Skip to main content Skip to navigation

MS Trust Blog Home

Archive for the ‘Action for MS’ Category

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 http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx 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?”

and

“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
puttingthingsrightreview@wales.nhs.uk 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: www.scotland.gov.uk/Publications/2014/01/4757/18.

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