File with completed projects

One of the main objectives of the MS Trust is to provide funding for research that can make a difference to the lives of people who are living with MS now. 

Recent research projects have focussed on improving services, improving treatments and improving support.

Most recent completed project

The transition to secondary progressive multiple sclerosis

Dr Freja Davies, Dr Fiona Woods and Professor Adrian Edwards, Cardiff University

Aims

This research examined the experience of the onset of secondary progressive Multiple Sclerosis (SPMS) and the communication at the time, both from the perspective of the person with MS and their MS nurse and neurologist. Such research would greatly assist in designing improved services and information resources to help support people with MS through this very physically and emotionally challenging period.

Whilst disease modifying therapies exist as a treatment option for people with relapsing remitting MS (RRMS), helping to reduce the number of relapses the individual experiences, there is no effective treatment which alters the rate or severity of progression for SPMS. As a result, many people experience the onset of SPMS at a time when disease modifying treatment stops and when there is much less available which holds any prospect of altering the course of the condition. As a consequence, some people worry that there may be little on offer.

“My neurologist said I was now secondary progressive.  He also said that there is nothing he could give me.  Is there really nothing that can help me?”

The objectives for the project were:

  1. To explore the experiences of people with MS, carers and clinicians around the transition to SPMS.
  2. To identify the support needs of people with MS and carers at this stage.  
  3. To identify the educational needs of clinicians working with people with MS at this stage. 

What was found

Twenty people with MS, 13 carers and 11 health professionals participated in semi-structured interviews.  Follow-up focus groups were attended by eight people with MS and two carers. The qualitative interview and focus group data were analysed thematically.  The data identifying potential professional learning needs were used to inform the content and format of proposed future educational interventions.

Several themes emerged from the research, each reflecting the varied needs and experiences of those diagnosed with SPMS.

Themes from participants with MS and their carers:

  • Realisationhow people came to know they had SPMS
    Some realised gradually their disease was progressing, and there were mixed reactions to this. Several were frustrated that their neurologist did not initiate this conversation, while others were happy to come to the realisation themselves. For others, the realisation was sudden and shocking. There was a wide call for greater transparency at this early stage.
  • Reactionhow people reacted to this news
    The meaning associated with the realisation prompted numerous reactions. For some, SPMS was simply a label, and did not change their day-to-day reality of living with MS. Others were very troubled by the lack of disease modifying treatment for this new stage of MS. Several reported panic at the news, and later grief and loss. Some said that the news gave them greater motivation to manage and control their disease.
  • Realityphysical, psychological and social consequences of having SPMS
    People with MS and carers described multiple physical and cognitive symptoms of MS.  Mobility problems were most frequently discussed, and declining mobility had a major impact on daily life, restricting independence. 
  • Recognising future challengesliving with uncertainty and maintaining hopes for the future
    Different strategies were used by people with MS and carers in dealing with the uncertainty of the future.  Some chose not to think about it, avoiding difficult topics until it became necessary. Some participants were able to reflect on the ways in which they had successfully overcome challenges in the past, gaining confidence in their ability to do the same in the future. Deterioration was the main concern for people with MS, whereas carers worried both about how the person with MS would cope with a decline in function and how they would cope themselves.
  • Supporthow people with MS and their carers acted to support themselves and utilised a support network
    Feeling supported involved having a supportive network and feeling able to do things to support oneself.  Those participants who felt there were problems with their support network or identified barriers to supporting themselves felt less positive.
     

Themes from Health professionals:

The transition:

  • Recognition – recognising the transition takes time and often requires repeated visits to assess for progression, making continuity of care important in helping professionals feel confident about the diagnosis.
  • Communication – professionals recognised the potential benefits of having an open discussion which would allow the person with MS to plan for their own future.
  • Impact – the impact of the confirmation of SPMS (and the wide variety of potential negative reactions to this) weighed heavily on the minds of practitioners, making the discussion more difficult.  

Providing support:

  • Personal challenges – most professionals were involved to some extent in symptom management, with some symptoms recognised as more difficult to manage than others.  In general, invisible symptoms such as changes in mood, memory and personality were seen as more challenging as professionals lacked the necessary skills and resources to manage these effectively.
  • Working with others – multidisciplinary working was important to all professionals interviewed.  The valuable expertise that colleagues could provide was recognised as highly beneficial.
  • Service constraints – a lack of time was the major service constraint reported by professionals.  Having the time to develop a relationship with the people with MS on their caseloads improved the support professionals felt they could offer, but their workload acted as a barrier.
  • Supporting carers – professionals recognised the important role carers played and the difficulties they faced. They were keen to provide support although recognised that this was often not done well. 
  • Professional educational – professionals recognised it could be difficult to prioritise learning in the day-to-day work environment due to competing activities that took priority.  Having protected time out of the clinical environment to focus on learning was seen as helpful for this reason. Due to time pressures generalists felt it would be unfair to spend a disproportionate amount of time learning about MS when it represented only a small amount of their workload.  Specialists also recognised that sometimes educational interventions did not always meet personal learning needs. 

Importance for people with MS and health professionals

The transition to SPMS is often a very difficult time for people with MS and their carers because they need to come to terms with what may feel like a ‘re-diagnosis’ of MS, the changes in their care and the uncertainty of the future. It is also challenging for health professionals to sufficiently support people with MS at this time, due to the clinical uncertainty of this period and the complicated nature of communicating changing symptoms. This study suggests that support could be developed to improve future care. These suggestions may be summarised as three practice points. Firstly, it is important for health professionals to consider when they raise the possibility of transition and whether they provide sufficient information for people with MS so they may understand this possibility. Secondly, professionals should aim to tailor appointments according to patients’ preferences and provide personalised information for them. Finally, professionals should consider the indirect and inadvertent messages that come with changing care and access to services. Reasons for changes in care/treatment should be made clear, with a positive focus on what is available. Following these suggestions, people with MS and their carers will find life with MS easier because they will feel supported by services and have the relevant, tailored information available to make decisions about the management of their SPMS.

 

The research study has been published:
Davies F, Edwards A, Brain K, et al.
“You are just left to get on with it”: qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis.
BMJ Open 2015;5(7):e007674.

Full article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3371413/

More completed projects

Defining the value of allied health professionals with expertise in multiple sclerosis

Katy Dix and Howard Green

People with MS need support to manage their condition and allied health professionals (AHPs) are an integral part of a comprehensive, multidisciplinary MS service.

Physiotherapists, occupational therapists (OTs), speech and language therapists and dieticians all make a vital contribution to MS care. Some AHPs, however, through training and clinical experience, build up a greater depth of knowledge and skill in MS and offer a greater level of expertise in their service. This research explored the difference that these AHPs with particular expertise in MS can make. They were asked how their expertise generated greater value for people with MS. They reported that they:

  • have the depth of clinical knowledge to be confident in their assessment and treatment and so are credible to people with MS
  • know enough about the condition to anticipate what care will be needed, helping people through periods of change
  • can get to know a patient well and so can determine the right treatment throughout the course of the condition, despite the unpredictable nature of MS keep up with, or participate in, research and education of colleagues
  • bring a different conceptual approach to treating MS, which generates better outcomes for people
  • believe they can generate significant financial benefits to the system, even if these cannot easily be quantified.

The report makes important, practical recommendations for commissioners designing and allocating resources for MS services, for AHPs working on the front line in a changing and challenging environment and to the national organisations with an interest in protecting and developing services for people with MS.

Published report

Dix and Green

Defining the value of allied health professionals with expertise in multiple sclerosis

Letchworth: MS Trust; 2013.

The full report can be downloaded as a PDF from the MS Trust web site.

Defining the value of MS specialist nurses

Geraldine Mynors and Sarah Perman, Mynors Suppiah Ltd
Martin Morse, Morse Analytics

Aims

The research aimed to assess the evidence for the value of MS specialist nurses. In particular:

  • The history of the development of the MS role and the range of work undertaken today
  • The number and location of MS nurses and the caseloads they manage
  • The arguments which drive the employment decision, as well as other enablers and the barriers, where these exist
  • How incentives and guidelines operating in the NHS influence the decision
  • Similarities and differences in the roles and economics of MS nurses employed in acute trusts and in the community, and how different funding models affect the decision to employ them
  • What evidence is already available or what new data may need to be gathered to complete the case for the value of the MS Nurse role

What was found

MS specialist nurse workforce today

  • There are 235 whole time equivalent MS specialist posts in the UK today
  • MS nurses have a strong role in clinical decision making, particularly symptom management and medication management
  • There is a wide variation in nurses' service models and levels of clinical autonomy
  • Caseloads vary from 210 to 650, with an average of about 450
  • Three quarters of MS nurses are employed by acute trusts; the remainder by community providers
  • Funding models influence the way that MS nurses work and the ease with which they can fulfil their role 
     

The economic value of MS nurses

  • There is a general lack of economic data particularly at the local level
  • MS nurse posts can achieve cost savings for GPs, and Primary Care Trusts/Clinical Commissioning Groups
  • Tools already exist to assist the collection and analysis of economic data on MS nursing
  • MS nurses need to evaluate the performance and quality of their services 
     

Measuring nurse performance

  • It is important for MS nurses to log activity, caseload and unmet need
  • MS nurses should set standards for their work to demonstrate how they improve care for people with MS
  • There are no national quality standards for MS nursing although some services have set up local standards
  • Clinical audit against standards is part of a cycle of quality improvement and should lead to change
  • Measuring the patient experience of using the MS nursing service is essential to gather evidence of the value of the service and to identify areas where improvement can be made
  • The commissioning landscape is changing so there will need to be discussions around the future level of service provided 
     

Importance for People with MS and Health Professionals

The MS nurse role is highly valued by people with MS. It covers a wide range of activities, the most commonly cited being the provision of specialist advice, co-ordination of care, onward referral, and psychosocial support.

The reforms to the NHS, rising financial pressures and the need to deliver significant savings with no compromise in quality means that MS services need to make themselves visible to a new group of clinical commissioners and show the difference they make. This study suggests ways in which this can be done.

Published report

Mynors G et al.
Defining the value of MS Specialist Nurses
Letchworth: MS Trust; 2012.

Download the full report Defining the value of MS Specialist Nurses (PDF 849Kb)

Surveys of MS services

Commissioned by the MS Trust and the Royal College of Physicians

2006 survey

In 2003, NICE (National Institute for Health and Clinical Excellence) issued guidelines for MS service delivery. Its six key recommendations and one quality marker were:

  • The availability of specialised services
  • Rapid diagnosis of suspected MS
  • Seamless delivery of services to people with MS
  • Services being responsive to the needs of people with MS
  • Sensitive but thorough needs-assessment
  • Self-referral after discharge
  • Appropriate management of pressure ulcers

In 2006, a survey of representative areas of England showed that delivery of services for people with MS was poor, often not complying with the NICE guidelines. In addition, there seemed little intention to improve services and, in any case, arrangements for checking the quality of services were often inadequate making it difficult to monitor or make improvements.

Overall, it seemed that MS services were a low priority despite the publication of the NICE guidelines. It showed that setting standards was not enough; there needed to be accountability and quality assurance. Patients had a right to expect improvements and these had not been delivered in most areas.

2008 survey

The survey asked people with MS, Hospital Trusts, Primary Care Trusts and the Strategic Health Authorities a number of questions related to the six key recommendations and one quality marker of the NICE (National Institute for Health and Clinical Excellence) guidelines issued in 2003. The results were compared with a similar National Survey conducted in 2006.

Although access to specialist neurological services had improved since 2006, there were still long delays from GP referral to diagnosis, with 50% of all patients waiting more than 20 weeks. The survey showed that access to neurological rehabilitation services remained unacceptable - only 36% of people with MS had access to such services. The survey also reported that 6% of people surveyed had developed a skin pressure ulcer during the previous 12 months. Occurrence of pressure sores had been identified by NICE as a "quality marker" for MS services.

Patient involvement, both in the planning of their own care and in overall service provision and development, was very poor as was the integration of care between health and social services.

For people with MS, delays in diagnosis and inadequate symptom management causes distress, and may worsen disability. There are also costs to the NHS, for example, a grade 4 pressure ulcer costs the NHS an estimated £10,551 [in 2008]. Overall, the survey showed that there was much scope for progress. Specific recommendations for improvements were made particularly regarding responsibilities, commissioning and involving people with MS in all clinical decisions.

2011 survey

The survey asked six sources to provide their perspective on the organisation, resourcing and performance of NHS services for people with MS. Those sources were:

  • people with MS
  • acute NHS hospital trusts
  • community-based services
  • general practice
  • Primary Care Trusts and local health boards
  • Strategic Health Authorities

The audit measured their responses against the standards given in the NICE clinical guideline Management of multiple sclerosis in primary and secondary care (NICE CG8) and the National Service Framework for Long-term Conditions (NSF-LTC). The results were compared with a similar national survey conducted in 2006.

The overarching findings were:

  • There has been no major improvement in many aspects of service provision for people with MS since 2006.
  • None of the six key recommendations made by NICE in 2003 had been implemented widely or fully.
  • The sentinel marker proposed by NICE, the prevalence of skin pressure ulcers, has dropped from 9% to 4% over five years, as reported by people with MS.
  • Seven of the eleven quality requirements of the NSF-LTC, those which are particularly relevant to people with MS, all showed a low level of attainment and would not be achieved by the target date of 2015.
  • One third of trusts had no plans to improve neurological services in the next year.

It was concluded that:

  • All clinical staff need to pay more attention to the many and varied problems faced by people with MS.
  • All NHS organisations need to give more attention to rehabilitation services for people with long-term neurological conditions such as MS.
  • The Department of Health needs to develop and implement a system of commissioning and payment that facilitates integration between all healthcare providers and also between healthcare and Social Services.

 

Cannabis component does not slow disease progression (CUPID)

Professor John Zajicek Peninsula Colleges of Medicine and Dentistry, Derriford, Plymouth, PL6 8BX With 27 collaborating centres around the UK

Aims

CUPID (Cannabinoid Use in Progressive Inflammatory brain Disease) was a long-term research trial which aimed to determine whether tetrahydrocannabinol (THC), one of the active ingredients in cannabis, could slow the increase in disability in people with progressive multiple sclerosis. Earlier studies had suggested that cannabis might play a role in protecting nerves from further deterioration and CUPID aimed to examine this possibility further.

What was found

The CUPID trial followed a double blind, placebo controlled design. Almost 500 participants with primary or secondary progressive MS were enrolled from 27 centres around the UK. Participants ranged in age from 18-65 and had an EDSS (Expanded Disability Status Scale) score of 4.0 to 6.5 inclusive. MS had progressed in all participants in the preceding year. Participants were randomised to receive either THC capsules or placebo for three years, and were carefully followed to see how their MS changed over this period. Two primary outcome measures were used: the EDSS score, a measure of disability assessed by a neurologist, and the MSIS-29 physical impact scale (PDF) where the person with MS reported the impact of MS on their life. Secondary outcome measures included MRI scans, monitoring mobility and spasticity and the MSIS-29 psychological impact scale. The researchers found that treatment with THC did not slow the progression of MS in the group as a whole. There was some evidence that there was a beneficial effect in those participants who were at the lower end of the disability scale when they began the trial. However, as the benefit was only found in a small group of people rather than the whole study population, further studies would be needed to test the robustness of this finding. The CUPID trial found that MS progressed more slowly than was predicted from previous studies, both in those on THC and those on placebo. This is encouraging news and reflects well on the care now provided by the NHS for people with MS compared with previously. However, it does make it more difficult for researchers to identify any positive effects of treatment when the aim of treatment is to slow progression.

Importance for people with MS and health professionals

Current treatments for MS are either targeted at the immune system in the early stages of the disease or aimed at easing specific symptoms such as pain, fatigue or bladder problems. At present there is no treatment to slow MS when it becomes progressive. This trial aimed to explore whether THC treatment could fill this gap. Although no benefit was seen in the group overall, this study provides important evidence in the ongoing challenge to find effective treatments for progressive MS. The MS Trust funded the cost of MRI scans for this study.

Does receiving FES improve walking?

Geraldine E Mann and Paul N Taylor 
Department of Medical Physics and Biomedical Engineering, Salisbury District Hospital, Salisbury, Wiltshire SP2 8BJ, UK

Aims

In MS, damage to the nerves in the central nervous system prevents or interrupts messages passing to or from the brain via the spinal cord. One of the consequences can be dropped foot which is the inability to lift the foot and toes when swinging the leg forward during walking. This causes the toes to catch or the foot to drag on the ground which can lead to falls and a loss of confidence.

FES (Functional Electrical Stimulation) is the use of electrical pulses to stimulate the nerves of the leg causing the muscles to contract and produce a movement that can help in walking. It causes muscle contraction even when there are conduction problems in the nerves and had been recommended by the Royal College of Physicians for people who had had a stroke.

The study aimed to evaluate its usefulness for people with secondary progressive MS which included unilateral dropped foot. The randomised controlled trial compared groups receiving FES with groups receiving a physiotherapy home exercise programme.

What was found

FES improved walking for people with MS compared with when they received no FES. The group receiving the physiotherapy home exercise programme also showed a significant increase in walking speed and in the distance walked in 3 minutes. The researchers suggested that a combination of FES and physiotherapy might produce an even greater improvement.

FES was more helpful than the exercise programme in improving the activities of every day living and preventing tripping and falls.

Importance of the study for people with MS and health professionals

Maximising mobility, minimising falls and maintaining quality of life are important for people with MS. This study showed that using FES and undertaking an exercise-based exercise programme can improve these aspects.

In 2009, the National Institute of Health and Clinical Excellence (NICE) approved the use of functional electrical stimulation (FES) as a treatment for people with dropped foot.

Published paper

The research study has been published:
(i.) Barrett CL, Mann GE, Taylor PN, Strike P.
A randomized trial to investigate the effects of functional electrical stimulation and therapeutic exercise on walking performance for people with multiple sclerosis. 
Multiple Sclerosis 2009 Apr;15(4):493-504
abstract

(ii.) Esnouf JE, Taylor PN, Mann GE, Barrett CL.
Impact on activities of daily living using a functional electrical stimulation device to improve dropped foot in people with multiple sclerosis, measured by the Canadian Occupational Performance Measure. 
Multiple Sclerosis 2010 Sep;16(9):1141-7
abstract

Better balance and mobility after core stability training

Dr Jenny Freeman , Allied Health Centre, University of Plymouth, PL6 8BH, UK and collaborators, facilitated by the Research Project Team of TiMS (Therapists in MS) group

Aims

Core stability is the ability to control the position and movement of the central portion of the body. Core stability training targets the muscles of the trunk which assist in maintaining good posture and provide the foundation for all arm and leg movements. Core stability training is increasingly being incorporated into rehabilitation programmes and people with MS often choose to attend pilates-based classes in a community setting. It is widely believed that people with MS have reduced core stability and that this may contribute to problems with balance. This study aimed to determine the effect of core stability training on their balance and mobility.

What was found

Each of the eight participants received sixteen face to face sessions with an experienced neurophysiologist over eight weeks; each session lasted 30 minutes. They also undertook an individualised daily 15 minute home exercise programme which consisted of the same exercises. The exercises were selected from a basket of 10 exercises, each with several levels of difficulty. This basket was generated by specialist neurological physiotherapists through a consensus process. The exercises were designed to be appropriate for adults who could walk independently with or without the use of unilateral assistance such as a walking stick or orthotic brace. A range of outcomes were measured. Clear improvements in mobility and balance were seen in five of the eight participants, with significant differences in at least six of the nine measures. Importance of the study for people with MS and health professionals Maintaining mobility and balance are important to people with MS and this study showed the benefits of core stability training. It provides a model for therapists to implement equivalent programmes. This study was supported and facilitated by TiMS (Therapists in MS), with funding from the MS Trust. TiMS brings together allied health professionals who share a special interest in multiple sclerosis. The exercises used by the researchers can be found on the TiMS website. They should only be used with guidance from a qualified therapist in the first instance.

Published paper

Freeman J, Gear M, Pauli A, Cowan P, Finnigan C, Hunter H, Mobberley C, Nock A, Sims R, Thain J.
The effect of core stability training on balance and mobility in ambulant individuals with multiple sclerosis: a multi-centre series of single case studies Multiple Sclerosis
2010 Nov;16(11):1377-84. abstract

Abdominal massage helps constipation

Dr Doreen McClurg, Suzanne Hagan, Dr Stanley Hawkins and Dr Andrea Lowe-Strong
Nursing, Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow G4 0BA, UK

Aims

Constipation is common in MS with prevalence estimates ranging from 30-80%. Symptoms can range from a headache and fatigue to feelings of being bloated, loss of appetite, nausea and vomiting. It has a significant impact on quality of life and can be caused by a number of factors including poor diet, reduced fluid intake, lack of exercise and the effects of medication. However, the disease process itself may lead to a reduction in the time it takes food to move along the bowel or a tightening of the muscles which allow emptying of the bowel.

Abdominal massage had already been used successfully to alleviate the symptoms of constipation especially in palliative care, cancer and hospices. This project aimed to determine the practicality and appropriateness of abdominal massage for people with MS using a small randomised controlled clinical trial.

What was found

30 people with both MS and constipation were recruited then randomly allocated to a massage or a control group. The massage group participants were provided with advice on bowel management and they or their carers were taught how to deliver abdominal massage. They were recommended to perform it daily for four weeks, each session lasting 10-15 minutes. The control group received bowel management advice only. A physiotherapist visited all the participants in their own homes for the duration of the study.

After four weeks, both groups showed improvement in constipation symptoms but the massage group improved significantly more. Participants reported that the massage was relaxing and also gave some empowerment because of self-management.

Importance for people with MS and health professionals

Constipation is a significant problem for many people with MS and is something that can be difficult to discuss with health professionals. Changes in diet and medication, including laxatives, can be helpful. This project showed that abdominal massage was a relatively simple, effective and medication-free way of making going to the toilet easier and more frequent and reducing the feelings of being bloated.

The massage has to be taught by an experienced professional but many of the study participants then undertook the massage themselves although a few asked their wife/husband to do it. Most wanted the independence of doing it themselves but some found it difficult due to weakness and fatigue. There were no harmful side effects. Patients reported that it was very relaxing, especially when carried out by the physiotherapist.

Published paper

The research study has been published:
McClurg D, Hagen S, Hawkins S, Lowe-Strong A.
Abdominal massage for the alleviation of constipation symptoms in people with multiple sclerosis: a randomized controlled feasibility study. 
Multiple Sclerosis 2011; 17(2):223-33
abstract

Information needs of people newly diagnosed with MS

Ros Levenson, Mercy Jeyasingham and Sarah Smith.

Aims

Providing practical, positive and reliable information is at the heart of the MS Trust. This project, which took place in 2012, aimed to examine the information needs of people who are newly diagnosed with MS, their friends and family and the health professionals who support them. This understanding would allow the development of better information resources for people diagnosed with MS in the future and the more effective delivery of information by health professionals, the MS Trust and others.

200 potential participants were recruited through the MS Trust newsletter and web site and also through patient support groups and centres. 49 people with MS who had been diagnosed in the last five years were selected to take part and also ten family members. The aim was to have a range of participants with different types of MS, from different areas of the UK, of varying ages, gender, ethnicity and time since diagnosis.

People were interviewed using a semi-structured format either face to face or by telephone or took part in one of four focus groups in Edinburgh, Sheffield, Bournemouth and west London. Those not selected were invited to send in their views in brief.

What was found
MS specialist nurses and neurologists were the main providers of information to people with MS as they were most closely involved around the time of diagnosis. GPs did not play a significant role for most people. The information provided included publications from patient organisations like the MS Trust.

Seven major themes emerged from the research, each reflecting the varied needs, preferences and experiences of those newly diagnosed.

1. Uncertainty and change

People with long-term conditions are often described as being on an unpredictable journey. The journey may begin even before a definite diagnosis, as the possibility of MS may be suggested or presumed even before a formal diagnosis is given.

The experience of coming to terms with diagnosis varies and some people can feel as though they are newly diagnosed for some time. Also, information needs change over time and not always in a predictable way. People reported fluctuations in their appetite for information, ranging from going on an 'information bender' to avoiding all mention of MS.

Different kinds of information are important at different times. This suggests that information should be offered repeatedly, in stages or layers, to allow someone to choose how much they want at any point.

2. Trust and authenticity

People with MS and their families want to know that the information is reliable. The MS Trust is seen as a trusted source and its material is seen as realistic, while still offering hope. Many newly diagnosed people were overwhelmed by what they termed 'doom and gloom', particularly from unmoderated sources on the internet.

Overall, participants thought that information provision could include alternative approaches as long as the strength, or not, of the evidence was made clear.

3. Personalisation

General information has its place but information tailored towards individual needs is much wanted. There is scope to develop ways of delivering more personalised information including through modern technologies.

It is important that people with cognitive difficulties, including with concentration and memory, have access to appropriate information.

4. Format

Many people see the internet as their natural source for information, but printed information and information given in person by a known and trusted individual remain important.

5. Support

Support may be needed to make use of information, for example, when choosing the most appropriate disease modifying treatment.

For many people, MS is not their only concern. Information about MS needs to fit into the whole picture of their life.

6. Coordination

Healthcare professionals and voluntary organisations have a major role to play in providing information to people who are newly diagnosed and to their families. This can include signposting people towards other sources of information that may be useful.

There was considerable variation in people's experience. Some people received a great deal of information around the time of diagnosis and, occasionally, people received no information at all.

While most areas of information needs were met, at least in part, information about financial benefits and local services was not always provided comprehensively.

7. Empowerment

Many people newly diagnosed with MS are extremely motivated to look after themselves and to take an active role in obtaining information. Information can be empowering and give people a feeling of more control. However, too much information, or information at the wrong time, can be detrimental.

Importance of the study for people with MS and health professionals
Providing appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.

Health professionals, particularly MS specialist nurses and neurologists, play a key role in providing information and in supporting people to make best use of it, especially when making decisions about treatment options.

This research provides information about what is most important to people around the time of diagnosis and will allow the development of better resources by the MS Trust for people newly diagnosed with MS in the future. It also highlights to health professionals, the information preferences and needs of people with MS and should allow them to work more effectively in supporting people at a crucial time in their journey with MS.

Download the full report - 231kb PDF

Acknowledgements

The MS Trust would also like to thank the Tony Bloom Charitable Trust and the generous donors who made this research possible.

How families can cope with advancing MS

Dr Ceri Bowen, Miss Anna MacLehose and Professor Graham Beaumont 
The Institute for Neuropalliative Rehabilitation, Royal Hospital for Neuro-disability, West Hill, Putney, London SW15 3SW

Aims

A diagnosis of MS affects not only the person with MS but also the whole family. The need to support families is a key recommendation from the Department of Health but research had paid little attention to how this could be more effectively delivered.

In depth interviews aimed to investigate the impact on families of a member with severe MS, at the time when that person could no longer be cared for at home and had been transferred to respite or residential care. This can be a period of significant adjustment often following a demanding time meeting the care needs of the individual at home.

Analysis aimed to examine the psychosocial and relationship needs of the individuals with MS as perceived by relatives, as well as the needs of the relatives themselves. Also, whether those needs were being met and how families had adapted to the relative's advancing MS.

The aim was to shed light on successful coping strategies which should then shape better support for people with MS and their families.

What was found

Researchers carried out in depth interviews with 25 relatives with varying viewpoints from 21 families living in different parts of England. All the participants were visiting their relative in a care centre and some were from the same family. The focus was the individual's experience of supporting a family member with MS during a time of change to residential or respite care. These personal accounts were transcribed and analysed.

The results showed that there was a large variation between families and even within families. Learning the health care system, the amount of information offered and acquired and the range of unanswered questions all varied. Understanding the condition was often limited by a "family culture" of not talking about a difficult subject, with the children of parents with MS often gaining the least information.

These factors often left family members unprepared for changes in their loved one's MS, either more or less progression than they expected. Although much information was available on the internet, a key result was that it was essential to have a good and honest discussion of the issues within the family and with professionals.

MS has an impact on family relationships and roles and responsibilities often changed. This was particularly noted when someone moved from being in charge of care to being a visitor to a care home. People usually did whatever seemed necessary to keep things going but the increasing impact on family relationships often went unnoticed until a crisis point was reached. Relatives did not always think of themselves as "carers" so they did not access what carer support there was. The family's situation often created enormous challenges for relationships but also brought some families closer together. Marital relationships, in particular, were vulnerable.

Many difficult emotions were experienced and relatives reported that, at times, they were in great need of support. However, they would have found it difficult to accept help even had they known what was available. MS nurses were seen as a huge support that families wished they had known about earlier. There were mixed views on support groups.

Many people shared profound reflections on the impact of caring for someone with MS and how it had altered aspects of their character and their approach to life.

Importance of the study for people with MS and health professionals

This study should improve service provision for people with MS and their families by pointing the way to more consistent and useful support available from health professionals.

It showed the variation in support offered and accepted by families at present. Also the range of coping mechanisms used by family members as a person with MS made the transition to longer term care.

It highlighted that health professionals need to provide better sign-posting to support and to be proactive. Also, there was a need for greater awareness of the impact of MS and the ongoing challenges faced by families. Too often families fell through the net because they did not shout loudly enough for support or were unaware what was available.

In particular, health professionals needed to shift their emphasis away from the traditional "patient-centred" approach towards a more adaptable "family-centred" one.

The following are ways that health professionals might achieve this:

  • Determine whether there have been previous opportunities for family members to talk in depth with professionals. Gauge their level of understanding of the condition and its prognosis, and answer their questions.
  • Encourage parents to speak directly with their children about the impact of MS, talking through particular concerns and questions, particularly as today's children may be tomorrow's carers.
  • Be aware of any changing circumstances within the family. Are there others within the family needing extra care? Be aware of any births, deaths, or other life events that may occur.
  • Make a plan for the next potential 'care' stage to aid management and help avoid a crisis. If the relative is the main carer, form a plan in case the relative is ill or absent for any reason. Ensure other family members also know who to call should they encounter difficulties. Do they have a good link with an MS nurse? Have they been signposted to other MS or carer support organisations? If further psychological support might be beneficial, can that be dealt with within the team?
  • Emphasise the importance of breaks for individuals and as a family. The possibility of respite care should be discussed with them and they should be encouraged to participate in activities they enjoy as a family. The idea of a holiday or 'time out' sometimes stirs up feelings of guilt. Professionals need to work with families to overcome this and make 'time out' regularly achievable for all family members.
  • Encourage questions and ask for any feedback, reflections, fears, or concerns they have. Try and ascertain what kind of social support network they have around them and direct them to people or organisations that can help.

Published paper

The research study has been published:
Bowen C, Maclehose A, Beaumont JG. 
Advanced multiple sclerosis and the psychosocial impact on families 
Psychology and Health 2010; [Epub ahead of print].
abstract

Better management of fatigue

Dr Doreen McClurg, Suzanne Hagan, Dr Stanley Hawkins and Dr Andrea Lowe-Strong
Nursing, Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow G4 0BA, UKProfessor Peter W Thomas, Dr Sarah Thomas and collaborators
Dorset Research and Development Support Unit, Poole Hospital NHS Trust, Longfleet Road, Poole, Dorset, BH15 2JB, UK and The School of Health and Social Care, Bournemouth University, Bournemouth, Dorset, BH1 3LT UK

Aims

Fatigue is a common and disabling symptom of MS that affects many everyday activities. It is often unseen or misunderstood by others causing difficulties particularly in personal relationships.

Some aspects of fatigue have been attributed directly to the disease process. Some aspects are secondary and attributable to other factors such as sleep disturbance, medication side effects, stressful life events and anxiety. The psychosocial impact of fatigue can be considerable as it may prevent participation in everyday activities, work, leisure and social pursuits.

This research aimed to develop a group-based intervention for the management of fatigue that combined energy effectiveness strategies with cognitive behavioural approaches. The resulting process was to be evaluated and developed with the longer term view of conducting a randomised controlled trial.

What was found

Researchers drew on the views of people with MS and also health professionals. This was combined with experience of a local model of good practice developed for people with CFS.

The programme consisted of six 90 minute weekly sessions delivered by two health professionals with experience in MS such as OTs, nurses and physiotherapists. There was a gradual transition during the programme from a practical to a more psychological orientation. A facilitator manual was developed which included detailed session content and guidance on preparation and delivery. Sessions were delivered using Powerpoint at a hotel meeting room. Participants were given a handbook prepared by the researchers along with existing information booklets on fatigue management. A Supportive Other for each attendee was invited to the first session.

One week before and one month after the programme, participants completed a booklet containing demographic questions and the outcome measures. After each session they completed a post-session evaluation questionnaire to score eight items including content, pace, usefulness and level of difficulty.

The pilot study involved 16 participants who showed a significant increase in self-efficacy (i.e. believing you can do something). Participants rated the sessions favourably and the homework as acceptable and useful. Some suggested that longer sessions would be appropriate so this was implemented to allow a more relaxed pace and more social interaction.

A focus group of participants held after the course identified the following topics and skills as the most useful:

  • Education about MS-related fatigue and structured rest breaks
  • Breathing exercises
  • Pacing – overcoming boom and bust patterns
  • Goal setting and a sense of achievement
  • Challenging negative thoughts
  • Meeting others and facing similar challenges

Participants were positive about the hotel venue rather than a hospital setting, the group size and the opportunity to bring a Supportive Other to the first session. Finding time for the homework could be challenging but it was deemed important and worthwhile. Evidence of lifestyle changes and altered attitudes towards fatigue were noted, particularly a higher perceived ability to control MS-related fatigue.

Importance of the study for people with MS and health professionals

Minimising and managing fatigue is important for people with MS to maintain quality of life including personal relationships. This pilot programme, delivered in a group setting, was effective in reducing perceived fatigue. The format was judged useful and suitable for development into a randomised controlled trial. If successful, it should allow delivery of an effective fatigue management programme for MS that can be widely implemented by health care professionals such as OTs, nurses and physiotherapists.

Published paper

The research study has been published:
Thomas S, Thomas PW, Nock A.
Development and preliminary evaluation of a cognitive behavioural approach to fatigue management in people with multiple sclerosis. 
Patient Educ Couns. 2010 Feb;78(2):240-9.
abstract

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