Evidence Submission (Personal Narrative): Young People with Multiple Sclerosis

Shift.ms is an online community where people affected by Multiple Sclerosis can support each other. Most people are diagnosed with MS in their 20s and 30s. Through the website they share experiences and information. They ask each other questions that only other MS’ers will know the answers to.

The Lancet Policy Matters magazine tweeted @shiftms to request information on how policy changes affect young people with MS. We put that to the community on our website – www.shift.ms – through Twitter and Facebook. We then collated the responses. These are personal experiences of MS’ers.

Marlo Donato says:

“I have not used any govt. assistance that I should have. I don’t even use the taxi service I am entitled to. It is an area that I lack in.

Anyone who claims any benefits would suffer greatly from cutbacks. The only way I would suffer at this point in time, is if MS nurses were cut back. They are my life line!”

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Emily Clarke says:

“The thing I am worried about is the changes to DLA. I’ve been told that there may be visits to test how able you actually are. I’m worried that due to the nature of MS if i was having a good day when I was tested I would lose my DLA which I rely on the help me with my travel to work costs.”

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Chris D’Souza says:

“If it causes them stress and associated worsening of symptoms then I think that’s how.”

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Funnybank says:

“I think there is a lot of confusion about what we are entitled to at the moment as service differs between areas. as to how this will change, i have no idea, and i consider my self-interested and politicised. There are so many variables involved in ms that you just don’t know what you will need or when you will need it. I was considering asking for an assessment to get a grant to fit a shower instead of a bath but i don’t know if my symptoms are bad enough at the moment but in a few months they may be worse again but the funding may have been cut in the council budget.”

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Cathy John (writer and blogger on MS www.lickingthehoney.org) writes:

“Current policy changes dramatically affect the lives of young people with MS.  In my experience they have a day to day impact, as well as casting a long, dark shadow of deep worry and (additional) uncertainty over our futures.  It is not just cuts to welfare and belt tightening within the NHS that impact on MS’ers.  Cuts and policy changes in all areas are having a negative impact on my life and hence my MS, as stress is proven to have a negative impact on the disease.

In the short term:

I am currently (due to local government cuts) being made redundant.  Whilst this is not discriminatory and my employer has been supportive and mindful of my disability status it has been a stressful process which has had a negative impact on my wellbeing and MS.  As an MS’er I face more of a challenge gaining new employment.  Within ten years of diagnosis 80% of people with MS are unemployed, which I find an appalling statistic especially as within ten years most people with MS would still be able to work on some level.

The Access to Work scheme has shared the cost of new computer equipment (to deal with my optic neuritis) with my employer and provided taxis to work to aid my mobility difficulties. I have heard this scheme is now being changed, or its assessments are being changed.  Hence I have the additional worry that when in a new place of work I may be assessed differently and the scheme might not be there to support me.  It seems counterintuitive to make this benefit more difficult to obtain.  For the sake of their health and the economy disabled people should be supported and encouraged to be in work.

Policy changes and belt tightening within the NHS mean: that I have less regular access to my physio; already there is little or no psychological support for MS’ers which give the weight of diagnosis is shocking- this will only be set to get worse with the proposed abolition of PCT’s.  MS’ers may be prevented from access to a new, oral and much more potent drug for Relapsing/Remitting MS xxxx due to its cost.  xxxx would significantly delay the disabling effects of MS. A GP recently told me that she thought chronic conditions (like MS) and psychology services would be worst hit by changes to the proposed changes to the NHS.  Great.

Of course many young people with MS will be much more disabled than I am and need care and adjustments to their homes now, as well as support due to loss of income.  These people may be anxious about changes to Incapacity Benefit (now Employment Support Allowance) and Disability Living Allowance (now Personal Independence Payment) and concerned about the new assesment procedures.  Many with relapsing/remitting MS are concerned that assessors won’t take into account the fluctuating nature of their condition.

Anxiety now, about the future:

As a single person, without independent means and a seemingly aggressive form of MS, I know my working life will be severely limited.  This means I cannot imagine a future life where I am not heavily reliant on benefits and social housing.  Now in addition to anxiety about my future health I feel that I cannot trust the welfare state will be there to support me when I need it.  I am fearful that I will not be able to get permanent tenancy in council housing which will be the only kind of permanent housing I can rely on.  I am worried that I will not be able to even afford local authority housing in the London borough of my choice given that rent is supposed to be moving more or less in line with market rates.

As my level of disability increases I am worried that Independence Allowance will now not step in to support me until I am in severe trouble.  The anxiety about how I will meet the rising costs of disability is considerable.”

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Catherine Doran says:

“Life with MS is one which can never really be planned. The nature of the illness is one of uncertainty, and as a result, constant worry. Thankfully I am fairly well at the minute, but the future is something I constantly think about.

 I currently work part-time having already cut down my hours due to fatigue but it scares me to think that I would not get proper support from the state if I had to give up work in the long-term. My husband and I have a young family, with our whole lives ahead of us (I am just 29) – it would be lovely to think the state would properly assist us in living a happy and supported life for those times ahead when I may not be so well. But I do not think that will be the case. And I would like them to know this – I didn’t choose to be sick and in the future the person with MS could as easily be you – it’s an indiscriminate and far-reaching illness, affecting men, women and children from every walk of life.

So please, when you talk of future policy look to the future – be long-sighted in your assessment of people like me. Yes, short-sightedness will save some money in the immediate years but in years to come you will pay for it ten-fold when those whose condition wasn’t managed properly find themselves deteriorating faster, needing more expensive and specialist care and inevitably retiring earlier.  Through a combination of reduced specialist MS nurses, consultants with longer waiting lists, drugs being denied because of cost, fewer physiotherapists and occupational therapists – the list goes on – this will not be a case of maybe, it will be a case of definitely.

Believe me, I want to be working and as self-sufficient for as long as I possibly can be because that means that I am well. I have already have MS, don’t punish me further by leaving me unsupported both by the NHS and financially too”.