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Archive for the ‘Action for MS’ Category

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 their 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.

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

Have your say about the NHS complaints process in Wales

2nd April 2014 by Nicola Pates

Mark Drakeford, Health Minister for Wales, has appointed Keith Evans, former Chief Executive of Panasonic UK, to conduct a review into how complaints and concerns are handled within the NHS in Wales.

Keith Evans has asked anyone who has recently had a complaint handled by the NHS in Wales to send confidential feedback on their experience to the review team. They are asking for positive as well as negative experiences, to find out what worked well and why, as well as poor experiences and why these were negative.

The review will:

  • review the current process to determine what is working well and what needs to improve
  • consider if there is sufficiently clear leadership, accountability and openness within the process
  • identify how the NHS in Wales can learn from other service industries
  • consider the wider cultural ‘patient’ service ethos and how staff are supported to deal with patient feedback
  • identify how the NHS can demonstrate it is learning from patient feedback

The deadline for comments is 21 April 2014.

Individuals – both patients and the public – can email their confidential feedback to or write to: Keith Evans, Aneurin Bevan University Health Board Headquarters, St Cadoc’s Hospital, Lodge Road, Caerleon, Newport NP18 3XQ

Alice Hamilton, Policy Officer

Scotland passes new law to make health and social care work better together

6th March 2014 by Shan Teo


The snappily titled Public Bodies (Joint working) Scotland Bill  was passed by the Scottish Parliament at the end of February, which means it now becomes law.

This new Act sets out the structure and legal framework for making health and social care work together. The aim is to change how services are provided in favour of preventive services, rather than reactive services – a good example for MS might be access to good community continence services, rather than admission to hospital with urinary tract infection.

The Scottish government plans to disband Community Health Partnerships and replace them with integrated community partnerships, which will have pooled health and social care budgets and be responsible for providing both sets of services at a local level.

What organisations have to do will be defined through regulations, which have not yet been published. There will be a ‘minimum scope’, which will include social care services, primary care health services, and probably some services provided by acute hospitals.  The implication is that successful organisations may include more services than the minimum. Regulations will also set out national outcomes for health and wellbeing. These are likely to be high level, general improvements in health such as reducing the number of premature deaths. No timescale has been given for publishing the regulations.

Alice Hamilton, Policy Officer


Have your say: proposed new carers’ legislation for Scotland

24th February 2014 by Nicola Pates

The Scottish Government is consulting on changes to the laws that apply to carers living in Scotland. They have some ideas and some questions. The consultation is open until 16 April 2014.

In brief, their proposed changes include:

  • renaming the carer’s assessment the Carer’s Support Plan
  • changing the rules so that all carers become eligible for a Carer’s Support Plan, regardless of how much caring they do, or whether care is paid for by the state rather than by the individual
  • allowing carers to ask for a Carer’s Support Plan, as well as for local authorities to offer one
  • making assessments portable, so that the same level of care will be provided throughout Scotland if an individual and their carer moves
  • introduce a duty for local authorities to tell people about the Carer’s Support Plan, and to provide support for carers and young carers
  • changing the way support works for young carers (child carers) who then become adult carers
  • more involvement of carers and carers’ organisations in planning and delivering services and support
  • a proposed new duty that local authorities must collaborate with their relevant Health Board to develop carers’ strategies every three years

Their questions include:

  • should they introduce a duty to provide short breaks?
  • how to encourage GPs and local authorities to identify where individuals are undertaking caring responsibilities?
  • dealing with apportioning costs and responsibilities where the carer lives in a different local authority area – or even country – from the person being cared for

Please respond if these changes are likely to affect you, in either a positive or a negative way. This is a formal consultation so there is a set form for responding to the consultation, here:

Alice Hamilton, Policy Officer

What we said: NICE guideline on coordinated transition between health and social care

12th February 2014 by Nicola Pates

Everyone would like hospitals to talk to social services when they are planning to let someone leave and they need help once they return home. Particularly when going home isn’t an immediate option: when a stay in rehab, in a nursing home or even in a residential care home is the next step.  We all know that some hospitals are better at planning this than others.

As part of its new role to look at the quality of social care, NICE is devising a new guideline on ‘Coordinated transition between health and social care’, to set out best practice in managing that gap between hospital and moving home or to another environment. We’ve responded to their initial scoping document, which sets out what they will and won’t consider.

By and large, the scope seems quite sensible. However, our experience is that the following issues can arise, and NICE didn’t seem to be considering them:

  • a lack of suitable supported or adapted housing, including residential care, for people aged under 65. Sometimes this is available but is miles away from where the person wants to live;
  • lack of carers. There is a blithe assumption underlying this guideline that a care package just needs to be put in place and then someone can leave hospital. It ignores the fact that in some areas there are simply not enough carers to support those people who need care.

We will keep an eye on this to see how it develops.  Social care guidance is a fairly new departure for NICE and we still don’t know what practical impact this has. So watch this space…

Alice Hamilton, Policy Officer

Disability and health employment strategy: the discussion so far

22nd January 2014 by Shan Teo

The statistics for being in any kind of employment if you are disabled are grim. The government knows this and has decided, rather late in the day, to accompany its plan of reducing the benefits bill for all disabled people with some ideas to improve opportunities for getting into and staying in, work. The Department for Work and Pensions has published a new Disability and Health Employment Strategy: the discussion so far that sets out a range of proposals to improve employment chances for disabled people. We are promised a follow-on document in 2014 around how these proposals will be delivered.

Some of the significant proposals are:

- creating a One Stop Shop for employers that will include

  • an Information Portal giving employers easy access to information about their obligations under the Equality Act 2010
  • account management for larger employers, supporting them to attract, recruit and retain more disabled people and people with health conditions
  • advice and toolkits for smaller employers

- improving the Access to Work programme – but there’s no indication of any more funding for this;
- providing links to the new Health and Work Service, by providing more direct access to expert help on occupational health

There are also proposals for more specialised employment support to hep individuals get into, stay in and progress in work. It’s difficult to know whether this will translate into employment support advisers who might actually know something about MS.

There are also some rather woolly proposals around better support for individuals with common mental health conditions, including developing an Outcome Indicator for GPs around their employment. This probably won’t have any positive effect on people with MS.

So, as always, a mixed bag. We need to see the detailed delivery plan of how these proposals will be put into practice to assess how useful it might be for people with MS who want to work but are currently unable to.

The original document is here:

Author: Alice, Policy Officer

What we said – new strategy for better care for MS in Wales

20th January 2014 by Nicola Pates

Back before Christmas, which seems a long time ago now, the Welsh Government issued a consultation on a new Delivery Plan for neurological conditions. While this was basically sensible – aiming to improve speed of diagnosis and access to fast and effective care – we thought it put too much emphasis on getting to care in hospital, and not enough on providing access to care in the right place at the right time, which for most people, is getting access to care close to home. We believe that this is particularly a problem for people living in rural areas of Wales, which in practice is most of the country except for the south-eastern corner.

Anyway, you can read what we said (Word doc, 27 KB), and then decide whether you agree! We will have to wait and see whether our comments have any effect at all on how services will be provided in the future.

Alice, Policy Officer

Proposed new strategy for neurology services in Wales

5th November 2013 by alice.hamilton

The Welsh Government has published a draft document, Together for Health: the neurological conditions delivery plan. The first major strategy for neurological conditions, including MS, to come out of Wales in over five years, it proposes the following six themes to improve care for people with all neurological conditions in Wales:

  • raising awareness of neurological conditions
  • timely diagnosis
  • fast and effective care
  • living with a neurological condition
  • improving information
  • targeting research

This is a draft strategy which means that the Welsh Government is consulting on it, gathering comments and views until 31 January. The MS Trust will be responding  and would love to have your thoughts and experiences to feed into our comments.

Two of the main points we will be raising are:

  • issues around equity in access to MS services, particularly in rural Wales, and for access to specialised services such as neuropsychological services and neurorehabilitation
  • prompt access to treatment. This is not currently part of the draft strategy, which is concerned with access to services, ie getting to see a neurologist in the first place

Please, please also respond directly to the Welsh Government. Services will only improve if you, as the people who elect Assembly Members, make a noise and ensure that your voices are heard.

Alice Hamilton
5 November 2013