Case studies of innovative practice in MS services


1-4 minute read per case study

On this page, MS health professionals share examples and methods of innovative working, from implementing a named lead for advanced MS to running an efficient DMD clinic.

The models listed below are published with permission of the teams in question. The models may be used as a guide for implementing similar methods in other services, where this is appropriate and useful.

Note: These models are designed to be a guide and/or inspiration to other MS health professionals, and to highlight the impact often relatively small changes can make. The MS Trust is not officially endorsing these models, nor necessarily labelling them as ‘best practice’, and understands some may not be applicable for all teams.

Current categories

  • Improving the accessibility of MS services
  • Supporting people with MS in self-management
  • Maintaining regular contact with people with MS
  • Effective multidisciplinary working
  • Improving the efficiency of a DMD service
  • Audit, evaluation and development

If you would like more information about any particular example listed below, please contact hpteam@mstrust.org.uk.

Has your service implemented an innovative way of working?

If so, we would love to hear from you. If your team, or a team you know of, has a model of working to contribute to this resource, please download and complete our template for models of innovative practice form (DOC, 102KB) and email it to hpteam@mstrust.org.uk. Alternatively, feel free to give us a ring on 01462 476726 – we'll ask some questions and then write up your case study for you.

If you would like more information about any particular example listed below, please contact hpteam@mstrust.org.uk.

Improving the accessibility of MS services

Two community MS specialists each dedicated to different areas of care

Name of team and area

MS Clinical Specialists Community Team
Neurological Clinical Specialist Team, Milton Keynes Community Health Services

Milton Keynes (covering people with MS who are registered with a Milton Keynes GP)

Brief description of the model

Background

Two MS specialists – an MS nurse (Lesley Catterall) and an occupational therapist in an MS nurse/clinical specialist role (Denise Middleton) – make up the community MS team in Milton Keynes. Lesley sees people with relapsing remitting MS (RRMS) (both those who are on disease modifying drugs (DMDs) and those who are not), and Denise sees people with progressive MS (PMS). The pair are based within a team of neurology clinical specialists who cover various conditions, although Lesley and Denise work solely on MS.

How it works

  • Lesley provides monitoring and support for people being prescribed a DMD, and symptom management to people with relapsing remitting MS, while Denise provides care to people with progressive forms of MS, who often require more support with regards to symptoms like mobility, cognition and balance. The differing needs of these two broad cohorts are each addressed by a single specialist with expertise in managing the individualised care people require.
  • People with MS who meet the relevant criteria are prescribed DMDs at the Oxford regional centre. This pathway includes Lesley attending people’s consultations and working alongside their neurologist and MS nurse team in joint clinics.
  • Both clinical specialists work alongside the local neurologists, liaise with GPs and work closely with other relevant services.
  • Initial appointments following diagnosis are conducted at the person’s home, with their consent.
  • In addition to home visits and clinic appointments, Denise and Lesley jointly run an eight week course on fatigue management twice a year with the local Neuro Rehab Service occupational therapists (OTs). This is based on the MS Society’s FACETS course, but has been adapted.
    • Week 1 is an introduction to MS and an education session, run by Denise and Lesley.
    • Week 2 covers MS fatigue specifically, also run by Denise and Lesley.
    • Weeks 3-8 are run by the OTs in the wider team, and, generally speaking, follow the FACETS programme.
  • Many people do not see their local neurologist on an annual basis. Only those who specifically ask for this have this put in place. Most simply see Denise or Lesley, who would request neurologist appointments when required. The pair are able to contact the neurologist easily, and are usually able to book appointments quickly.
  • Lesley and Denise regularly review the people on their caseload, but again on a needs-led basis. These reviews may be annual, six-monthly, or more frequent, depending on people’s needs.
  • In April 2016, Denise and Lesley started running transition clinics for people recently diagnosed with secondary progressive MS (SPMS). A person with MS who has transitioned to SPMS sees Lesley and Denise together at this clinic, before their care is managed solely by Denise.
  • Denise and Lesley work closely with the neurology team they are based with, as well as other local services, such as the neuro-rehab service and specialist continence nurse team. Joint assessments and joint working are not uncommon.
  • Denise and Lesley actively encourage email contact between themselves and the people they see, which promotes a trusting relationship and regular contact.
  • There is a full multidisciplinary team-led clinic once a month at Milton Keynes Hospital – the two specialists work closely with neurologist there
  • They also work closely with local MS Society branch – the clinical specialists attend monthly drop-ins and support groups, so see people with MS there too.
  • Denise and Lesley hold an annual education, information and support day for people with MS who are experiencing bladder, bowel and sexual problems. This is done in collaboration with relevant product companies.

Details about the team*

  • Caseload: approximately 400 people with MS
  • Area: Milton Keynes and surrounding area
  • Type of area: urban, comparatively small population of people with MS
  • No. of MS nurses: 1.6 WTE – 2 MS specialist nurses

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

This way of working is designed to benefit everyone with MS in the area – particularly ensuring that the care of people with progressive MS is not neglected. People on DMDs have an MS specialist nurse to advise them and monitor DMDs, while care for those people not on DMDs is not compromised.

How was it implemented?

This model has been in place since the service started offering DMDs. Prior to this, Denise was the only MS specialist in the team, and saw everyone with MS in the area.

What are the benefits of working in this way?

  • Specific MS clinical specialist role for people with PMS, who often have different needs to people with RRMS. Denise is able to provide symptom-specific advice and refer on to other services who may be able to provide help.
  • Denise’s background as an OT means that her focus on problem solving and function is particularly helpful for people with increasing mobility problems and physical needs. She also finds her holistic training proves helpful.
  • The community-based nature of the team means that the service is more flexible. The service is led by people’s needs and that care is personalised to these needs.
  • Initial assessments after diagnosis are usually done at home, providing a different (and arguably more accurate) perspective on how people (and their families) are managing with a recent diagnosis of MS and with symptoms.
  • Denise’s time is completely free of DMD monitoring and the admin and additional work this entails, so she may focus entirely on the people on her caseload who are not on DMDs.
  • Close links to the neurology team and other local services allow for speedy and straightforward referrals to other relevant services.

What needs to be in place for the model to work best?

  • Sustainable caseload
  • Relatively small area which is easy to travel around is preferable for this community-based service, particularly when conducting home visits
  • Good working relationships with local neurologists and other local services
Group clinics for people with MS

Name of team and area

Barts MS team, The Royal London Hospital (Barts Health NHS Trust)

London (and further afield)

Brief description of the model

Background

Feedback from people with MS indicated that group conversations attended by MS specialists were highly beneficial to participants. Consequently, the Barts MS team have made plans to adopt this approach during certain clinic times. These plans were made in conjunction with the Barts MS advisory group.

How it will work

  • Groups of approximately 10-12 people will attend a one-off four hour ‘Barts MS Group Clinic’ at which several MS specialists will be present.
  • The groups cover one of three areas: fall prevention; urinary tract infections (UTIs); and lifestyle management. These topics were carefully chosen on the basis of frequency at current clinic appointments and scope for effective self-management education. Over the course of 2017, nine clinics will be run: three of each of the areas listed above. So far, three clinics have been run – all on the topic of falls and fall prevention.
  • The health professionals in attendance will be: a consultant neurologist, a medical registrar, an MS specialist nurse, a physiotherapist, and an occupational therapist or continence nurse (depending on the topic of discussion).
  • The groups are facilitated by a professional facilitator, who has worked closely with the Barts MS team in the past, and has MS herself. This individual has significant experience in running similar events.
  • People are referred to these clinics by health professionals who identify individuals who would benefit from this clinic setting and would actively contribute to discussions.
  • Each clinic session will cover: warm up activities, education about MS symptoms and self-management techniques, and one-to-one conversations with a neurologist and/or MS nurse (alongside group activities) for addressing specific questions and concerns.
  • Attendees leave with a personalised care plan and information from the day and about what happens next.
  • After the Group Clinic, groups will be invited to a Google+ page where resources and updates are uploaded. This online forum will be followed up by the Barts MS team. There is a Google+ page for each clinic type (falls, bladder and lifestyle). This is also a useful method of collecting feedback about the sessions, to improve future clinics.
  • The slot is booked in the same way as a ‘normal’ clinic time, which means the groups are NHS funded and managers can evaluate the value of this way of working.
  • The clinics will communicate closely with local and relevant community services such as GPs or physiotherapy centres.
  • Appointments with MS nurses are not compromised. Everyone who attends the Group Clinics still has a yearly (at least) appointment with an MS specialist nurse.
  • Following the clinic, an MS specialist nurse or therapist will follow up the attendees by phone three and six months after the clinic, unless they have an appointment with an MS specialist nurse during that time.

Details about the team*

  • Caseload: approx. 1500 people with MS
  • Area: based in East London, and covers whole London area and some national patients
  • Type of area: densely populated and urban
  • No. of MS nurses: 2.0 WTE – 2 MS specialist nurses (+ other members of the multidisciplinary team)

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People with MS experiencing falls, UTIs and bladder problems, and perhaps struggling with self-management who would benefit from a group discussion setting. The care is also aimed at the families and carers of the attendees, who may also attend the Clinic Groups.

How was it implemented?

Plans have been developing since late 2015. A pre-pilot test clinic was held in September 2016.

Measurement tools for evaluation are currently in development to measure the value of these Group Clinics. These will address the following questions:

  • Are the clinics benefiting people living with MS?
  • Are the clinics lifting pressures on the service?
  • Are the clinics saving the Barts Health NHS Trust money?

What are the benefits of working in this way?

  • The Group Clinics reduce pressure on clinical time – for instance, questions which may apply to several patients are answered on one occasion, relevant health professionals are present and provide multi-disciplinary expertise, and attendees are educated in self-management techniques.
  • People with MS who attend develop a closer, trusting relationship with the service and know who to contact, and how and when.
  • Stronger relationships with community services.
  • Care structured around people with MS and their needs.

What needs to be in place for the model to work best?

  • Preferably a 'neutral' setting for the groups, and with a comfortable atmosphere to promote constructive discussions
  • A four hour slot approximately every month which is kept free for a neurologist, registrar, MS nurse, physiotherapist, occupational therapist and continence nurse
  • Strong ties to local community services
  • Careful research and involvement of local patient groups – clinics more beneficial if centred around needs of people with MS

Links to blogs

Use of telemedicine to improve access to specialist consultations in a remote island locality

Name of team and area

Western Isles MS Specialist Nurse service

NHS Western Isles Health Board, Scotland

Brief description of the model

The MS specialist nurse has enabled people with MS who require a specialist consultation to access this through telemedicine using Cisco Jabber – a programme similar to Skype which can be used on any computer or tablet but is secured for NHS use and is the preferred telemedicine application used in NHS Scotland.

Consultations can be carried out in patients’ own homes, with the MS specialist there at hand to undertake examinations and support the person with MS. The MS nurse’s laptop, or the patient’s own device, can be used.

Details about the area and case load covered by the team

  • Caseload: approximately 100 people with MS
  • Area: Western Isles: Outer Hebrides archipelago
  • Type of area: The Outer Hebrides archipelago is 150 miles north to south, connected by ferries, bridges and causeways and has 11 inhabited islands. It’s one of the most remote and rural areas in the UK.
  • No. of WTE MS nurses: 1 full time MS nurse

Who is the care aimed at?

Anyone with MS requiring a specialist consultation who would find it difficult to leave the islands. To date it has been used for consultations with a neurologist, neuro rehabilitation consultant, psychologist and psychiatrist. In the future, the MS nurse may use the same technology for her own consultations with people with MS in distant locations across the islands.

How was it implemented?

Jabber is used by NHS Western Isles and is installed by our IT Team on computers or tablets locally and at mainland providers. The MS Nurse identifies suitable patients to link with specialists and arranges dates and times with specialists and individual patients.

What are the benefits of working in this way?

  • Patients avoid the need for a long round trip to the mainland for a consultation which is time consuming, physically exhausting and costly (as much as £300-£600 in travel costs).
  • Patients are much more relaxed during consultations because they take place in the home environment, and consequently seem more able to take part in shared decision making.
  • Patients can built a good rapport with the specialists. This can increase patients’ confidence in health services.

What needs to be in place for the model to work best?

  • Jabber requires no special equipment and is set up to work in NHS Scotland, so particularly for health professionals in this area, little is needed other than a proactive individual willing to think creatively and make it happen.
  • Willingness from the specialists involved is required.
  • It is ideal if the MS nurse is able to undertake neurological examination, and they certainly need to follow the specialists’ instructions to examine the patient and be able to feed back the findings clearly.

Supporting people with MS in self-management

Relapse alert card (QuDoS in MS 2016 winner)

Name of team and area

Ashford and St Peter’s MS team, Ashford and St Peter’s Hospitals NHS Foundation Trust

Surrey

Brief description of the model

Background

The two MS specialist nurses in this area identified a need to educate people with MS, their families, and other health professionals (such as GPs) about what a relapse is, how it may be treated and who to contact. There was also a need to ensure people understood the importance of identifying a relapse and reporting it to the MS specialist team as soon as possible. It was also clear this was not a local issue. With this in mind, the nurses created a compact, credit card-sized medical alert card which was distributed to people with relapsing remitting MS.

How it works

View a copy of the MS relapse management card (PDF, 385KB).

  • The aim of the relapse alert card is to educate and empower people with MS and ensure people receive the right treatment and contact the team.
  • The card was designed so that people can keep it in a safe and accessible place, such as a wallet or purse, and easily refer to it when required.
  • The card contains the following information (based on the NICE guidelines for the management of MS (2014):
    • A definition of MS relapse
    • What to do (first rule out infection and check for a possible UTI, then seek treatment)
    • Treatment (i.e. dosage and frequency of methylprednisolone)
    • Contact details of the MS nurses
  • You can also download a Word Document version of the MS relapse management card (DOC, 220KB), which you can tailor to your own service.
  • If someone is experiencing a relapse, and are unable to contact their MS team, this card may easily be presented to other health professionals, such as GPs or A&E staff to guide them on NICE-approved treatment guidelines. This would also flag to the MS team that a change in DMD treatment may be required.
  • In summer 2016, the alert card was enlarged (to A4 size), laminated and sent to all GP surgery Practice Managers in the CCGs of North West Surrey, together with a covering letter and information leaflet about the MS nurse service. This raised awareness amongst local GPs about the MS team and about MS more broadly too. While this is still early on in the engagement process, the nurses have already have several GPs contact them to discuss people under their care who may be experiencing a relapse.
  • The MS team also plans to engage local A&E departments in the same way too.
  • The MS nurse service also provides a weekly relapse clinic, together with a local consultant neurologist, as well as recently developing an app on management of MS for people with the condition.

Details about the team*

  • Caseload: approximately 400 people with MS
  • Area: North West Surrey
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 1.6 WTE – 2 MS specialist nurses

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People with relapsing remitting MS

What are the benefits of working in this way?

  • People are educated about what a relapse is, how it is treated, and the importance of contacting the MS team as quickly as possible
  • People with MS feel empowered armed with this knowledge and knowing that they are easily able to convey the relevant information to any health professional if experiencing a relapse
  • The MS team is able to engage local GPs and A&E staff and promote awareness of the service, and what to do when someone is having a relapse
  • Awareness about the service and how to get in touch
  • A low-cost, low-tech solution to educating people about an important issue.

What needs to be in place for the model to work best?

  • Printing facilities (and staff capacity) to print the cards
  • Local networks of GPs
  • Contacts for Practice Managers within CCGs
Self-management programmes for people with neurological conditions

Name of team and area

Hertfordshire Neurological Service, Hertfordshire Community

Hertfordshire

Brief description of the model

The Hertfordshire neurology service runs self-management programmes for people with MS, Stroke and Parkinson’s, and have developed these courses over the past four years. The programme includes three modules: “What is self-management?” (group discussion); “Living well with a neurological condition” (attended by members of the multidisciplinary team – usually a physiotherapist, OT, psychologist, dietician and sometimes a speech and language therapist); and “Living with MS” (specifically MS – different neurological conditions are addressed separately at this point). Those who require more 1:1 assessment are granted this, and are given more specific, personalised goals. People are referred to these groups with the straightforward criteria that they may benefit and would contribute constructively to group discussions etc. The programme is run approximately four times per year, depending on uptake. The self-management sessions are held off site where possible, to avoid an overly ‘clinical’ setting. The service also offers a newly diagnosed day, which follows a similar format, whereby people with different neurological conditions are educated about living well with a neurological condition and then receive condition-specific guidance.

Details about the team*

  • Caseload: unknown
  • Area: Hertfordshire, with the team based in Watford
  • Type of area: mostly urban, covering some rural areas
  • No. of MS nurses: 1 full time MS nurse

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

The programmes are designed for people with neurological conditions who have been recommended by specialist nurses/clinicians as they would benefit from self-management education and who would actively and constructively contribute to group discussions.

How was it implemented?

The self-management programmes have been running for over ten years, but have been developed in recent years, led by the lead neurology specialist physiotherapist in the service. More recently, the programmes have increased capacity to educate more people and develop formats, with a greater emphasis on personalised self-management, rather than passive education.

What are the benefits of working in this way?

  • Value of sharing experiences with other people who share a neurological condition and/or symptoms
  • Many people who attended the sessions said they felt more positive and in control of their management of their condition and its symptoms
  • Emphasis on self-management means that pressure is eased off clinical services, as people are able to manage some symptoms without guidance from a specialist health professional. People are educated about when, who, and how to contact when experiencing acutely deteriorating symptoms.

What needs to be in place for the model to work best?

  • Good working relationships within a neurology specialist multidisciplinary team
  • Good relationships with other local services
  • Awareness of the programmes, both among clinicians who can refer people to them and people who may benefit from attending
  • Expert knowledge and confidence on the part of the specialist therapists and health professionals running the courses
Community-based Cool Water Aqua-Therapy for people with MS (QuDoS in MS 2017 winner)

Name of team, and area

Bristol and Avon MS Clinical Centre (BrAMS), North Bristol NHS Trust

Bristol and Avon, South West England

Brief description of the model

Background

The BrAMS Aqua-Therapy Programme for people with MS was designed and launched by MS specialist physiotherapist, Tania Burge. Tania identified that people with MS are often advised to go swimming to improve fitness and mobility, but rarely do so independently. In addition, many people with MS who have high EDSS scores often resist challenging balance problems. Aqua-therapy utilises buoyancy and resistance properties of water, meaning that this is can be an effective training method in maintaining and improving function during everyday activities.

This prompted Tania to plan the establishment of a new service to enable people with MS to exercise safely, guided by a specialist physiotherapist (and supported by assisting staff). The aims of the new service were:

  • To improve balance in people with MS who find land-based rehabilitation difficult
  • To enable participants to continue attending the programme independently in a suitable and appropriate environment to self-manage their MS
  • To train and educate leisure centre staff in MS to enhance their ability to support people with MS to maximise their function

How it works

  • The Programme is run at a local leisure centre, with a “Cool Water” pool (29°C) suitable for the class. The Programme is run by specialist physiotherapists, who are supported by assisting staff.
  • Each session is led by an MS specialist physiotherapist, supported by an MS assistant practitioner and 3 swim instructors.
  • The Programme receives referrals from the MS specialist physiotherapy service at the Bristol and Avon MS Service (BrAMS). The criteria includes:
    • Approx. EDSS 6-7.5
    • Experiencing problems with balance
    • Medically stable
    • Able to attend at least 4 sessions (of a 5 session course)
  • Participants sign a “contract” before taking part in the Programme, including agreement to the following rules:
    • "Eat breakfast before the session, and make sure you’re well hydrated"
    • "Inform us if you’re feeling unwell, or there’s recently been a change in your MS"
    • "Abide by the pool’s health and safety measures"
    • "Entry and exit to the pool must be managed/supervised by the MS physiotherapist"
  • Participants attend a 5-week course (1 hours session per week), in a maximum group size of 10 people
  • On completion of the course, participants are invited to continue to attend to exercise independently
  • Each session includes:
    • Warm up
    • 20-minute circuit exercises:
      • Walking and balance
      • Upper limb strengthening
      • Lower limb strengthening
      • Core stability
      • Cardiovascular fitness
    • Equipment to assist with balance stability (floats) and to increase difficulty of exercise (weights)

Details about the team

  • Area: Bristol, Avon, Somerset, South Gloucestershire and beyond
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 4 MS specialist nurses, 1 MS specialist physiotherapist

Who is the care aimed at?

People with MS with EDSS of 5.5-7 who experience balance problems and find land-based rehabilitation difficult

How was it implemented?

A service evaluation of the Programme is ongoing to measure the impact of aqua-therapy on people with MS who were eligible to participate (some headline results below).

To date [March 2018], 18 courses have been completed, with over 100 participants taking part. Over two thirds of participants were women, and the age range of participants is 24-72. The EDSS range was 6-7.5. 29% of participants regularly return to exercise independently.

What are the benefits of working in this way?

  • The evaluation of the Programme so far shows that outcomes had improved for many participants following involvement in the aqua-therapy sessions. Here are some headline results:
    • Berg Balance Scale:
      • Mean before - 41.6 (borderline "medium" fall risk)
      • Mean after - 45.26 ("low" fall risk)
    • Timed Get Up & Go:
      • Before – 23.7
      • ​After – 18.55 (falls risk still “high” but reduced)
    • Activities-specific Balance Confidence Scale:
      • Before - 42.5
      • After - 46.63 (increased level of functioning and decreased risk of falling)
    • MSIS-29:
      • Before - 63.2 physical / 26.2 psychological
      • After - 58.76 physical / 23.25 psychological (reduced impact in both areas)
  • Feedback from participants highlighted that this was a beneficial and useful:
    • "Brilliant course, but hard. Enjoyed the social aspect and want to come back and independently exercise."
    • "It made me realise I can do more than I thought. Feel more positive."
    • "The overall benefit of continuing aqua-therapy is evident in my general wellbeing, thus reducing in some measure my call on other NHS services."
  • Engagement with local community services/organisations and raised awareness of MS and the benefits of water-based physiotherapy for people with balance problems
  • Social element and bringing people with MS together locally
  • Promoting fitness, wellbeing and healthy living
  • Engaging people with MS in tailored exercise to improve symptoms and promote effective and continued self-management, consequently reducing pressure on NHS services and other health and social care services for people with MS

What needs to be in place for the model to work best?

  • Maintaining NHS standards in a community setting, including:
    • Issues around data protection and information governance (e.g. data storage and confidentiality)
    • Safeguarding for vulnerable adults
    • Professional responsibility and roles (insurance, risk assessments etc.)
  • Access to a suitable pool (heated at 29°C, large enough, and accessible) locally, and positive engagement with the pool management to run the Programme
  • Willingness of pool staff to receive education and training about MS and the programme
  • Negotiation with pool staff for participants to use walking aids and/or wheelchairs on poolside
  • Access to MS specialist physiotherapists, physiotherapy assistants and swim instructors
Neuro Gym for people with long term neurological conditions

Name of team, and area

Kingston Community Neuro Rehabilitation Team, Your Healthcare CIC

Royal Borough of Kingston, London

Brief description of the model

Background

Your Healthcare CIC is a not for profit social enterprise which provides health and social care services in Kingston and Richmond. The Kingston Community Neuro Rehabilitation Team within Your Healthcare provides a neuro gym to meet the needs of all those with a neurological condition. There is a range of specially adapted equipment which allows those with a range of impairments to exercise in a suitable environment after discharge from the service. Funding for equipment was raised through Your Healthcare, League of Friends and The National Lottery. Equipment was also included for those who may be dependent on a wheelchair.

Equipment provided includes

  • Motomeds
  • Power Standing Frame
  • Upright bikes
  • Recumbent Bike
  • Functional Trainer - weights
  • Rower
  • Free weights

Patient and therapist feedback identified that there were not enough exercise options in the local community to meet the long term needs of people with neurological conditions. A scoping exercise revealed that often patients had to travel outside of the borough in order to exercise. The team decided as a service to create a neuro gym, to provide people with tailored, appropriate exercise options once they had been discharged from the service to continue to self-manage their long term condition.

How it works

Each patient is assessed by one of the neuro team’s physiotherapists or technical instructors and inducted on equipment that is thought to be beneficial for them. If required, demonstrations of exercises and equipment are also given to carers or personal assistants. A £3 charge is made for a one hour session and this goes towards paying for the exercise instructor who attends. This covers the costs of the resource and, as a social enterprise project, any additional income generated is reinvested for increased resource and equipment. The team run 7 sessions per week and attendees are able to book one week in advance. The gym is on site where the community staff work. The exercise instructors are employed by Your Healthcare but as bank staff.

The exercise instructor is a band 4 instructor working within the neuro gym and has experience of working with neurological patients. Additional exercise instructors have recently been appointed – these individuals have a REPS level 3 or 4 qualification and will receive 1:1 support during an induction period. This role can also be done by a physiotherapist.

Details about the team

  • Area: Royal Borough of Kingston
  • Type of area: Urban
  • Team members: physiotherapists, occupational therapists, speech and language therapists, psychology, dietitian and rehabilitation assistants

Who is the care aimed at?

People with long term neurological conditions, including multiple sclerosis.

How was it implemented?

Initially, this model was run as a pilot project for 4 months. During this time, the team ran 3 sessions per week, which were well attended and feedback was positive from both patients and carers. Following this, it was decided to roll this project out long term. A business case was developed and funding was secured through Your Healthcare, Local League of Friends charity and the National Lottery, to purchase equipment and initially fund the exercise instructor post.

What are the benefits of working in this way?

  • Ensures everyone has the opportunity to exercise in a supportive and safe environment.
  • May reduce referrals back to the service.
  • Supports and promotes self-management and healthy lifestyle within the community.
  • Encourages patients and healthcare staff to work together to find solutions.

What needs to be in place for the model to work best?

  • A supportive employer
  • Funding opportunities, for instance for funding the exercise instructor post
  • A gym area already in situ
  • Accessible venue, including parking
  • Engaged and motivated patients

Maintaining regular contact with people with MS

Ensuring annual contact with people with MS: MS support workers

Name of team and area

NHS Greater Glasgow and Clyde Chronic Disease Management team, Glasgow City Health and Social Care Partnership

Greater Glasgow and Clyde, west of Scotland

Brief description of the model

Background

In 2005, it was identified that many people with MS in the Glasgow area had lost contact with MS specialist services and potentially had significant unmet needs. The MS service was consequently established within Greater Glasgow Primary Care as part of a Chronic Disease Management programme. This allowed the Greater Glasgow and Clyde (GGC) Health Board to employ three dedicated MS support workers to undertake GP practice based annual assessment of all individuals with a diagnosis of MS across NHS GGC.

How it works

  • The three MS support workers visit GP practices in Glasgow, identifying everyone with MS on the practice register and invite them (via the surgery) for an annual review meeting, either at the surgery, or at their home if necessary.
  • The support workers use a generic standardised electronic assessment, which incorporates the UK Neurological Disability Scale, to highlight issues for further consideration. These issues include social problems, as well as medical issues and symptoms.
  • The support workers ensure an effective signposting role: they have links to many local health and social care services, and they are able to refer directly back into the specialist MS services as necessary.
  • The service aims to invite everyone with MS in the area to a review once a year. Some decline the offer, but approximately 60% who are invited attend on the first or second occasion.
  • The support workers are not a substitute for the MS specialist nurses and complement the specialist clinical services provided at the Queen Elizabeth hospital in Glasgow, but are a valuable 'safety net' to ensure everyone with MS has contact with the services they need or are anticipated to need.

Who is the care aimed at?

All individuals with a diagnosis of MS registered within their GP practice records (at a GP in the NHS GGC area), including those not in contact with the acute specialist MS team.

How was it implemented?

As part of the NHS GGC Chronic Disease Management programme, three MS support workers are employed by NHS GGC and hosted within Glasgow City Health and Social Care Partnership to deliver this programme of annual reviews within GP practice and community setting. The service works closely with Partnership colleagues from health and social work services, local GPs and practice staff, as well as MS specialist service at the Queen Elizabeth University Hospital, to ensure that no one with MS in the area is left ‘off the radar'.

What are the benefits of working in this way?

  • Ensures everyone with a diagnosis of MS is contacted with the offer of a review appointment on an annual basis.
  • Supports capacity within NHS GGC MS services' provision by completing the annual review of all individuals with a diagnosis of MS within the Partnerships, including those not in contact with the acute team.
  • Supports the identification of social, psychological and financial issues as well as health issues.
  • Support is delivered locally to people with MS, or even at home if this is required.

What need to be in place for the model to work best?

  • Funding for the support worker posts
  • Knowledge map of all support services within each Partnership area
  • Clear links and communication between MS support workers, GP surgeries, acute MS team, and other relevant health and social care services
  • Positive relationship with the network of local GP surgeries
Annual reviews of people with progressive MS and benign disease

Name of team and area

Ayrshire MS team, Douglas Grant Rehabilitation Centre

Ayrshire and Arran, South West Scotland

Brief description of the model

Background

The consultant MS physiotherapist, MS specialist occupational therapist and two MS nurses provide annual review appointments for people with progressive and benign MS. This specialist team use a 'whole person approach' developing holistic multidisciplinary assessment and documentation to identify areas of need, help manage symptoms, and to proactively prepare for disability progression.

How it works

  • People with MS living in Ayrshire and Arran are invited by letter to attend the MS review clinic at least annually.
  • A patient management system is used to ensure that everyone not currently receiving disease modifying drugs (DMDs) is contacted.
  • Prior to the clinic appointments, a 'concerns checklist' is sent containing a wide range of topics that people may wish to cover during their appointment. They are asked to prioritise any issues to focus the appointment on what is most concerning, and serves as a reminder to both parties about important areas to discuss.
  • The MS team member will complete a letter to the GP and any other appropriate services. Referrals are made to other disciplines
  • The clinic appointments cover:
    • General overview, including health and wellbeing (covering psycho-social areas, as well as clinical/medical issues)
    • Answering specific questions using the 'concerns checklist' as a guide
    • Where necessary, the health professional present will refer the patient to another service (which is usually very quick, as the team is part of a pan-Ayrshire network of services)
  • The service also has a helpline number which is a single point of contact.
  • In addition to this MS nurse, DMD, psychology and therapy appointments are available
  • Patients can self refer directly to any member of the MS team

Details about the team*

  • Caseload: approximately 1000 people with MS
  • Area: Central Ayrshire, Irvine and Arran
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 3.0 WTE – 2 MS specialist nurses, 1 MS support nurse (+ 1 WTE consultant physiotherapist in MS, 0.5 MS consultant clinical psychologist, 0.5 MS specialist occupational therapist)

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People with progressive MS and people with benign MS

How was it implemented?

The consultant physiotherapist in MS and MS specialist occupational therapist tested this way of working by carrying out a pilot clinic with100 people with progressive MS. The feedback was very positive and the model was developed further involving the MS nurses to provide additional support and was rolled out o all patients with progressive and benign MS.

What are the benefits of working in this way?

  • Ensures everyone with progressive and benign MS is offered a review appointment at least once a year.
  • Ensures that people with MS who are not on DMTs are seen by MS specialists.
  • Referrals to other services are streamlined.
  • Patients are seen by MS specialist with an expert and wide-ranging knowledge of MS.
  • Releases capacity of MS neurologist and neuro rehab consultant
  • 'Concerns checklist' streamlines and focuses appointments
  • Promotes strong involvement of patients’ GPs in their MS care.

What needs to be in place for the model to work best?

  • Administration support to co-ordinate management of patient appointments, letters to GP and other service providers and onward referral. There are benefits from having this on site.
  • A patient management system which monitors appointments allowing for regular review to be implemented.
  • Good working relationships with therapies and local services, making onward referrals simpler and easier.
  • Knowledgeable team with capacity to offer annual review
  • Clinic space with reception support
Reinstating contact with people with MS lost to follow up

Name of team and area

Northumbria Healthcare Community MS Specialist Nurse team

Northumberland

Brief description of the model

Background

Jane and Miriam, MS specialist nurses working in the very rural Northumberland area as a community MS nurse team, identified that their caseload of people with MS was much smaller than the estimated number of people with MS in the area they cover. An information request submitted in 2012 to all GP surgeries in Northumberland revealed that there were 797 people with MS in the area – more than double Jane and Miriam’s caseload. In 2013, with the support of the MS Trust GEMSS programme facilitators, the team sent a survey via GPs to people with MS not registered with the service.

How it worked

  • The team contacted the GP practices in the area to ask whether they would take part in the survey. 13 out of 47 surgeries agreed to take part. These practices had, at that time, 286 people with MS registered, representing over a third of all people with MS in Northumberland.
  • 160 surveys were sent out those not registered with the MS nurse service. 62 people responded – a response rate of 39%.
  • The survey highlighted the number of people who were accessing care elsewhere and those who had not seen a specialist about their MS at all in a significant period of time.
  • Jane and Miriam were able to use the data from the surveys as evidence that more work was needed (in collaboration with other MS services that people were accessing and GP surgeries in the county) to locate people with MS who could benefit from the service but haven’t already done so.

The results

  • 42% of respondents had not seen an MS specialist in the past year, and the majority of those who did saw someone working in another, non-local service. 4 out of 5 respondents who had not seen an MS specialist said they had not had contact with any health professional about their MS in the past year, even though 84% of them reported they’d experienced one or more troubling MS-related symptom in the last 3 months.
  • 23% of respondents said they would like more contact with MS services.
  • 46% said they did not know what type of MS they had, highlighting that they may not have access to sufficient information about the condition.
  • Most respondents were in contact with an MS service, or at least relevant health professionals, which is reassuring. However 10% of people with MS in the area (about 80 people) are not in contact with any specialist service, so further work is required to identify this group.

Details about the team*

  • Caseload: 422 people with MS
  • Area: Northumberland
  • Type of area: very rural
  • No. of MS nurses: 1.8 WTE – 2 MS nurses

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the model aimed at?

People with MS in the Northumberland area who have not been in contact with the community MS nurse service.

How was it implemented?

With the support of the MS Trust GEMSS facilitators, Jane and Miriam approached local GP surgeries, who distributed the survey. The results of the survey were later shared with the GPs, MS specialist colleagues at the local neuroscience centre hospital and a local rehabilitation centre.

What are the benefits of working in this way?

The community MS nurses now have data to provide evidence that a significant number of people with MS in Northumberland are not in contact with any services for their MS. This is the first step in working to follow up those who are lost to services in the area.

What needs to be in place for the model to work best?

  • Understanding of the local area and the services people may be accessing
  • Links to the GP surgeries in the county
  • Cooperative GP surgeries who have the capacity to send out the surveys
Weekly telephone/Skype clinic with an MS specialist nurse

Name of team and area

Wye Valley MS service

Herefordshire

Brief description of the model

Del Thomas, the MS specialist nurse for the Wye Valley area, conducts weekly telephone clinics for people with MS. People may book 30 minute slots to talk to Del over the phone, or by Skype or Facetime if they prefer. Appointments may be booked in advance by a team coordinator, but the clinic is deliberately left unfilled so people may call on the day. If anyone calls and is not able to organise a time to speak to Del that day, she will follow up with these people at face to face appointments at a later date.

Details about the area and case load covered by the team*

  • Caseload: 580 people with MS
  • Area: Herefordshire
  • Type of area: very rural
  • No. of WTE MS nurses: 1.0 WTE – 1 MS nurse + 0.43 WTE MS occupational therapist

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

Anyone with a diagnosis of MS under the care of the Wye Valley MS team who requires support and is unable (or for whom it is difficult) to travel to see the MS nurse in person.

How was it implemented?

With a large, rural area to cover, many of Del's patients, particularly those with more progressive MS and advanced disability, find it difficult to travel long distances to see the MS nurse in person. It is also difficult and time-consuming for Del to provide many home visits for these people. For these reasons, speaking by phone, is often preferable for both parties if the needs/queries do not require face to face assessment.

What are the benefits of working in this way?

  • Reducing pressure on the MS specialist nurse's time
  • Convenient for people who may find it difficult to visit the nurse – reduces complicated travel arrangements (which may have an effect on MS fatigue)
  • Substantial 30 minute slots with time to discuss in-depth issues
  • Helpful for emergency queries, which the nurse may then determine whether a face to face consultation is needed
  • Saves time for both people with MS in the area and the nurse

What needs to be in place for the model to work best?

  • Sufficient coordination and administration support
  • Sufficient monthly clinic time set aside
  • Efficient, organised telephone system and clear process both for staff and people with MS
  • Skype/Facetime facilities

Effective multidisciplinary working

MS specialist OT to provide guidance on fatigue, employment and legal issues

Name of team and area

Wye Valley MS service

Herefordshire

Brief description of the model

Gilly Burdon has been working with MS specialist nurse, Del Thomas, in Herefordshire since 2011 as a part-time MS occupational therapist (OT). Gilly has an active caseload of 120 people, who are followed up at a frequency depending on need, within a clinic/home environment setting.

She is able to offer specialist advice regarding:

  • Fatigue management
  • Vocational rehabilitation
  • Handwriting assessments
  • Feeding assessments
  • Environmental controls
  • Posture and seating issues

Gilly provides support in these areas, and educates patients on self-management techniques for these complicated issues, particularly on fatigue, which affects around 80% of people with MS. She audits the people she has seen for vocational rehabilitation annually, to monitor their working status and offer further support as required.

Communication is key between both professionals, they are based in the same office and have protected time for multidisciplinary working and service development. This facilitates enhanced joint working and outcome measures.

Details about the area and case load covered by the team*

  • Caseload: 580 people with MS
  • Area: Herefordshire
  • Type of area: very rural
  • No. of WTE MS nurses: 1.0 WTE – 1 MS nurse + 0.43 WTE MS OT

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

Anyone with a diagnosis of MS under the care of the Wye Valley MS team who requires support on one or more of the issues listed above

How was it implemented?

With a large, rural area to cover, Del’s caseload as an MS specialist nurse was becoming difficult to manage, and the need for another MS specialist was clear. Del advocated for the post to be for a specialist OT, to work in areas where she was particularly lacking in capacity and where needs were significant and frequent (fatigue, for instance). Gilly’s role initially focused solely on fatigue management and employment issues, but has since evolved.

What are the benefits of working in this way?

  • Reducing pressure on MS specialist nurse’s time
  • A named contact for people with MS experiencing fatigue, employment issues, or any of the other areas specified above
  • More people with MS in the area remain in work
  • Contributing to a more efficient, good quality MS service based on the needs of people with MS

What needs to be in place for the model to work best?

  • An MS specialist OT with experience in the above areas
  • A close working relationship between the MS nurse and OT
  • Capacity to easily follow up patients who have been seen previously
Multidisciplinary team of the year (QuDoS in MS 2016 winner)

Name of team and area

Community neuro-rehabilitation service, CSH Surrey

Surrey

Brief description of the model

Background

This community neuro-rehabilitation multidisciplinary team works closely with the MS specialist nurse, and consists of a physiotherapist, occupational therapist, speech and language therapist and a dietitian. This team also works closely with other local services, such as palliative care. This is a team which provides local, coordinated, efficient, effective and holistic care to people living with MS in the Surrey area.

How it works

  • The team work closely with internal and external local services, such as wheelchair services, continence specialists, consultant neurologists and social services.
  • They also communicate closely with local district general hospitals, tertiary services, orthotics services and palliative care. Joint home visits between these services occur as required.
  • The MS nurse is able to visit people with MS in specialist neurological rehabilitation units within the community hospital for intensive rehabilitation and disability management.
  • The team holds joint MS clinics and joint home visits when needed, meaning that the service is accessible to everyone with MS and appointments have a holistic approach.
  • The multidisciplinary team meets once a week to discuss the service, any issues, and people who have seen the service who may benefit from seeing different members of the team. Additionally, informal discussions occur throughout the week and close communication is maintained between team members. Referrals across the multidisciplinary team are also easily organised.
  • The MS nurse also meets with the team leads on a quarterly basis to discuss the MS service, how it may be developed and updates the team on the latest research and treatments for MS.
  • The multidisciplinary team also work together to run very well attended newly diagnosed days to provide support and education for people recently diagnosed with MS. This is run in collaboration with First Community Health Care that covers East Surrey.
  • The service also provides a 'one stop helpline' (telephone and email) accessible to everyone living with MS. This is monitored and managed by an administrator and all enquiries are answered within 48 hours (within the working week).
  • The MS nurse also attends the local MS Society drop-in session which occurs monthly, and the team also work with this local branch to provide weekly physiotherapy sessions.

Details about the team*

  • Caseload: approximately 500 people with MS
  • Area: CSH Surrey, with the MS nurse based in Epsom. Includes Epsom, Leatherhead, Dorking, Cobham and Esher
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 1.0 WTE – MS specialist nurse

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People with MS who have a GP in the CSH Surrey area.

What are the benefits of working in this way?

  • Ensures everyone with MS in the CSH Surrey area receive the care they require from the relevant expert professionals
  • Referrals to other services and relevant health professionals are streamlined
  • People are seen by neuro-specialists with an expert and wide-ranging knowledge of MS
  • Releases capacity of MS neurologist and neuro rehab consultant
  • A person-centred, holistic approach to managing MS

What needs to be in place for the model to work best?

  • Administrative support to manage the enquiries telephone line and email mailbox
  • Good working relationships local services, internal and external (such as social services and wheelchair services) making onward referrals simpler and easier
  • Knowledgeable team with in-depth understanding of MS
  • Communication tools to allow for easy discussions between the team members
Efficient and effective multidisciplinary working in a rehabilitation centre

Name of team and area

West Midlands Rehabilitation Centre

Birmingham and West Midlands

Brief description of the model

Background

The team consists of a consultant physician in rehabilitation medicine, an occupational therapist, a neurology specialist physiotherapist, and an MS specialist nurse, with significant input from a counsellor, psychologist, speech and language therapist, and team coordinator. The team see people with MS regularly and also frequently provide dedicated MS Specialist Rehabilitation clinics. The West Midlands Rehabilitation Centre (WMRC) has been working this way for approximately 10 years. The service covers the West Midlands area and is in close communication with other MS services – both hospital-based and community – in the area.

How it works

  • Health professionals in the local area refer people with MS to this service who require rehabilitation input, either to the specific MS clinic (which is run six times per month), or for an ad hoc appointment with a specialist about a particular problem. Once someone has been seen by the service once, they or their carer can self-refer back to the team in future (and the service contacts the GP for an up to date medical record when this happens).
  • MS Specialist Rehabilitation clinics are run six times per month – two are run by the four members of the multidisciplinary team (MDT) listed above, two are run by the MS specialist nurse and two are run by the consultant physician in rehabilitation medicine. People with MS are allocated to these clinics according to their needs and which health professionals are best suited to help them. Designating certain members of the MDT to certain clinics increases capacity, but other members of the team remain available to provide advice and expert input as well.
  • The team involve carers to a significant extent, particularly including them in self-management education. Home visits are offered and carers may be educated in matters such as exercise, transfers, positioning and sleep.
  • The team currently do not have the resources to run self-management programmes or support groups, but hope to do this in future as they believe this would be beneficial to people with MS. Early plans currently look to physiotherapy, occupational therapy, fatigue management and symptom management programmes as potential options.
  • MDT assessment includes a follow up agreed to by members of the team and the person being seen, and can be four monthly, six monthly, or more. In between appointments, the team is always contactable by phone, and are flexible with appointments.

Details about the team*

  • Caseload: approximately 300 people with MS
  • Area: Birmingham and West Midlands
  • Type of area: urban, densely populated
  • No. of MS nurses: 1 MS nurse

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People with MS who require holistic assessment , rehabilitation and therapy (often people with progressive forms of MS and complex disabilities)

How was it implemented?

Approximately 10 years ago, the centre adapted its services to provide more specific and relevant clinics and teams, which is when an MS service was initiated there. The MDT for MS developed and with significant input from other services, such as psychology and spasticity management. The service has developed with input from a user group (now defunct, but plans are currently in place in implement a similar group again) and numerous patient satisfaction surveys, responding to feedback from people who use the service.

What are the benefits of working in this way?

  • Multidisciplinary input to provide holistic assessment and management
  • Adapt the service according to the needs and feedback of the people who use the service
  • People with MS/carers instigate appointments based on their needs/problems arising
  • Appointments are flexible
  • The team is readily available by phone for any enquiries
  • Professionals, such as therapists are utilised in such a way that capacity is optimised but expertise is not compromised – regular input from all members of the MDT means people with MS see particular specialists, depending on their needs
  • Other relevant services in the local area are easily accessible

What needs to be in place for the model to work best?

  • Core members of MS MDT (MS specialist nurse, specialist physiotherapist, specialist occupational therapist and consultant physician in rehabilitation medicine) with close links to other health professionals within the wider team, such as a speech and language therapist or psychologist
  • Access to other services and expertise in the local area, and good working relationships with other local MS teams (eg the hospital-based MS nurse teams nearby)
  • Administration and coordination by a team coordinator
  • Regular audits of the service, so the team may respond to feedback and people's needs – care is centred around people with MS themselves
Efficient multidisciplinary working in a large MS specialist team

Name of team and area

Cardiff MS nurse team, University Hospital of Wales

Cardiff city and the valleys

Brief description of the model

Background

The Cardiff MS team consists of five MS specialist nurses, a specialist physiotherapist, specialist occupational therapist (OT), a psychologist, specialist continence nurse, four neurologists, a research nurse and a team of support staff to provide coordination and administrative assistance. The team works very closely together, and follows each person on the caseload from diagnosis.

  • Initial contact for newly diagnosed patients is at the neuro-inflammatory clinic at the time of diagnosis. A newly diagnosed home visit is offered within two weeks.
  • People with more complex needs are offered an MDT (multidisciplinary team) home visit, by an MS nurse, a physiotherapist and OT.
  • The team operates an answerphone service and there is an MS nurse on call every day, to ensure that people with MS requiring guidance or support are able to speak to someone in a timely manner. Calls are prioritised and recorded electronically on a secure database.
  • The team also offers a weekly relapse clinic at which the following health professionals are present: MS nurses, neuro registrar, physiotherapist, and OT. People with MS have fed back that this mix of professions is helpful to gain holistic guidance.
  • The team holds a weekly DMD MDT meeting to discuss individual cases (with shared decision making) ensuring that appropriate treatment decisions are made. Abnormal blood results, side-effects, adverse events are also discussed and documented.
  • In addition, the MS nurses, specialist physiotherapist, OT and psychologist hold a monthly MDT meeting which acts as supervision and enables them to discuss complex cases, and people with significant problems in order to develop specialist management plans.
  • The service uses a comprehensive database – 'Neurology Workstation' – which has a secure messaging service which allows for straightforward communication between team members.

Details about the team*

  • Caseload: 2,500 people with MS
  • Area: Regional service covering Cardiff and Vale, Caerphilly and the surrounding valleys
  • Type of area: urban/city, but with significant rural areas surrounding
  • No. of WTE MS nurses: 5.8 WTE – between 6 MS nurses

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

This way of working is designed to benefit everyone with MS in the area – particularly ensuring that no one is left ‘off the radar' and everyone sees the correct specialist health professional they need. The team are also able to actively try to help people with complex needs.

How was it implemented?

This model has been in place since 2002 when the MS Risk-sharing Scheme came in to being and Health Commission Wales funded the development of the team.The team has always been integrated in this way. With the introduction of the ‘Neurology Workstation', this way of working was further developed.

What are the benefits of working in this way?

  • Health professionals are closely supported by their specialist colleagues with different backgrounds, providing the most accurate, relevant, holistic care as possible.
  • People with MS get to know the whole team well, and know how to contact the right service.
  • People are followed up and have a close relationship with the team from diagnosis, so the vast majority of people with MS in the area are known to the service
  • In the long term, this way of working saves time and resources, as people with MS are more likely to be able to access the relevant help they require quickly and are aware who to contact, when, and how.
  • People with complex and advanced MS are supported by the relevant specialist health professionals.

What needs to be in place for the model to work best?

  • A sustainable caseload (i.e. approximate 358 people (or fewer) with MS per full time MS nurse)
  • Access to an MS specialist neurologist, MS specialist physiotherapist, MS specialist OT, specialist continence nurse and a psychologist, preferably in the same building/hospital
  • Good working relationships within the team
  • Good relationships with other local services
A responsive and effective service in a centre of excellence for MS

Name of team and area

Royal Stoke MS centre of excellence, Royal Stoke University Hospital

Stoke on Trent and surrounding area

Brief description of the model

The Stoke MS team have been working on improving their service and expanding their team. They recently became a 'centre of excellence' and have been making improvements to the efficiency and quality of the services they provide for people with MS in the area. The service offers a hub and spoke model with eight satellite clinics in the community; a One Stop Diagnostic clinic, reducing waiting times significantly; access to disease modifying drug (DMD) assessment within 2-4 weeks for those who are potentially eligible; coordination with the rehabilitation team; clinical psychology support and "MS ResponseStoke" with nurses on-call Monday-Friday. Nurses are able to access people's notes on a secure laptop through the Clinical Information System (CIS), which contains results and correspondence with people they see. All calls are triaged through the team's administrative support and logged on to a call system. The answerphone is checked every hour and urgent calls are put through to the nurses immediately; there are several lines available, and the numbers of these are provided to people with MS in the area. There is also a Facebook page for people to communicate with others with MS, which is monitored by a nurse

While the speedier response rates are the main aspect of improvement for the team, they have also been able to create stronger ties with community services. For instance, the team has set up a Tysabri treatment service at a second hospital – meaning that people on this DMD in the Stafford area are able to be treated closer to home. In addition, with new additional capacity in this team, DMD monitoring processes are less pressured and people are put on treatment more quickly. The team aims to provide personalised care for people living with multiple sclerosis in the area they cover.

Details about the area and case load covered by the team*

  • Caseload: 2,500 people with MS
  • Area: Stoke on Trent, Stafford, parts of Cheshire and Shropshire
  • Type of area: mostly urban, but covering some rural areas
  • No. of WTE MS nurses: 6.82 WTE – 8 nurses

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

Anyone with MS under the care of the team who contacts the service

How was it implemented?

In August 2015 the team put forward a successful business case to transform the service into an ‘MS centre of excellence' led by the lead MS neurologist. The service was able to recruit new MS consultants, several new nurses, and an admin co-ordinator. The fast response telephone system and on call service were put in place in early 2016, and there are plans to audit these systems.

What are the benefits of working in this way?

  • Reduced waiting times for MS diagnosis through one stop neuro-inflammation clinic.
  • Reduced waiting times for contact and appointments, especially those people experiencing relapses or acutely deteriorating symptoms
  • Reduced waiting times for MS nurse appointments for people newly diagnosed with MS
  • Improved capacity for rapid access for DMD assessments for potentially eligible patients
  • The team has been able to recruit additional nurses through a convincing, evidence-based business case
  • Improved access to MS care and treatment in the community
  • Improved DMD monitoring pathways – made safer and more efficient

What needs to be in place for the model to work best?

  • An MS specialist nurse available for on call days
  • Sufficient administrative and coordination support
  • Efficient triage system
  • A well collaborative team of MS nurses and MS neurologists.
  • Neuro-Rehab and Psychology support
Joint working between physiotherapy and local leisure services social enterprise to improve fitness and function (QuDoS award winner 2015)

Name of team, and area

Lorn and Islands Physiotherapy service and Lorn and Oban Healthy Options

Argyll and Bute, NHS Highland

Brief description of the model

This model was developed as to enable people with MS who are referred for physiotherapy to improve their levels of activity and function through engaging with a local community health initiative which encourages people to get healthier and fitter through participation in a flexible programme of activities. This is a response to the fact that physiotherapy services are thinly stretched across this very rural area and enables people with MS to take part in activities close to home which fit with their lifestyle.

Background

Neurology services for people in Argyll and Bute are provided via SLA from the Greater Glasgow and Clyde Health Board. In practice this means a round trip of 200 miles to see a consultant in Glasgow, although there is now a locally based MS specialist nurse. Rehabilitation services given these distances are impractical for most people with MS. Limited resources within the physiotherapy department in Oban prevented the delivery of a community based rehab service for people with MS.

Lorn and Oban Healthy Options is a community enterprise initiative set up to improve the health of people with long term conditions. LOHO employs exercise instructors who use their skills to provide training programmes in a variety of locations including the local leisure centre, outdoor facilities and people's own homes.

The collaboration between NHS and third sector services to develop this pathway now allows for local rehabilitation for people with MS and a seamless service from hospital and other NHS services into a community setting utilising existing community resources. People with MS now have a real say on where and how they have their rehabilitation delivered

How it works

The aim of the pathway is to de-medicalise rehabilitation, improve access to services and to allow people with MS to improve their health and function in the same environment as the rest of the community. As the service has developed we have added additional elements including a weekly low level exercise class within the local MS therapy centre with individual exercise programmes for people unable to fully utilise leisure services.

Many people are now accessing mainstream leisure services to manage and improve their own physical symptoms who otherwise would have felt unable to utilise the facilities. Governance remains the responsibility of the referring physiotherapist and ongoing training and support is provided for the exercise professionals.

Details about the team

  • Caseload: All people with MS in the locality (approx 50 -70)
  • Area: Oban, Lorn and Islands area, Argyll
  • Type of area: Rural area with some isolated Islands
  • No. of MS nurses: Service set up prior to an specialist nurse availability 0.5 WTE now covers the whole of Argyll and Bute

Who is the care aimed at?

All people with MS in the area – newly diagnosed, post relapse or simply following a decline in function.

How was it implemented?

The physiotherapist delivers training to the lead exercise professional and the rest of the LOHO team: this includes topics such as neuroplasticity, skill acquisition, cardio respiratory health, and MS specific issues such as fatigue and continence. He also undertakes regular joint assessments of patients.

Ongoing training and support is provided and service evaluated by patient feedback.

What are the benefits of working in this way?

  • Ensures access to local rehabilitation services for all people with MS
  • Ensures rehabilitation is patient and community centred
  • Improves self management skills and confidence
  • Supports people with MS to access local leisure services
  • Cost effective use of resources: through this model the physiotherapist is able to keep 20-30 people with MS under active treatment with about one day per week of physio input.

What needs to be in place for the model to work best?

  • Exercise professionals with an interest/remit to support health services
  • Leisure services (Gym/swimming pool etc.)
  • Physiotherapy services with expertise in neurology assessment
  • Good working relationship between Health and leisure service staff
  • Clear and agreed governance structure
Joined up thinking: setting up a successful Multiple Sclerosis Urology Service

Name of team, and area

Sheffield MS Specialist Nurse Service

Sheffield, South Yorkshire and North East Derbyshire

Brief description of the model

Background

The MS nurse service identified a need to improve care for people with MS experiencing neurogenic bladder symptoms that would be specific and streamlined for people living with MS-related urological problems. Liam Rice, MS specialist nurse, led on this work, identifying Miss Reid – a Consultant Urologist working within the Spinal injury service – and collaborating with her to design efficient and effective pathways and protocols to better manage the care of people experiencing urological problems due to MS in the area covered by the Sheffield MS nurse service.

How it works

  • Defined, individual pathways were implemented to manage particular urological symptoms and problems, and established joined-up care between the MS specialist nurse service and the Consultant Urologist.
  • All members of the MS multidisciplinary team are able to directly refer people with MS to this specific service.
  • Referrals are reviewed by an MS specialist nurse and triaged into either nurse or joint consultant and nurse led urology clinics or MS clinics as appropriate.
  • There is one joint consultant and MS nurse clinic per month and two nurse-led clinics per month.
  • Both the MS nurse-led and joint nurse-urologist clinics see 14 patients per month each.
  • The nurse-led clinics are run by Liam Rice, MS nurse, and a Healthcare Assistant, the joint clinics are run by Liam Rice, MS nurse, and Miss Reid, Consultant Urologist.
  • Everyone seen in these clinics have a full bladder review, post void residual bladder scan and examination if required.
  • Each referral is sent to the MS nurse with full description of a patient's details and issues that need to be discussed.
  • Issues, management and potential treatment of symptoms are discussed with patients by the MS nurse.
  • Any requests for Ultrasound scan (USS), flexible Cystoscopy and general review are made by MS nurse and are carried out by the Urologist.
  • Everyone seen in these clinics are reviewed, face to face, in the appropriate follow up clinic – MS nurse or Urology.
  • Liam Rice led on the development of service leaflets for patients outlining the services available and how to self-manage symptoms, as well as supra pubic catheter insertion.

Details about the team

  • Caseload: approximately 3000 people with MS
  • Area: South Yorkshire, and North East Derbyshire
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 5.6 WTE MS specialist nurses

Who is the care aimed at?

People with MS with neurogenic bladder issues

How was it implemented?

  • In 2014, Liam and Miss Reid identified that joint working between the Urology Consultant and MS nurses could improve the management of urological problems in people with MS.
  • Liam studied various literature and existing protocols to support the development of a series of pathways to potentially set up a joint MS Nurse and Urology service.
  • Liam and Miss Reid approached Business Managers from both Neurology and Urology with proposals to set up a collaborative service across the two directorates.
  • Liam and Miss Reid also approached the Radiology service to assist with supra pubic catheter insertion.
  • To implement these pathways, Liam:
    • Approached both Urology and Neurology Directorate business managers
    • Wrote a business plan
    • Ensured the rest of the MS Nurse team were happy for his role to encompass this particular role, and organise appropriate backfill as necessary and appropriate
    • Worked in collaboration with the Urology Consultant on each pathway
    • Secured clinic space and set up clinic codes
  • At the time of writing, Liam is currently auditing the impact and value of this specific care pathway through a patient questionnaire. Selected results from this audit will be published in a journal article in 2018.

What are the benefits of working in this way?

  • Through established pathways the MS Urology service can review, implement and follow up interventions around urological problems in people with MS.
  • A joint approach between the MS nurse service and the Urologist has been established. This has enabled an exchange of ideas, knowledge, and practices which has been mutually beneficial to the professional development of clinicians in both services, whilst establishing a supportive working environment.
  • The MS nurse service is able to offer patients a dedicated and focused service which address their specific needs with regards to urological problems.
  • This way of working has taken a lot of pressure off the local continence service, who recognise this as an enhanced service for patients with MS, and utilise the pathways when appropriate.
  • People with MS receive joined-up, coordinated care from two specialist services that successfully interact and collaborate with one another. Over 300 patients have been treated through these pathways since they were set up, just over 3 years ago.
  • Improved self-management and understanding of urinary issues amongst people with MS.
  • Reduced number of UTIs experienced by people with MS, which often have a significant effect on MS symptoms and may lead to emergency admissions, which are costly to the NHS.
  • People with neurogenic bladder symptoms are more likely to be treated in an appropriate manner and given individualised guidance on symptom management.

What needs to be in place for the model to work best?

  • A joint collaborative approach between Consultant Urologist and MS specialist nurse service
  • Good communication between management in both Urology and Neurology Directorates
  • Admin support, and staff who understand the specifics of the service and the referral process
  • Opportunity to develop and change service accordingly
  • Clear documentation on the pathways (including evidence of the benefits) to enable this service to be established in the long term. This will build resilience within the workforce by developing the expertise of others in the team in this area, which is particularly pertinent in ensuring the longevity of these pathways even after the current innovators have moved on from the service.

This model of innovative practice was featured in the local press following publication on the MS Trust website (Sheffield Star, 24 January 2018).

Setting up an Acupuncture clinic for neuropathic pain in Multiple Sclerosis

Name of team, and area

Sheffield MS Specialist Nurse Service

Sheffield, South Yorkshire & North East Derbyshire

Brief description of the model

Background

The team became aware of a high proportion of patients waiting a significant length of time to have a consultation with a Pain Specialist Nurse for treatment. Daisy Cam, MS specialist nurse, had seen the benefits that a number of patients had from Acupuncture, and secured funding to train in this field. Daisy collaborated with the pain nurse and a pathway was set up for Acupuncture for the treatment of pain in MS. The two services believed this would improve the service offered and also reduce waiting times.

How it works

  • Following an initial consultation with the Pain Specialist Nurse, a direct referral to the MS Acupuncture clinic is made once this has been determined as a suitable treatment
  • Defined, individual pathways were implemented to manage symptoms
  • Patients who attend this clinic are reviewed by a Pain Specialist Nurse annually
  • Patients are seen every 8 -12 weeks in the MS Acupuncture clinic where treatment is carried out by the MS nurse
  • The clinic runs monthly, and approximately 6-8 patients are seen in each clinic
  • There is regular correspondence with patients' GPs and Consultants to make them aware of the treatment decision and progress

Details about the team

  • Caseload: approximately 3000 people with MS
  • Area: South Yorkshire, and North East Derbyshire
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 5.6 WTE MS specialist nurses

Who is the care aimed at?

People with MS who have neuropathic pain

How was it implemented?

The clinic was established in 2011 by Daisy Cam, MS nurse. To implement the clinic and the care pathway for Acupuncture treatment for people with MS experiencing pain, Daisy had to:

  • Write a business plan for managers within the neurology directorate
  • Liaise with business managers with a view to outlining the income generated through this new activity
  • Apply for funding to fund the Acupuncture training (in Daisy's case, this was through hospital charity funding, as she was not able to obtain the funding through the neurology department at the time)
  • Undertake Acupuncture training (Daisy also took an additional BA module in Pain Management) and shadow the Pain Specialist Nurse
  • Ensured the rest of the MS Nurse team were happy for her role to encompass this particular role, and organise appropriate backfill as necessary and appropriate
  • Secured clinic space and set up clinic codes
  • At the time of writing, Daisy is currently auditing the impact and value of this specific care pathway through a patient questionnaire, with CEU approval. It is hoped that results from this audit will be published in 2018. The audit covers Pain scales, Quality of Life scores and Impression of Change scores in measuring and collecting patient outcomes.

What are the benefits of working in this way?

  • A joint approach between the MS nurse service and the Pain Nurse has been established with a regular exchange of ideas, practises and support.
  • The service is able to offer people with MS a dedicated Acupuncture service which addresses the patients' individual neuropathic pain needs.
  • Less pressure on the Pain Nurse, freeing up her time to see new referrals.
  • Decreased waiting times for people to see the Pain Specialist Nurse service.

What needs to be in place for the model to work best?

  • A locally-based Pain Specialist Nursing service.
  • Resource to train an MS nurse in Acupuncture treatment.
  • A joint collaborative approach between the Pain Specialist Nurse and the MS Nurse service.
  • Good communication between management in both the Pain service and Neurology directorates.
  • Opportunity to develop and change service accordingly.
Using clinic letter templates to communicate effectively with patients and GPs

Name of team, and area

Southampton MS Team, University Hospital Southampton

Southampton and surrounding area and islands

Brief description of the model

Background

Document templates are often an essential tool for MS Health Professionals in communicating with patients and with other Professionals, such as GPs or consultants. The Southampton MS nurse team identified a need for a template for clinic letters, to ensure that people with MS and their GPs have all the information they need.

How it works

Download a copy of the MS nurse follow-up clinic consultation template letter (DOC, 20KB).

The letter is written by the MS nurse after the consultation, and may be sent by post, fax or email to the patient's GP, as well as the patient themselves, and anyone else who needs to be copied in, such as the patient's neurologist.

The MS nurse completes the template based on the discussion in the consultation, adding details and notes where required. The template is designed to cover all areas, so the nurse using this template may not need to complete all sections. The clearly defined sections allow the GP to quickly identify the information they need.​

Details about the team

  • Caseload: approximately 1200 people with MS
  • Area: Southampton and surrounding area and islands
  • Type of area: urban, rural and coastal
  • No. of MS nurses: 3.4 WTE

Who is the care aimed at?

Any person with MS who is seen by the MS nurse service

How was it implemented?

The template was designed by Mavis Ayer, an MS specialist nurse. The template was reviewed and contributed to by her team, and tested with a small number of patients seeing the service, before it was routinely rolled out.

Members of the team have adapted the template letters and have made it their own.​

What are the benefits of working in this way?

  • Promotes self-management
  • Outlines a clear care plan
  • Provides essential information for patients and their GPs
  • The template is to be used as a guide, so can be tailored to each individual
  • The template is designed to be holistic and comprehensive, covering all aspects of life with MS
  • Provides consistency across the service (assuming all members of the team are using the template)

What needs to be in place for the model to work best?

  • The template is in a format that the team can easily use
  • The template is in a format that GPs can easily open / read
  • The template is used consistently by the whole team
  • Input into the design / sections of the template by the whole team and, if possible, from people with MS too
  • Desirable: strong existing communication between the team and local GPs
  • Desirable: the template is in a format that may be easily uploaded to a patient's electronic health record

Read more about Mavis' experience of setting up and using the template, as well as her top tips, in edition #3 of MS in Practice.

Improving the efficiency of a DMD service

Keeping track of monitoring and reducing MS specialist nurse time on DMDs

Name of team and area

St George's

South west London and north Surrey

Brief description of the model

Summary of key features

  • People visit the monitoring clinic, which runs twice-weekly, when they need a check-up according to the disease modifying drug (DMD) they are taking.
  • The administration of the monitoring clinic is organised by the MS team coordinator. It is a virtual clinic but there is always an MS nurse available for people visiting the clinic to ‘drop in' if they have any questions or concerns.
  • Everyone who visits the clinic has a monitoring card (kept in the department) – a physical record which is printed onto different coloured card depending on which drug is used.
  • These cards contain core details – personal details, consultant and nurse details, and drug information. Crucially, they say what monitoring is due and when.

Why this is different to other DMD monitoring models

  • People don't see an MS nurse face to face every time they come for their monitoring, which frees up nurse time. People still have regular face to face reviews with the MS nursing team independent of the monitoring clinic.
  • The monitoring process is centralised through an MS coordinator, working closely with two MS Therapies nurses. This allows for efficient and consistent practice.
  • As appointments are booked via a clinic booking system. Attendance, and importantly, non-attendance is automatically recorded in a timely and efficient manner.

How it works

  • Once a patient has been prescribed a DMD: a 'treatment agreement' between the patient and MS nurse is confirmed. This states frequency of monitoring of the DMD in question. Patients are offered a choice of which day of the week to attend the clinic.
  • Day before the clinic: MS coordinator checks the clinic list and allocates flexible clinic slots. She orders relevant blood tests online and sends the blood requests and urinalysis forms to the neuro outpatients department ready for the following day. The MS specialist nurse double checks the requests for accuracy. Patients receive a text message reminder of their monitoring clinic appointment.
  • Day of the clinic: Patients attend neuro outpatients if they require a urine test or blood pressure reading which is performed by a healthcare assistant (HCA). MS nurses are available to check urinalysis results and ad hoc questions. Patients just requiring blood tests can go straight to phlebotomy, which is available at three different sites. The flexible clinic slots allow patients to attend the clinic at any time of the day. One of the phlebotomy services is also open on a Saturday morning.
  • Day after the clinic: An MS Therapies nurse reviews the blood and urine test results. If the results are within set parameters no further action is taken. If outside the set parameters time is allocated to discuss this with a consultant neurologist on the same day. Patients and GPs are notified about abnormal results. The clinic admin team then send patients next appointment date. People are unable to reschedule their appointment other than through the MS team, ensuring that no one is lost to follow up.

Details about the team*

  • Caseload: 1050 people with MS
  • Area: South west London and north Surrey
  • Type of area: urban, densely populated
  • No. of WTE MS nurses: 3.2 WTE MS specialist nurses (+2 MS Therapies nurses and 1 MS coordinator)

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People on or starting DMDs

How was it implemented?

  • Based on the model used in St George's Rheumatology Service – used this for guidance

Why the service was set up

  • Increased (and increasing) number of people on DMDs
  • Increased complexity of DMD monitoring regimens
  • Concern for safety regarding monitoring: with lots of different MS specialist nurses managing monitoring for individual caseloads, there was a risk of things being done inconsistently and people being missed if an MS nurse was away.

What are the benefits of working in this way?

  • Monitoring doesn't rely on a computer system – low cost and low tech and easily accessible to all members of the team.
  • Helps to ensure the service is safe – a sustainable model for ensuring correct follow up. Responsibility for monitoring lies with MS nurse team, rather than GP. Arguably, this is preferable as GPs often have little understanding about drugs and the complex monitoring that goes with many of them.
  • The different coloured cards provide a very quick visual reminder of which DMD each person is on. This is useful for the clinic team, and saves time.
  • People can attend for blood monitoring at a time of their choosing and it's a very quick visit as they only need to see a phlebotomist (and possibly a HCA for urine test if required). This is beneficial to both the person attending for monitoring and for the service.
  • Generates income as there is a tariff for the clinic

What needs to be in place for the model to work best?

  • Good communication between different teams – MS nurses, neuro outpatients reception team, phlebotomy, MS team coordinators and HCAs
  • Sufficient administration and coordination assistance
  • Careful scheduling to ensure a consultant is available the next day to discuss abnormal results or any other issues raised during the clinic
MS nurse prescribing for repeat DMD prescriptions and symptomatic therapies

Name of team and area

MS service at Sunderland City Hospitals

Sunderland and surrounding area

Brief description of the model

Barbara Wingrove, a senior band 8 MS nurse consultant, is an independent nurse prescriber for the MS service in Sunderland. She received extensive training for this qualification, which took approximately 6-9 months of study, and, as a result, is able to distribute repeat prescriptions for disease modifying drugs (DMDs) without input from a consultant neurologist. Barbara does not initiate DMD treatment, but is responsible for the repeat prescription and monitoring process. Once DMDs have been prescribed, the consultant is no longer involved in the repeat prescriptions. The role also allows her to inform GPs of what to prescribe and is able to order MRI scans where necessary. Patients are able to access their treatments quickly through the hospital's E-prescription service, and through outpatient prescriptions. She also prescribes medicines for symptom management, from pain to continence, and steroids for relapses (which can be accessed within three days of the relapse assessment appointment). Antibiotics and drugs for spasticity are also within Barbara's prescription remit. She ensures that she only signs repeat prescription forms when she is completely confident that the process is entirely safe. If she has any doubts whatsoever, she will consult the neurologist for advice. All her prescriptions are also double checked by the hospital pharmacist team.

Details about the area and case load covered by the team*

  • Caseload: 848 people with MS
  • Area: Sunderland and surrounding area
  • Type of area: mostly urban
  • No. of WTE MS nurses: 1 full time MS nurse

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

Anyone on DMD treatment under the care of the Sunderland MS service

How was it implemented?

Barbara completed her training in 2000, and has been an independent prescriber since. She strongly advocates for the benefits of this training for band 7 MS nurses, and makes the case for other MS nurses to be funded for this course as well.

What are the benefits of working in this way?

  • More efficient DMD care pathway for people on treatment – faster access to DMDs and people have one named contact for DMD repeat prescriptions
  • Great deal of time saved by this way of working as the repeat prescribing process is streamlined and requires fewer neurologist appointments
  • Reduced pressure on neurologists
  • Closer relationship between MS nurse service and the local GP networks
  • Improved GP understanding of DMDs, prescriptions and potentially of MS in general
  • Safe prescribing (in fact, Barbara suggests this way of working may even be safer, as MS nurses often have a more in-depth understanding of individuals, their symptoms, lifestyles, and of the likelihood of the degree of adherence to drug monitoring regimes)
  • Having this increased responsibility also helps to protect against possible threats to band 7 posts

What needs to be in place for the model to work best?

  • Sufficient administrative and coordination support
  • Time and funding for the six month prescribing course
  • Close links to MS neurologists
  • Close links to local GPs
  • Efficient and effective 'in-house' prescription/pharmacy services
Discussion group clinics for people starting fingolimod

Name of team and area

Queen Elizabeth Hospital, Birmingham, MS team

West Midlands

Brief description of the model

Background

Fingolimod (Gilenya) was the first oral disease modifying drug (DMD) to be licensed and approved by NICE, in 2012. The once-daily oral drug is most often prescribed for people with relapsing remitting MS who are not responding well to a first-line DMD, such as beta interferons.

The Queen Elizabeth Hospital MS nurse team is responsible for the prescription and monitoring of fingolimod for people on the drug across the West Midlands. The team works closely with other local hospitals and has a comprehensive and effective pathway in place for the administration of the DMD.

Part of the pathway includes an 'information and screening clinic' for people who have been identified as eligible for the DMD and would like to proceed with the treatment. The format for this is an information and discussion session, involving up to 5 patients in the same position.

How it works

  • 2-4 weeks after someone is deemed eligible for fingolimod, and decides to go ahead with the treatment, they are invited to attend an appointment at the hospital.
  • At this appointment, they are seen individually for screening, including cardiology testing, before participating in a 2 hour discussion and information session. As many as 5 patients may attend each screening and information clinic. Attendees are invited to bring a family member, partner or friend, should they choose.
  • MS nurses present key information regarding taking the DMD, but the sessions are interactive and attendees are encouraged to ask questions throughout. Information covered includes:
    • The screening process, the first dose and the need for cardiac monitoring
    • How the DMD works
    • Possible side effects
    • Adherence
    • Ongoing monitoring
  • MS nurses take this opportunity to confirm people's understanding and expectations of their treatment.
  • Following the group discussion, the MS nurses see the participants again on an individual basis to ensure each patient has a full understanding of the treatment and provides the opportunity to ask any questions people hadn't wished to raise in the group setting.
  • The clinic is regularly audited, with two surveys carried out between December 2013 and March 2015. The respondents (n=100) valued the clinics very highly, on the whole.
    • 98% of respondents said the length of the discussion group was 'Just right'
    • 97% said the amount of information provided was 'Just right'
    • 46% said the day was 'Better than I expected'
    • "[I could] ask questions in a 'safe' environment"
    • "a relaxed discussion and all information was interesting and informative"
    • "questions you may not have thought of were asked by others"

Details about the team*

  • Caseload: approximately 1600, over 200 people on fingolimod treatment
  • Area: Birmingham and West Midlands
  • Type of area: densely populated and urban
  • No. of MS nurses: 4 full time nurses (and 2 consultant neurologists with a special interest in MS)

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People in the West Midlands area starting fingolimod

What are the benefits of working in this way?

  • People are seen both as part of a group and individually
  • Group setting allows for discussion and questions which some participants may not have asked themselves
  • Saves MS nurse time – up to 5 patients (and their relatives/partners/friends) receive relevant information at the same time
  • Improved knowledge and understanding of the DMD, and its monitoring requirements
  • For screening and information, people only have to visit the hospital once, for this 2 hour session. For those whose local hospital is not the Queen Elizabeth, this is particularly beneficial

What needs to be in place for the model to work best?

  • Administration support to co-ordinate management of patient appointments
  • Clear and defined pathway for people starting fingolimod
  • Good coordination between the main DMD centre (in this case, Queen Elizabeth hospital) and other local hospitals
  • Clear information for people with MS so they understand the process and purpose of the sessions

Further information

Dispensing DMDs through hospital pharmacy as an alternative to homecare

Name of team and area

City Hospitals Sunderland MS Team and 'CHoICE Ltd' outpatient pharmacy

Sunderland and surrounding area

Brief description of the model

Background

Disease modifying drugs (DMDs) for MS are funded by NHS England through specialised commissioning, as described in the MS Trust Funding for MS services in England: a practical guide report.

Historically, in common with most MS services, DMDs for people with MS in Sunderland were dispensed through a number of Homecare companies who held contracts with the pharmaceutical companies to provide this service.

The MS and pharmacy teams at City Hospitals Sunderland NHS Foundation Trust [CHSFT] were well aware of the numerous issues surrounding this system. These included: the inconvenience of having to ensure someone was home all day to receive the delivery; the companies not always being easily contactable by patients and the MS team; potential clinical risks of prescribers having diminished control over the dispensing of the drugs; and occasional delays in people receiving prescriptions. These difficulties resulted in many queries about Homecare deliveries coming through to the MS team, creating time-consuming additional administration. In 2014, additional pressure was put on the Homecare system due to one company going into liquidation.

At the same time, CHSFT set up a subsidiary private company called 'CHoICE Ltd' to provide outpatient pharmacy services. As well as providing people with the choice of Homecare delivery or having their medicines dispensed by the hospital pharmacy, this also meant that DMDs could be dispensed in the same cost effective manner as Homecare with net prices lower than those available to the NHS.

How it works

  • 'CHoICE Ltd is a wholly owned subsidiary company, with the Foundation Trust being the sole shareholder. The company was set up to operate the Outpatient Pharmacy services of the Foundation Trust, this allowed the company to reclaim VAT on its purchases in the same way a high street pharmacy operates. This tax efficiency allows focussed investment in improving patient services.
  • Early on, engagement with the MS Specialist Nurse enabled the Outpatient Pharmacy team to support specialist teams within the hospital prescribing high cost drugs to match services to patient needs. People on DMDs now have the choice of whether they would prefer to pick up their prescriptions from 'CHoICE Ltd' when they attend for their regular review or have them delivered – whatever suits them best.
  • For those who choose to collect their DMDs, the MS nurse and the CHoICE pharmacy team work closely together to ensure that dispensing DMDs is as convenient as possible by planning monitoring and prescribing in advance. When patients come to the hospital for monitoring, the CHoICE pharmacy are already aware and dispense their prescription then and there – a 'one stop shop'. People on DMDs have a reliable contact for queries about or problems with their prescriptions. This system is arguably more secure and reassuring for people on DMDs.
  • CHSFT negotiated a payment arrangement with the commissioners, which allows them to benefit from some of the savings made. From these savings, the hospital takes payment for the work involved in setting up 'CHoICE Ltd', while the commissioners also benefit from a proportion of the savings made.
  • Some people may be given longer prescriptions, which avoids excessive visits to the hospital to collect their medicines.
  • Where people have opted for home delivery, pharmacists still have significant involvement in the process, minimising risks as much as possible.
  • City Hospitals Sunderland is not the only Trust in England making use of outsourced pharmacy services to dispense DMDs. For example, Imperial College Healthcare NHS Trust in London is operating a similar collection model using the outpatient pharmacy which is operated by Lloyds Pharmacy.

Details about the team*

  • Caseload: 848 people with MS, approximately 150 of whom are on DMDs
  • Area: Sunderland and surrounding area
  • Type of area: mostly urban
  • No. of MS nurses: 1 full time MS specialist nurse and 6 neurologists who see people with MS

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People with MS on DMDs. This system also benefits people with other conditions on high cost drugs.

What are the benefits of working in this way?

  • Flexibility and convenience for people on DMDs
  • Sustained clinical responsibility of expert pharmacists
  • Greater control over DMDs being dispensed by MS nurse and pharmacy team
  • This system has not yet been audited, but anecdotally the MS nurse has been told by her patients that this is more convenient on the whole. All patients on the caseload have opted for the CHoICE Ltd option, apart from those using Copaxone, as the manufacturer only offers this via Homecare.

What needs to be in place for the model to work best?

  • Close links between the pharmacy and MS teams and time taken to collaboratively plan the implementation of such a system
  • Clear understanding of the needs of and problems faced by both the pharmacy and the MS teams
  • Point of contact within the pharmacy for people with queries about or problems with their DMD prescriptions
Ensuring compliance and education around DMDs: treatment checklists

Name of team and area

Queen Elizabeth Hospital, Birmingham, MS team (University Hospital Birmingham NHS Foundation Trust)

West Midlands

Brief description of the model

Background

The Queen Elizabeth Hospital MS nurse team provides management and monitoring of MS disease modifying drugs (DMDs) across the West Midlands area, for approximately 1750 people. For roughly 6 years now, the team has been using checklists to ensure people starting DMDs fully understand the (sometimes complex) implications and monitoring requirements of DMDs, and that the MS nurse conducting the consultation is covering everything.

How it works

  • The MS nurse team runs group discussion clinics* on each DMD, which include time for 1:1 consultations between each individual in attendance and an MS nurse. During this 1:1 session, the MS nurse will use a standardised checklist to ensure the person with MS has fully understood everything they need to know regarding the DMD they will be starting, such as the monitoring requirements and possible side effects.
  • These education sessions run twice a month for each type of DMD (first line injectables / oral tablets, alemtuzumab and fingolimod), excluding natalizumab, which is covered in individual appointments. The checklists are mainly used at these opportunities, but may also be used in 1:1 consultations.
  • The checklists cover the wide range of topics required for education of people starting DMDs, such as:
    • Understanding of pre-treatment monitoring
    • Knowledge of potential side effects
    • Monitoring requirements
    • Understanding of prescription/dispensing/collecting of treatment
  • Checklists are adapted to each DMD.
  • After the nurse has gone through the checklist, both the MS nurse and person with MS sign the document, similar to a 'treatment agreement'.
  • Patients are sent a copy of the checklist after the consultation, for their reference, and they are encouraged to take it to other appointments with other health professionals which may address their DMD treatment. The MS nurse files the checklists so the team are able to refer back to these in future if necessary.
  • People starting a new DMD are also sent the MS Trust's 'Disease modifying drugs' booklet, along with other (drug-specific) resources, before attending the education sessions, providing another source of information for people to refer to.
  • As the Queen Elizabeth Hospital is the regional hub for DMD management, MS nurses in the peripheral ('spoke') centres also use these checklists – all the centres in the area follow the same DMD pathway.
  • The two lead MS nurses in the Queen Elizabeth team review the checklists at least once every two years and ensure all the elements covered in them are up to date. Ad hoc changes are also made when necessary.

*Read more about these in another case study on this page – see 'Discussion group clinics for people starting fingolimod'.

Details about the team*

  • Caseload: approx. 1600 people with MS (approx. 1750 people on DMDs in the whole West Midlands area)
  • Area: Birmingham and West Midlands
  • Type of area: densely populated and urban
  • No. of MS nurses: 4 full time nurses (and 2 consultant neurologists with a special interest in MS)

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

Who is the care aimed at?

People in the West Midlands area starting or switching DMDs

What are the benefits of working in this way?

  • Both the person with MS and the MS nurse team have a record of what was covered in the initial consultation regarding starting a new DMD. This is useful to refer to later for both parties, especially if queries/issues arise.
  • Feedback from attendees has shown that people appreciate the 1:1 consultations of the group education sessions, which are guided by the checklist.
  • As all the MS nurses involved in the West Midlands DMD pathway are using the same checklists, all members of the team are giving the same information to people starting new DMDs. The team can be content that they're all 'singing from the same hymn sheet', as it were.
  • All parties can be confident that comprehensive and correct information and education has been provided from the start of the process.
  • In the long term, this approach saves time through effective education and as a useful reference point both for nurses and people on DMDs.
  • The checklist can be a useful tool for MS nurses in training learning about MS DMDs.

What needs to be in place for the model to work best?

  • Time set aside to review at regular intervals (e.g. as part of wider service development discussions for instance)
  • The checklist works well as part of the group education sessions, but is also a useful tool for individual consultations/clinic appointments
  • Easily implementable – a simple word document which can be amended and adapted

If you would like to see a sample copy of one of the checklists, please email hpteam@mstrust.org.uk.

Treatment agreements for people on disease modifying drugs

Name of team and area

Frimley Health MS nurse team (based at Frimley Park Hospital)

Covers areas of Surrey, Hampshire and Berkshire

Brief description of the model

Background

In 2016, the Frimley Health MS nurse team implemented a new element to the pathway for people starting disease modifying drugs (DMDs). This consists of a formal 'agreement' between the individual starting a new DMD and the MS nurse conducting the consultation. At the time of writing, the team currently use these contract-style documents for people starting two DMDs – fingolimod (Gilenya) and dimethyl fumarate (Tecfidera) – but plan to use the same process for the other drugs too, in the near future.

How it works

  • The documents cover the following aspects:
    • Brief introduction to the DMD: how it is administered – the risks and benefits
    • Monitoring requirements
    • Potential side effects
    • An agreement of the individual to adhere to the monitoring requirements and maintain regular contact with the MS nurse service, alerting them to any potential problems
  • During the initial consultation prior to starting a new DMD, the MS nurse provides information and education about the treatment and risk benefit, and emphasises the fundamental importance of monitoring. At the end of this face to face appointment, the MS nurse goes through the agreement document in detail, ensuring that the person with MS clearly understands the content. Once both parties have confirmed their understanding, the individual starting the DMD and MS nurse sign the document, and the patient receives their own copy.
  • As well as a copy for the person starting the DMD, the MS nurse team also scans a copy and saves this to the individual's electronic patient record.
  • The MS nurses emphasise the essential importance of adhering to monitoring requirements, and the team uses a 'no bloods, no drugs' mantra, resulting in a high adherence rate.
  • The agreement document was written in clear and comprehensive language to ensure full understanding.
  • The documents are used by the MS nurses, as the health professionals responsible for DMD initiation, monitoring and education.

Details about the team

  • Caseload: approximately 700 people with MS, with approximately 350 people on DMDs
  • Area: Covers areas of Surrey, Hampshire and Berkshire
  • Type of area: a mix of rural and urban areas
  • No. of MS nurses: 3 MS specialist nurses (2.2 WTE) and a full time MS coordinator

Who is the care aimed at?

People with MS on DMDs under the care of the Frimley Health MS nurse team (which covers parts of Surrey, Hampshire and Berkshire). The team also provides MS care and prescribing of DMDs for military patients who may be out of area and are based all over the UK.

What are the benefits of working in this way?

  • Emphasises the importance of adhering to monitoring requirements
  • Point of reference and information for the individual starting the DMD - the agreement document may also be taken to appointments with other health and social care professionals who may be involved in an individual's MS care
  • People on DMDs take greater responsibility and an increased role in the management of their MS and the medication they are taking. This promotes a trusting, collaborative partnership approach between people with MS and the MS nurse team
  • People have a good understanding of the DMD they are taking, and the potential risks/side effects surrounding this
  • So far, people starting DMDs on the team's caseload have embraced this process and there has not been any negative feedback thus far
  • Provides a reference point for both MS nurses and people with MS on DMDs to refer to should queries or issues arise
  • Copies of the agreement are easily accessible for the MS nurse team as they are uploaded to individuals' electronic patient records

What needs to be in place for the model to work best?

  • Admin support is beneficial
  • Support from and collaboration with consultants
  • Ease of access to an electronic copy of the signed document can be useful
  • Multidisciplinary collaboration – ensuring that the whole MS team is aware of this process, and has had input into the design and wording of the agreement, to ensure nothing has been missed

If you would like to see a sample copy of one of the treatment agreements, please email hpteam@mstrust.org.uk.

Setting up a new DMD prescribing centre at a 'spoke' hospital

Name of team, and area

Imperial College Healthcare NHS Trust and Hillingdon Hospital NHS Trust

West London

Brief description of the model

Background

Due to a historic close working relationship, Hillingdon Hospital has for many years offered a DMD service (for a limited range of DMDs) as a 'spoke' of the neuroscience centre at Imperial College Healthcare NHS Trust (Charing Cross Hospital). At that time, the Hillingdon service had one MS specialist nurse and an MS consultant, who also worked at Imperial, but the service was not recognised by NHS England as a prescribing centre. As a result, certain prescriptions had to be issued by Imperial as the 'hub', and Imperial claimed reimbursement for the drug costs from NHS England.

This required the Hillingdon MS Service to refer people starting DMDs to the MS nurses at Imperial (and allocate them an Imperial hospital number) so that the DMDs could be prescribed from there.

Imperial retained responsibility for ongoing reporting (though Blueteq) and prescribing for Hillingdon patients, and the safe monitoring of their DMDs, whilst having no direct clinical responsibility for their ongoing care.

Disadvantages of this arrangement

  • It was inefficient. The process involved Imperial MSSNs and pharmacy in an administrative process to set up patient records, generate prescriptions and check on monitoring without any clinical benefit to the person with MS. Any queries from people with MS involved time consuming liaison between the two teams.
  • Clinical accountability was split. The prescribing Trust (Imperial) was not the same as the Trust delivering clinical input and monitoring for the person with MS (Hillingdon).
  • The arrangements were potentially confusing to people with MS. For example, people with MS with queries about home care deliveries or other aspects of their DMD prescriptions would not know whether to contact the team at Hillingdon or the team at Imperial (with whom they had no relationship).
  • Unnecessary increased workload for both Imperial and Hillingdon staff

How it works

Ground work

Prior to implementing the change the MS nurse at Hillingdon engaged with key stakeholders at the NHS Trust. These included business managers, clinicians and pharmacy staff. Hillingdon staff needed to explore the impact of the proposed change on the existing services and how it would cope with the additional demand. The service also needed to ensure it was robust enough to continue to provide a service to all MS patients, not just those on DMDs.

What changed

The Hillingdon and Imperial teams then worked together to make the case that Hillingdon should be established as a DMD prescribing centre in its own right, and to set up the systems to make this happen.

How was it implemented?

The planning and implementation of the new service was led by the Clinical Commissioning Pharmacist at Imperial working jointly with the Hillingdon MS team. Clinical Commissioning Pharmacists are senior pharmacists, funded directly by NHS England to plan and manage the use of the highest cost drugs funded under Specialised Commissioning in larger NHS Trusts. Whilst these posts started in London, they are now spreading to other parts of England. Under the pharmacist's leadership, the team formulated a plan for DMDs at Hillingdon encompassing four components:

  1. Making the case for the change
    The team described the vision for the service and explained why it would offer a better and more efficient service for people with MS in Hillingdon.
  2. Ensuring a funding stream for the DMDs
    The team identified the number of people with MS on different DMDs who saw the Hillingdon MS service and the associated NHS England expenditure on each DMD, both over recent years and projecting forward. This was important to ensure that NHS England could plan the appropriate budget allocation for the Hillingdon service.
  3. Demonstrating appropriate governance at the new prescribing centre
    The team described how people with MS who saw the Hillingdon MS service would have their DMDs prescribed and monitored, including local pathways and the fact that decisions about escalation and complex cases would be discussed within a formal cross-Trust multidisciplinary team meeting. Arrangements were made for Blueteq to be activated at Hillingdon and for a member of the team to be trained to enter the required data onto it.
  4. Ensuring capacity within the new prescribing centre
    Discussions were held with the Hillingdon pharmacy department to ensure that they were aware of the workload implications of dispensing and billing NHS England for DMDs locally.     

The MS service also needed to demonstrate that the changes could be incorporated into their service development plan. These elements were collated into a formal plan of action. This was shared and discussed with:

  • The contracts (or 'Service Level Agreement') managers in each of the two Trusts, who would need to communicate. These are non-clinical teams who negotiate contracts with the commissioners.
  • The supplier manager at the NHS England regional office (in this case both centres were within the same region, but if they had not been then the supplier managers within each region would have needed to be involved).
  • The Programme of Care lead at the regional office of NHS England.

Following discussion and agreement with all of these parties, a date was agreed for the establishment of Hillingdon as a new DMD prescribing centre.

Who is the care aimed at?

People with MS on DMDs under the care of the Hillingdon MS nurse service

What are the benefits of working in this way?

The establishment of the new prescribing centre has streamlined the process of prescribing, monitoring and delivery of DMDs for people with MS in the area. This is in line with medicines optimisation goal of bringing services closer to patients' homes. It has ensured that clinical accountability is clearly defined and has reduced unnecessary communication between the teams.

Development of the service provided at Hillingdon has had a positive impact. It has allowed ownership and responsibility for the entire pathway, helping to future-proof the service. It has also allowed staff to develop their knowledge around available treatments and to gain support from a wider multidisciplinary team in decision making and managing more complex cases.

What needs to be in place for the model to work best?

  • The new prescribing centre needed to ensure that it could describe clearly how it could manage DMDs safely and effectively. This includes formalised cross-Trust multidisciplinary decision making to ensure prescribing is in line with NHS England policy.
  • The availability of an NHS England Clinical Commissioning Pharmacist or equivalent within the 'hub' Trust and a willingness by the contracts managers within both Trusts to define and agree the new arrangements.
  • NHS Trusts without a Clinical Commissioning Pharmacist should engage with their local neurosciences pharmacist who can assist in identifying the most appropriate stakeholders to be involved.

Audit, evaluation and development

Developing a database for audit and evaluation to improve MS care (QuDoS in MS 2016 winner)

Name of team and area

Salford MS team, Salford Royal NHS Foundation Trust

Salford, Greater Manchester and surrounding areas

Brief description of the model

Background

To allow for the team’s involvement in the MS Trust’s GEMSS programme (2012-15), the Salford MS team worked with a neurology business analyst to develop a SharePoint database of the 3691 people with MS on the team’s caseload at the time. This was linked to the NHS Trust’s Electronic Patient Record base, and provided evidence to illustrate the value of the service.

How it works

  • The neurology business analyst worked with the MS team to facilitate a SharePoint database. This was then linked to the NHS Trust’s Electronic Patient Record (EPR) system, allowing the team to demonstrate a 6.3% increase in caseload per year.
  • The team are now also able to produce reports from this database, which has been used to evaluate and develop the service.
  • Following this, the team worked with an EPR Development Analyst, who created a note facility on the record system, allowing every aspect of the team’s involvement in the MS journey to be audited. The data generated from this formed the foundation for a business plan for service development.
  • This way of working allows the team to capture NICE standards and quality indicators in clinical practice.
  • Since the GEMSS programme, weekly (or more) meetings with the clinical and technical teams have taken place to enable both sides to gain a deeper understanding of the requirements and possibilities for translating this technology and way of working to daily practice in an easily usable format. Frequent feedback in this manner has allowed for almost instantaneous changes to the system.
  • The Greater Manchester MS database now contains over 4000 people, and facilitates real time data acquisition to influence service development and design. All interactions between people with MS and health professionals are integrated into the secure patient record system, encouraging more coordinated care for people with MS.
  • This extensive database has informed a business case for service redesign, which will provide career progression and succession planning.
  • In addition to this work, the MS nursing team have developed the GEMSS KPIs and integrated these into data collection tools. This provides evidence of quality of care delivered and benchmarking data for the service. This is also valuable for informing commissioners, and also people with MS in the area, and for obtaining user feedback and ongoing review/development.

Details about the MS nursing team*

  • Caseload: over 4000 people with MS
  • Area: Greater Manchester and surrounding areas
  • Type of area: mixture of both urban, densely populated areas and rural communities
  • No. of MS nurses: currently 6.73 WTE (7 nurses) plus 1 nurse consultant

*MS Trust survey of all MS specialist nurse teams, March 2016 undertaken for 'MS specialist nursing in the UK 2016: report on progress towards equitable provision'.

What are the benefits of working in this way?

  • The MS team has a comprehensive understanding of its current caseload
  • Accessible data to provide evidence of the value of the service
  • The team are easily able to create reports (for instance for commissioners) about their service
  • It is possible to capture NICE standards and quality indicators in clinical practice
  • Accessible, in-depth data (which may be used for proposals for service development, for instance)
  • Real time acquisition of data

What needs to be in place for the model to work best?

  • Access to technical analysts – a neurology business analyst and an EPR development analyst
  • Electronic Patient Record system in place
  • Involvement and engagement of the whole MS team
  • Understanding of current caseload
  • Access to effective and accessible data collection and evaluation tools
Using a Quality of Life checklist

Name of team and area

Chelmsford MS Team, Broomfield Hospital

South Essex and surrounding area

Brief description of the model

Background

Dr Helen Willis, MS Specialist Nurse at Broomfield Hospital, studied the use of the Multiple-Sclerosis Impact Scale-29 version two (MSIS-29v2) in clinic for her PhD thesis project. Her intention was to find out if assessing health-related Quality of Life (HRQoL) routinely in practice was feasible and valuable, and the results were positive. 311 people took part in the study.

How it works

​Helen found that using a tool like the MSIS-29v2 empowered patients to consider the psychological impact of MS, as well as measuring physical changes. The tool also provided a structured approach to reviewing the impact of MS on an individual. Structuring a consultation around this form provides people with the opportunity to review their MS holistically.

Participants were asked to complete the form in the waiting room prior to their consultation with an MS nurse. Each area is scored 1 – 4, allowing MS nurses to identify key priorities to discuss during the appointment. Patient-reported scores would also allow the team to tailor any therapeutic interventions or referrals.

Helen also reviewed the individuals' scores on the MSIS-29v2 before and after interventions, capturing data on where the service's input made a real difference.

Details about the MS nursing team

  • Caseload: 800 people with MS
  • Area: South Essex and surrounding area
  • Type of area: mix of urban and rural
  • No. of MS nurses: 1.6 WTE

Who is the care aimed at?

Any person with MS who is seen by the MS service

How was it implemented?

The tool was tested with 311 people and the MS nurse team worked together to integrate it into everyday practice.                                                                              

Helen split her study into two phases:

  • Phase 1: patients completed the MSIS-29v2 before each routine consultation
  • Phase 2: 15 participants who had attended two or more sessions were selected to be interviewed about their experience of the questionnaire. Three health professionals were also interviewed on their views and experiences.

What are the benefits of working in this way?

  • Feasible: patients were able to complete the form quickly and easily before their appointment
  • Valuable to patients: the structure of the MSIS-29v2 allowed patients to focus their thoughts so they could provide their healthcare professional with relevant information
  • Valuable to healthcare professionals: the assessment helped professionals to identify important issues, suggest interventions and monitor progress over time
  • Useful: it improved patient-clinician communication and helped patients become more aware of the impact of their condition

What needs to be in place for the model to work best?

  • Patience! "At the beginning, it does take a little bit longer, but I would really encourage people to persevere. Yes, you're changing the way you practice, but it is for the better!"
  • Printing facilities
  • Suitable waiting room space where patients could complete the form, ideally with support for those with visual problems and fine motor weakness

 

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