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Latest figures showing variation in access to neurology services come as no surprise

28th August 2015 by helena.jidborg

Latest figures showing variation in access to neurology services come as no surprise

The publication of the National Neurology Intelligence Network’s first ever figures on neurological outpatient appointments in England brings both good and bad news. The report is the latest to show that access to neurology services and specialists varies significantly across the country.

The finding that there is significant variation in access to services will come as no surprise to people living with MS, or the health professionals who support them. Over the last few years reports from the MS Trust, the Public Accounts Committee, National Audit Office and Neurological Alliance have highlighted significant and unacceptable variation in the quality and availability of support and treatment for neurological conditions.  Neurology services are far too often invisible, and data on even basic issues such as the number of patients in a local area with specific neurological conditions is simply missing.

The National Audit Office recently commented that the lack of progress in rectifying the shortage of useful data is holding back improvements in access to specialist services. The Neurology Intelligence Network’s figures are therefore to be welcomed, even if the picture they paint is not.

Everyone with a diagnosis of MS should receive appropriate, timely, high quality care. In addition to these new figures, our own research has shown that there is a significant shortfall of MS specialist nurses across the UK, and we are aware that there are too few neurologists who specialise in MS. Services are overstretched with one-third of people with MS living in areas where MS nurses have at least double the sustainable caseload. It will require coordinated effort by many in the MS community to ensure there is the capacity in MS services to meet the need now and in the future.

Having access to health professionals with appropriate expertise and experience in managing MS is the very least that every person living with MS should expect, no matter where they live. The MS community needs to find ways to help those commissioning and delivering services to find joint solutions to the barriers that stop people from accessing the right services at the right time.

The MS Trust is committed to building a strong community of practice to understand how MS services can provide greater access to care, make best use of current resources and skills, and measure the quality and equity of access to services for everyone with a diagnosis of MS. Our Generating Evidence in MS Services project (GEMSS) was designed to address this by working with 16 MS teams supporting nearly 13,000 people with MS to help them evaluate their own services and to collect data on activity, caseloads and outcomes. The final report, to be published in November 2015, will add significantly to the evidence-base and delve into some of the underlying issues which result in variation in practice.

Building on the GEMSS project, over the next year, the MS Trust will lead the way in creating a community of practice to tackle the crucial issues of equity, efficiency and effectiveness of services, and to identify service models that could enable greater access to care. We will be announcing the details of this work at our annual conference in November. Watch this space for further details.


Amanda Croft

Policy Officer

Putting MS specialists at the heart of MS care

10th August 2015 by Guest blogger

Geraldine Mynors reports on progress in our campaign to make sure everyone affected by MS can access the best possible specialist case

For the past year 11 teams of MS specialist nurses and therapists have taken part in the MS Trust’s GEMSS (Generating Evidence in MS Services) programme. They have been collecting data about the service they offer people with MS, so that we can make the best possible case for the value of their work. Our task now is to bring the data together into evidence which we hope will influence the shape of NHS services to come.

Unique insights

text from heart of MS care blogBetween them the teams have a caseload of about 13,000 people with MS – that’s over 12 per cent of people with MS in England and Scotland. By working with them we’ve gained unique insight into how MS services work on the ground, what makes services most effective, and the challenges of working in different parts of the NHS. We’ve already used GEMSS data to develop a capacity-planning tool for MS specialist nurses, and to publish our recent report MS specialist nursing in the UK: the case for equitable provision.

Over the past two months, the GEMSS teams have analysed their data and written up local reports. The reports provide evidence about what the MS specialist nurse teams do and the value they add, as well as making local recommendations about how their services can be improved and strengthened. Some of the recommendations they have come up with include:

  • delivering more group education courses on topics like symptom management and fatigue management
  • making contact with people who have been out of contact with services for some time
  • improving the efficiency of their outpatient clinics (improving reminder systems so that slots aren’t wasted, for example).

The MS Trust will be supporting teams in taking forward these recommendations. In some cases, the services have well over the MS Trust recommended maximum sustainable caseload of 358 people with MS per MS specialist nurse, and so they are going to use the data that they have collected to make the case for an increase in the number of MS specialist nurses.
We will be using the GEMSS data to create a national report, to be published in November, which will highlight the findings of the GEMSS programme and present the evidence for the value of MS specialist nurses.

Initial findings

One of the tools we developed with the GEMSS teams is a survey of people with MS. The survey was designed inpart to capture the experience and views of people with MS on the value and impact of their MS specialist nurse service. Around 1,250 people responded to the survey and we’re now analysing the overall data. Some of our initial findings are:

  • MS specialist nurses are the profession that people with MS consult about their MS more than any other.
  • Nearly one-fifth of respondents had seen neither an MS specialist nurse nor a neurologist in the past year, and so will not have received the specialist annual review recommended by NICE.
  • People with MS reported a wide range of positive benefits from having an MS specialist nurse. However, around a quarter of respondents said that their MS specialist nurse hadn’t helped them in the past year. 10 of 11 GEMSS teams have than the MS Trust recommended sustainable caseload, so it’s clear that more nurses are needed in places.

This article is part of the August 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

The new NICE Guidelines for the management of multiple sclerosis in primary and secondary care: will they improve the care of people with MS?

17th March 2015 by Guest blogger


After reading our recent review of the revised NICE Clinical Guideline (CG186) in the January issue of Way Ahead, our periodical for health professionals with an interest in MS, Paul Bull, a retired university academic, former chairman of the Colchester Branch of the MS Society and person with MS, was inspired to share his thoughts.

An opportunity for the MS community to help improve the care of people with MS?

At last, five years late, the National Institute for Health and Care Excellence (NICE) published their revised Guideline for the Management of multiple sclerosis in primary and secondary care1 in October 2014, which in essence presents an outline of the care a person with MS should expect to be able to receive from the UK National Health Service. Unfortunately, this document has not met with unanimous approval. While being praised for recommending the application of multidisciplinary teams, a named single point of contact and annual reviews by an MS expert for the treatment of MS, they have been criticised for undervaluing the role of MS specialist nurses, not bringing together all elements of MS care into a single document of best practice and for not recommending the drugs Fampridine and Sativex for the relief of immobility and spasticity respectively2. But, will these new guidelines be of any use? Will they help lead to improvement in the care of people with MS in the UK, such that they reach the acceptable standards set out in the NICE document? There are certainly some powerful reasons to be pessimistic as I will make clear. However, this Guideline also presents the MS community with an opportunity that should not be missed, an opportunity to mobilise into helping to improve the care of the people with MS.

Under resourced, lack of compliance and not legally binding

There are three main reasons to be pessimistic. First, in the UK neurology is a relatively under-resourced specialism with less than a third of the number of neurologists per head of population compared to the European average3 and at a time when demand for its services is increasing due to an ageing population, potential budgetary cutbacks and the continuing impact of a major internal reorganisation of the health service. Under such conditions, is it possible that services for MS will be able to compete successfully with calls for support from much larger disease groups, such as Alzheimer’s disease with seven times as many cases, and stroke and epilepsy each with almost three times as many people affected4.

Second, the experience of compliance with previous standards of care has been disappointing. For example, an audit of the 2003 Guideline5 by the Royal College of Physicians and the MS Trust6 via a self-selected survey on the MS Trust website indicated that for a large number of people with MS in the UK, the majority of the NICE Guideline for their care had not been implemented five years after its publication. Similar desultory results were discovered around the implementation of the 11 Quality Requirements of the National Service Framework (NSF) for Long-term Conditions7 published by the Department of Health that were supposed to put the individual at the heart of care. In a review of the progress of the implementation of the NSF, Thomas et al8 found that in the Primary Care Trusts investigated, not one had fully met a single NSF quality requirement. Indeed, in a recent review of services for people with neurological conditions9, the National Audit Office highlighted that no major improvements had taken place in their care since 2006. With such a pedigree of failure, what hope is there for this new Guideline in the improvement of care?

Third, it must be remembered that this guidance from NICE is not legally binding. Health professionals are expected to take the Guideline fully into account when exercising their clinical judgement, and it is the responsibility of local commissioners to implement the guidance. However, there are no sanctions if they do not. Furthermore, it must be very easy for the Guideline to be overlooked, given all the other competing demands on health professionals’ time and the many competing demands for health care funding. As a result, I suspect this NICE Guideline will not automatically come into effect through some magical administrative osmosis. If they are deemed worthwhile they must from now on be championed by the MS community. My hope is that this will be carried out at the strategic level of the four national health authorities by their respective MS organisations. But, what about at the local level, say at the scale of the MS Society Branch where important resource-allocation decisions are also being made that directly affect the care people with MS receive? Branch committee members are probably ideally placed to know what is going on in their ‘patch’. However, for them to get involved in lobbying for improvements in the health care of the people with MS in their area they need help in at least two important areas. First, they need a simple tool to be developed that will indicate the degree of local compliance with the new NICE guidance; a device that will provide objective evidence on the standard of care available to people with MS. This could, for example, be in the form of a list of tick-box questions. Second, they need advice on how best to lobby for their improvement in the new NHS. It is in these last two areas of support that I believe the MS charity sector has been weak in the past. Let it not happen again, so we stand a chance of making things better for people with MS.

Paul Bull, February 2015.

1. National Institute for Health and Care Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE clinical guideline 186. London: NICE; 2014.
2. MS Trust. Management of MS in primary and secondary care – NICE Clinical Guideline 186: an analysis of how it measures up. Way Ahead 2015; 19(1):11-15.
3. Lancet Neurology Editorial. UK neurological care: time to confront the crisis. Lancet Neurology 2011; 10(8): 671.
4. Neurological Alliance. Neuro Numbers: a brief overview of the numbers of people in the UK with a neurological condition. London: Neurological Alliance; 2003.
5. National Institute for Health and Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE clinical guideline 8. London: NICE; 2003.
6. Royal College of Physicians, MS Trust. National audit of services for people with MS 2008: summary report. London RCP; 2008.
7. Department of Health. The National Service Framework for Long-term Conditions. London: DH; 2005.
8. Thomas S, Davies A, Peel C. A mid-term review of the NSF for long-term neurological conditions. British Journal of Neuroscience Nursing 2010; 6(8): 366-70.
9. National Audit Office. Department of Health: services for people with neurological conditions. London: The Stationary Office; 2011.

Do your medicines move with you when you go into or out of hospital?

13th March 2015 by Shan Teo

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new guidance from NICE

NICE (National Institute for Health and Care Excellence) has published new guidance* about what hospitals and other health professionals should be doing to ensure that medicines are used to best effect – what the jargon calls ‘Medicines Optimisation’. This type of NICE Guidance is seeking to standardise practice so that all the information goes with an individual every time. It’s not the most exciting topic in the world but it can really matter, as anyone can testify who has had a bad reaction, or whose medicines interact, or who has been discharged from hospital without all their medicines.

NICE’s prime concern is that medicines and all the information about them go with the individual when they are admitted to or discharged from hospital, especially if someone is discharged to a care home rather than their own home. In this instance, the new guidance states the obvious, such as that information about medicines should contain information about the patient and their GP, a full list of medicines, dosages, times taken, when medications need to be reviewed.

But there are some more positive points for people with MS. One recommendation covers the Medications Review, which is a ‘how-to’ guide. Medications reviews look at all the prescribed, over the counter and off the shelf medicines (including supplements) someone might be taking, to ensure that medicines are not counteracting each other. Some off the shelf medicines and supplements are known either to counteract some prescription medicines or to reduce their effectiveness. Another important element of a medications review is to identify whether any of these drugs or some combination is likely to provoke a bad reaction. And then it’s always worth checking whether someone actually needs all these medications? How many people want to take more than is strictly accurate.

The other key recommendation is a medicines self-management plan for everyone with a long term condition. These are structured, documented plans which will include what medicines you might be taking, how, and when; also possible allergies to any drugs and who to contact if things go wrong. This can only be a good thing for people with MS.

*NICE guidance only applies in England.

NHS England and continence – at last, the potential for some real improvements…

28th January 2015 by Amanda Croft

In a recent blog, Director for Patients with Long-term Conditions at NHS England, launched a new initiative to improve bladder and bowel care for the millions of people across the UK who experience bladder and bowel problems.
Without any fanfare, NHS England has embarked on a programme called ‘Excellence in continence care,’ to ensure that commissioners invest in continence services. Being NHS England, they want to do this for financial reasons as much as improving people’s health, but still, we can hope for a positive outcome. Dr McShane lists four benefits of improving continence care, most of which benefit the NHS system rather than people. According to Dr McShane, improving continence care will lead to:

  • contributing to independent living and improved quality of life
  • a reduction in admissions to residential or nursing care homes
  • fewer emergency hospital admissions with urinary tract infections, pressure ulcers and catheter related infections
  • reducing prolonged use of incontinence products (eg catheters, pads etc) through interventions such as physiotherapy and medication

Why does this matter? Well, people with MS tell us that bladder and bowel problems are some of the most embarrassing symptoms anyone can develop. A fear of accidents can stop people from going out, from going to work, from trying new things, even from seeing friends and family because life is dominated by being able to get to a nearby toilet.
Unfortunately, in MS bladder problems are some of the most common symptoms, and can include:

  • Urgency – needing to go now with little or no warning
  • Frequency – needing the toilet very often
  • Hesitancy – difficulty in emptying the bladder
  • Retention – a feeling of incomplete bladder emptying

Bowel problems in MS are almost as common. These are thought to affect around half of everyone with MS at some stage, and can be even more difficult to talk about than bladder problems. Common bowel problems in MS include:

  • constipation and problems emptying the bowel;
  • faecal incontinence or lack of control over bowel opening

The good news is that if these problems affect you, the MS Trust may be able to help. Our self-management guides, Managing your bladder and Managing your bowels outline common difficulties caused by these symptoms in MS and what to do about them. Also, one of our most popular resources for nurses and other health professionals is the Practical Guide to bladder and bowel in MS, which takes health professionals through the nuts and bolts of managing common bladder and bowel problems in MS.

All of which is great so far as it goes, but it is even better to see NHS England finally take this issue seriously. Let’s hope that NHS England’s campaign for Excellence in Continence Care leads to lasting improvements in provision of continence services in all localities, so that everyone with MS who needs this help gets it. In the meantime, if any of these symptoms affect you, talk to your MS nurse in the first instance or ask your GP for a referral to your local continence service – in some areas, you can contact these services directly.

MS Trust supports Disability Benefits Consortium on Fitness to Work assessments

3rd December 2014 by Shan Teo

We know that the government’s changes to work-related benefits are hitting people with MS hard. As you may know, as a small charity the MS Trust restricts the government policy work we do specifically to health issues.

We believe that everyone with MS is entitled to a full life, even if we don’t have the capacity to work in all areas. Around work-related benefits, we support the work of the Disability Benefits Consortium, who have far more expertise than we do. They issued a press release on 28 November around Fitness to Work assessments, which included the following statement:

“The fit to work test is failing disabled people, with devastating consequences. Wrong decisions can mean people are left with little or no support at all, in some cases struggling to pay for their homes and basic essentials like food and heating. Significant changes need to be made urgently to stop disabled people suffering at the hands of the process as it currently stands. The test has to be more than a box-ticking approach and properly recognise the barriers many disabled people face in getting and staying in work”

As its objectives, the Disability Benefit Consortium states that it is committed to achieving a benefit system that:

  • Is built on the rights of disabled people;
  • Is informed by the needs and experiences of all disabled people;
  • Is fair in its design and administration;
  • Is transparent and accountable;
  • Supports disabled people to meet the extra costs associated with disability;
  • Reflects the reality of the challenges faced by disabled people seeking work;
  • Recognises the individual needs of all disabled people (regardless of factors such as impairment and age);
  • Contributes towards tackling disability poverty and interacts with other government measures to achieve this;
  • Tackles misunderstanding about disability and the support disabled people may need from the benefit system.

Find out more:

Potential change for the NHS in Wales

26th November 2014 by Shan Teo

New care standards have been unveiled by the Welsh Government, to improve standards of care throughout the NHS. They’ve gained more urgency after care scandals were reported at the Princess of Wales hospital in Bridgend and Glan Clywd hospital in Rhyl.

The new, improved standards of care are collated into a Health Standards Framework, which is based around 7 quality themes. These are:

  • staying healthy
  • safe care – including a requirement that people in Wales protect themselves from known harm;
  • effective care
  • dignified care
  • timely care, which includes a commitment that people in Wales are actively involved in decisions about their care
  • individual care
  • staff and resources – oddly enough this is not a commitment to staffing levels, but that people in Wales can find information about how their NHS is resourced and make careful use of them

In the same week, a new four year plan that will move more healthcare into the community, in theory provide services closer to home, and start to integrate health and social care services has also been outlined. Our plan for a primary care service for Wales up to March 2018 sets out the following commitments. It’s difficult to see how some of these will be met within the four year timeframe:

  • healthcare will be planned and delivered locally – assessment, treatment and ongoing care will be available in or as close to people’s homes as possible with rapid and more local access to more specialist clinical advice;
  • access to services will be improved – more use of modern technology and better information, advice and assistance to support effective self care and care from a wide range of the right professionals, including pharmacists and nurses, on the same day, either face-to-face, on the phone, by e-mail, instant/video messaging;
  • quality of services will be improved – to support improved health and self care, there will be more co-production of care, more integrated teams of health and social care professionals working around the person, who are trained to provide a wider range of more personalised care, acting on feedback on patient experience and peer review;
  • equitable access – tackling the effects of poverty by planning and delivering care which is proportionate to need to reduce the gap in health outcomes – such as low birth weight and life expectancy – between the most and least deprived communities; increasing access to care in the Welsh language.

The Welsh Government believes that this ambitious policy for primary care will help to improve health within Wales while continuing to reduce the cost of the NHS.

Have your say about Northern Ireland’s ehealth and care strategy

14th November 2014 by Nicola Pates

If you live in Northern Ireland, the Health & Social Care Board (HSC) is asking for views about its new strategy to improve the use of electronic and digital information within the health and social care system in the province.

The strategy has six objectives:

  • Supporting people
  • Sharing information
  • Using information and analytics
  • Supporting change
  • Fostering innovation
  • Maintaining and improving what we have

Many of the outcomes are tied to concrete objectives, such as giving individuals better access to their own records, and reducing the amount of time health professionals spend entering information into notes. Some of the questions that the HSC would like responses to are as follows:

  • how far should the HSC be using eHealth technologies to help people look after their own health and wellbeing? This includes things like websites, mobile apps, online support tools, social media (eg Facebook and Twitter), and personal text or email messages
  • how far do you agree that options such as booking appointments, repeat prescriptions, email questions to doctors, texting care professionals and similar services would be useful?
  • if a health or care professional uses a computer to support their decision making whilst in a consultation, would that help, hinder or have no effect on the conversation?
  • how useful would it be to have access to your eHealth records (ie your electronically held patient records?)

They also ask about your opinion on sharing health information among health professionals, about security of health information and about whether expanding eHealth in Northern Ireland might foster economic development, for instance by encouraging new software companies to develop.

The MS Trust won’t be responding to this consultation but if you live in Northern Ireland and feel strongly about this, please do!  There is a paper list of the questions to the consultation at the back of the leaflet, or you can respond to the consultation electronically.

The consultation closes Friday 9 January 2015 at 5pm.

What did we want to see in the NICE guideline?

8th November 2014 by Shan Teo

Amy Bowen, the MS Trust’s Director of Service Development, explains what’s missing from the NICE Clinical Guideline
Amy Bowen, Director of Service Development, MS Trust

Why does the MS Trust think the guideline falls short?

We think the guideline doesn’t deliver for people with MS because it fails to bring together its recommendations into a comprehensive description of best practice in MS care. We would also like to see further recognition of the role of specialist nurses in delivering recommendations, such as the annual review and as the single point of contact for the MS patient.

What do you think about the failure to recommend Sativex and fampridine?

Sativex is a licensed medicine for treating people with moderate to severe spasticity due to their MS. We think that people with MS should have access to treatments that are safe and effective. However, we think these treatments should be part of a wider spasticity management plan, involving physiotherapists and occupational therapists. The guideline doesn’t acknowledge the importance of these roles and this could mean that spasticity services are developed without the most basic elements.

This is just one example of how the guideline fails to deliver an overview of best practice in MS care.

We are also disappointed that fampridine has not been considered by NICE because, in some cases, it can be an effective treatment for MS-related walking problems.

However, as with the case of Sativex, this is just one part of the new guideline and we believe there are wider issues which NICE needs to take into account and where the guideline fall short.

What happens next?

The new guideline is an improvement on the previous draft, particularly the recommendations on clear and practical information, the role of the multidisciplinary team and the recommendations that people with MS should have a single point of contact and annual review.

However, we believe there are still significant gaps and omissions which need to be addressed. The MS Trust wants to work constructively with NICE and other organisations to address these issues.

A blueprint for integrating health and social care in England?

26th September 2014 by Nicola Pates

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new report recommending more joined up working between health and social care in England, and considers what it might mean for people with MS

A new settlement for health and social care: final report is the unassuming title of a King’s Fund document that is trying to identify a solution to the gap between health care and social care that currently exists within England. Known as the Barker Commission – because of its chair, Dame Kate Barker CBE – this document has no legal force.  However, King’s Fund reports can be very influential so this report’s recommendations may have an effect on the different political parties’ plans for health and social care in the run up to the next general election, due May 2015.

The report makes 12 recommendations, many of which are concerned with funding any potential new system:

  1. A new settlement is needed for health and social care in England that breaks down the historic divide between the two systems and provides a much simpler path through the current maze of health and social care
  2. England needs to move to a single, ring-fenced budget for health and social care, with a single commissioner
  3. We recommend that work be undertaken to explore whether and/or how the health and wellbeing boards could evolve into the single commissioner for our new settlement.
  4. A much simpler path through the whole system of health and social care should be designed to reflect changing levels of need
  5. There should be more equal support for equal need. In the long run that means making much more social care free at the point of use
  6. We do not recommend any changes to NHS charges (except for rationalising accommodation costs outside hospital, and reducing the prescription charge)
  7. The government should plan on the assumption that public spending on health and social care will reach between 11 per cent and 12 per cent of GDP by 2025. This will involve some significant tax increases.
  8. The older generation, and those approaching state pension age, will be among the biggest beneficiaries of our new settlement, and we recommend, on the grounds of inter-generational fairness and equity, that they should make a significant contribution to the additional costs involved in our recommendations (phasing out free TV licences and winter fuel payments, NI to continue at a reduced rate if you work past state pension age)
  9. Our recommendations for much more social care to be free at the point of use will have to be phased in. As that happens we recommend an additional 1 percentage point employees’ National Insurance contribution for those aged over 40 as a contribution towards the more generous settlement from which they and their parents will benefit
  10. We recommend an increase to 3 per cent in the additional rate of National Insurance for those above the upper earnings limit, again timed to match the extensions of free social care
  11. With a view to raising additional revenue, we recommend a comprehensive review of wealth taxation to include possible reforms to inheritance tax, a wealth transfer tax, changes to capital gains and property taxation
  12. Given the changing evidence base as the population ages and medical advances continue, we recommend that the government adopt the recommendation of the Wanless review of 2002 and institute a regular review of the health and social care needs of the country and the spending required to meet them

It is difficult to see any political party swallowing all the funding recommendations made by the Commission.  There have also been criticisms that the Commission did not take into account the existing funding crisis within the NHS, which may adversely affect its figures.  On the whole, though, any attempt to look at joining up the whole system, and to look at funding social care well enough that it can be free at the point of use for many people, is welcome.