Skip to main content Skip to navigation

MS Trust Blog Home

Archive for the ‘Action for MS’ Category

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

28th January 2015 by alice.hamilton

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.

Working towards care of the whole person: investing in mental health

24th September 2014 by Shan Teo

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new report on public mental health services and considers what It might mean for people with MS

‘Mental health’ always sounds remarkably scary. In fact, it’s a misleading umbrella term that covers a whole range of things from needing psychological support in coming to terms with an event or diagnosis, through anxiety and depression, right through to very severe conditions.
Mental ill-health can form a part of people’s experience of MS, and particularly common in MS are are anxiety and depression. MS is unusual in that these symptoms may be a reaction to the diagnosis of MS, but they may also be symptoms caused by the condition. But did you know – I didn’t – that these symptoms occur to a greater extent in people with any long-term condition, not just MS.

Knowing this may make you feel better, or worse: like so many MS symptoms, treating anxiety and depression is possible, but accessing suitable treatment may be difficult. And it seems that difficulties in accessing suitable treatment are not confined to MS, a subject that the Chief Medical Officer of the NHS in England has this year chosen to focus on. Her evaluative report on the current state of mental health services in England, Public mental health priorities: investing in the evidence, provides a comprehensive overview of the current state of mental health services, and mostly comments on the woeful inadequacies of the system in sorting these out at the moment.

The report makes 14 recommendations to improve services, but buried within the 340 pages of text are some important observations that don’t make it to the recommendations. Some that seem more pertinent to many people with MS include:

  • mental health services are exempt from the 18-week maximum waiting time for services stipulated in the NHS Constitution This results in very long waits for services such as counselling
  • people with long-term health conditions are two to three times more likely to experience mental health problems than the general population, yet the majority of cases of depression among people with physical illnesses go untreated
  • people with ‘common mental disorders’ (eg anxiety and depression) are more likely to live in low-income households, to be single parents, not to be in work, and to experience fuel poverty. [We know that all of these issues affect some people with MS.]
  • it’s not just the person with the condition: full or part-time carers are more prone to common mental disorders, partly because of the difficult emotions and broken nights that may arise from the caring role, and partly because of the results of the caring role, such as difficulties with finances, work, housing, and possibilities to get out and about
  • mental health care accounts for only 13% of NHS spending while being responsible for 28% of all morbidity in England. [If you add to this the woeful underspend in England on neurological services, the upshot is likely to be very poor support for people with MS]
  • mental ill-health is both a cause of unemployment (ie may cause you to lose your job) and a result of it (ie people who are not in work are more likely to have poor mental health). [We know work is a huge issue for people with MS.]
  • there are structural problems in improving provision of psychological support in general hospitals, even though everyone recognises that better provision of these services often results in shorter hospital stays and in reduced hospital admissions

All in all, the CMO’s collection of evidence paints a gloomy picture. To address some of these issues, the report makes 14 recommendations from the evidence collected. Possibly the two most relevant to MS are Recommendation 6, which is that whether an individual is employed needs to be a routine part of patient records, as employment is central to mental health; and recommendation 14, recommends developing waiting times standards for access across mental health services.

We know, from what you tell us, that getting help such as counselling is next to impossible. We can only hope that the Chief Medical Officer’s report may spur NHS England to take this issue on and start to tackle some of the historical issues that create such difficulties in services.

The financial costs of MS

16th September 2014 by Nicola Pates

Do you know how much more having a diagnosis of MS has cost you financially?

I don’t, but at a guess I would say that your car insurance and travel insurance have gone up and that it’s difficult and expensive to get life insurance and a mortgage.  Not to mention the hours spent on the telephone and with the forms, and getting medical reports to submit with the forms if you need them.

Then there are all the other day-to-day costs of MS, which can certainly mount up.  These are things like prescription charges, hospital and GP surgery car parking charges, costs of specialised equipment if you need it.  Specialised equipment need not be exotic: I’m thinking of things like smartphone apps to help keep track of your MS, or fans to help you keep cool.  Would you need these if you didn’t have MS?  And then there are the financial deals you miss out on – for instance, does the need to plan around your MS mean that you can’t take advantage of cheap deals on things like travel, theatre tickets or restaurants, because they are only available at short notice or at strange hours?

We know that all of these things have an impact on your financial situation. Unfortunately, as a small charity, we don’t have the resources to campaign about the financial impact of MS but SCOPE, the disability charity, does.  In July they launched their Extra Costs commission which is running for a year and looking at the extra financial costs that people with a long term condition or disability face.

SCOPE are specifically requesting individual accounts of your experiences of extra costs that are incurred because of your MS, and of how these costs affect you and your financial situation.  Have these costs led to financial hardship?  Does it make it harder to make ends meet?   Please don’t let the fact that SCOPE label this as ‘disability’ put you off – this is an opportunity for people with MS to explain just how financially expensive having MS is, along with being emotionally, physically and mentally hard.

I cannot stress how important it is that all aspects of the costs involved in MS are exposed within this report, and that can only happen if you submit your personal experiences. SCOPE needs to hear about the extra costs you face, but also about their effect on your whole financial situation. There is an online form here which is really simple to use and which allows you to say as much or as little as you like, in your own words so that you can focus on what matters most to you.

The closing date for submissions is Friday 26th September 2014. 

Alice, Policy Officer

Give official feedback about how Personal Independence Payment is working

3rd July 2014 by Shan Teo

The Department for Work and Pensions is seeking feedback from real people about your experience of claiming Personal Independence Payment (PIP), in a consultation process that lasts until 12 noon on 5 September 2014.

They have commissioned the first independent review of how PIP is working (or not), and are specifically asking for feedback about personal experiences of going through the claims process. This Review is a statutory requirement of the Welfare Reform Act 2012, but the terms of reference, available here are reasonable.

The MS Trust is not responding to this consultation as we have no experience of going through the process. But many of you do, and this is your chance to let the DWP know exactly how dismal your experience of claiming PIP has been.
As is the way with consultations, there are specific questions that they are looking for you to answer. You can write a letter, or email these responses, or there is an online form – all the options are set out here but you may need to scroll down the page.

Many of the questions allow the independent reviewer an insight into your experience of the process, since these include questions such as:

“Please describe:

  • a) How easy is it for people to understand the whole process?
  • b) How easy is it for people to make a claim?”


“Please tell us about the experience of having a face to face consultation with an Atos or Capita health professional.”

and, very relevant for MS:

Question 5: Where you have evidence of any of the following, please describe how effective the PIP assessment is: c. For people with conditions that change (fluctuating conditions)?

They are also asking questions about the appeals process, and about the time taken from making a claim to getting a decision, and what the impact of this has been on your life and finances.

I would urge you to respond to this consultation. I cannot guarantee that an independent review of PIP will trigger change, however, it is the first time that the Government has officially acknowledged how unhappy disabled people may be with this new benefit and it is your chance truly to have your say.

Have your say on new draft NICE clinical guideline for MS

6th May 2014 by Nicola Pates

NICE has published a draft of the revised clinical guideline Management of multiple sclerosis in primary and secondary care. The draft guideline* gives provisional recommendations that cover diagnosis, information and support, treatment of relapses, management of MS related symptoms and provision of services for the NHS in England, Wales and Northern Ireland.

This is a revision of the original NICE (National Institute of Health and Care Excellence) Clinical Guideline 8: Management of multiple sclerosis in primary and secondary care, first published in 2003. Several aspects of MS management, such as disease modifying treatments, bladder and bowel symptoms, pain and depression, are not covered by the MS guideline as these are covered by other NICE guidance or technology appraisals.

There are some good aspects to the new draft Guideline, and some that we haven’t decided about  - we are still working on it, after all! – but it also includes recommendations

  • not to offer Sativex (nabiximols) to treat spasticity in people with MS
  • not to use fampridine (Fampyra) to treat lack of mobility in people with MS

By contrast, we will be arguing that they should be available on the NHS to people with MS who might benefit. We know that these treatments don’t work for everyone, but we think that you should be able to try them if you are assessed as being suitable.

As I mentioned, we are working our way through the Guideline and may need your input on other topics. If and when we do, we will flag up specific issues on Facebook and through our blog, so watch this space!

Please let us know what you think. Only registered stakeholders can respond to NICE, but your individual experience would be very helpful in enabling us to draft a response that explains what people with MS may gain from access to these and other treatments. Please respond in 150 words or less, as this will enable us to include your comments in our response. We can’t guarantee to include all your responses in our submission, but are very grateful for all information received. Please respond by 31 May 2014.

*Two versions of the draft guideline have been published on the NICE website:

  • full version (610 pages, PDF) which gives recommendations together with full details of the methods and evidence used
  • shorter version (27 pages, PDF) which covers recommendations only.

The Guideline Development Group (GDG) which prepared the documents consists of three neurologists, a GP, a physiotherapist, two occupational therapists, two MS specialist nurses, a neuropsychologist and three people who either have MS or have a family member with the condition.

NICE intends to publish the final guideline in October 2014.

Alice Hamilton, Policy Officer