Tuesday, 21 June 2011

Ready to Work? Meeting the employment and career aspirations of people with Multiple Sclerosis


We had a successful outing to the Houses of Parliament yesterday for the launch of the Work Foundation's report into working life years and MS. Here's a link to the report: click here 

And here are the main findings:
  • On average, 37 per cent of people with mild MS are employed, however, many have to change or quit their jobs due to fluctuating functional capability; 
  • More than 75 per cent of people with MS report that the condition has impacted their employment and career opportunities;
  • Up to 80 per cent of people with MS stop working within 15 years of the onset of the condition;
  • At the same time 30 per cent of individuals with a significant level of disability remain in employment; 
  • Up to 44 per cent of people with MS retire early due to their condition – a higher percentage than the European average (35 per cent);
  • As a result of reduced availability of social services, a considerable burden of the costs associated with MS falls on those with the condition and their carers;
  • Professional careers of 57 per cent of relatives are adversely affected by MS of a family member;
  • People with MS lose an average of 18 working years, assuming a retirement age of 60. 
  • If one worker with MS draws Employment Support Allowance (ESA) for 18 years the total cost (at 2011 prices) will be £61,000. If 20,000 people are on ESA benefits for 18 years the cost to the welfare system is over £1.2 billion. This takes no account of the income tax which these workers would be paying;
  • The annual costs of MS may vary from £12,000 for those with low disability scores to £60,000 for those with severe disability stage. One estimate suggests that MS costs UK society about £2.3 billion per year.
Be interested to know your thoughts on this report.

Posted on behalf of Beki Hawes (beki@shift.ms) 

"This post is for those of you who need reminding of what the socioeconomic impact of MS is for the individual and the UK. Quite staggering! What do you think?"

6 comments:

  1. Very staggering figures. Eye wateringly staggering. If anything, these statistics go to show just how degenerative MS is. It also demonstrates how the UK job market is so woefully inept at keeping PwMS in the job market compared to its European counterparts.
    MS is a vile disease as well as a costly one. I live with my parents now because my MS has gotten pretty bad. I gave up work because of my illness. I am 30. I will be a drain on the welfare state for life. A proportion of my parents’ pension will now have to be sectioned for my needs. Once my parents are gone then I guess carers will have to be provided at great cost. I have no one other than my mum and dad so it will have to be the council’s responsibility to help me for the rest of my life. This disease will be tough on me, but it will also be tough on the state and tax payer.

    So how about we think of ways to improve my situation. How about more government investment in research to stop me from getting worse. How about doctors try to be more inventive in their approach to providing treatments that actually make a difference so that I can have a productive life again.

    Life with MS will always be difficult but methinks social and economic factors will eventually make it horrendous. I worry more about struggling financially in the future than what I do about my health. That’s not right.

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  2. I'm glad this issue has been raised. I currently work full-time and have very understanding employers who have given me all the flexibility and adjustments I've needed to make my life easier. Much of this understanding has come about from me being completely open about my condition, how it affects me and what I need to keep my productivity and performance at its best. I realise, however, that I am lucky in this way and that there are plenty of MS'ers who would like to work but are unable to because the flexibility and/or understanding just isn't there.

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  3. I did not know the financial figures, on reflection the cost to the country really does not surprise me. What someone needs to find out is the the type of MS that the majority of the people suffer from who have been forced to stop work plus did these people really want to give up work? Is there any assistance or help for those who want to work but cannot for one reason or another? There must be an awful lot of people with skills that are not being used, how can the country stop these skills going to waste. If some of these people can resume work then I'm sure the benefits will be enormous. Loads of questions there that need answers and I think the answers might sharpen a few minds.

    By the way I suffer SPMS, not a bundle of fun, I've got the obvious problems such as fatigue, mobility and balance but luckily I'm still able to work but for how much longer doing my present job, then what next?

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  4. Given that we are in the age of austerity and that the public sector is really being cut back, not the best time for the report. As a professional (accountant) with MS I still work full time. But I don't want to be a charity case. I studies hard and passed my exams etc and have wide experience. However, if I can't be a productive member of my employers workforce, then I don't see that I have a right to continue in work. 'Reasonable adjustment' is not something I will be seeking - I shoudl be employed for my hardwork, commitment, knowledge etc. I know that sometime in the future my career will end (earlier than I had planned), but until then I'll work in the same way as my colleagues. MS takes away so much, and a long career / promotion is another area which this disease damages. If only the researchers coud stop progression / encourage repair then we coudl all work on until the normel retirement age. While the costs are huge, the £12K spent each year per patient on injectibles which are only partially effective is the biggest scandal.

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  5. Like the other posters, I feel that a lot of talent is wasted, as PwMS get to a point where they can no longer work. If they were in paid employment they would be contributing in many ways, not least in taxes. Being in work brings benefits such as self esteem and a connection with society, which in turn keep mental health on an even keel. Sometimes adjustments to a workplace need only be minimal in order for someone to continue or start in work there, eg removing mats/rugs/carpets and replacing with hard flooring.

    Good that this report has been produced.

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  6. Here's a blog post I wrote on the Work Foundation blog. It's about Shift.MS'ers and work.

    http://www.theworkfoundation.com/pressmedia/blogs/blog.aspx?oItemId=498

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