Let’s get one thing straight. DLA is not an out-of-work benefit. In fact, it helps many people with MS stay in work.
The Government and media’s growing focus on ‘fairness for taxpayers’ leads many to believe that disabled people are a separate group who contribute nothing to society.
A Freedom of Information request, published in August this year, stated that the number of working age people receiving DLA is 1,839,000, of which the number of those in employment is 386,000 (21%). There are 127,000 people living with MS in the UK with just 50% of them claiming some form of DLA (63,680).
Working with a variable and unpredictable illness is difficult enough in a recession-hit economy and with hardening, right-wing attitudes towards anyone disabled, it’s no wonder the figures for those with MS in employment are so shocking:
- Fact – more than 75% of those with MS say their condition has impacted their employment and career opportunities.
- Fact – up to 80% of people with MS stop working within 15 years of the onset of the condition.
- Fact – up to 44% of people with MS retire early due to their condition (the European average is 35%).
- Fact – people with MS lose an average of 18 working years.
As DLA is phased out and replaced with PIP, people with MS will be forced to submit to humiliating re-assessments to check that we are indeed still living with a degenerative, incurable illness. Note the word ‘incurable’. Perhaps the Department of Work and Pensions should be renamed the Department of Miracles?
Working with MS means coping with reduced dexterity, cognitive impairment, limitations in mobility and overwhelming fatigue, among many other symptoms. Coupled with some employers lack of knowledge and understanding of MS and it’s easy to see how staying in the workplace can seem like an uphill struggle.
I’m fortunate. After a hideous year of relentless bullying by my previous employer and colleagues which ultimately led to me being sacked for having MS, I now work for someone who has taken time to learn about the condition yet is also aware of the strengths I can bring to my job.
DLA can make a real difference to people – just ask David Cameron, our venerable Prime Minister. The multi-millionaire (and son of millionaires and son-in-law of millionaires) once claimed it too…
Oh, ouch, but yes its true. What I would love to know is how many of those who have stopped regular work/jobs have now created their own work as an independent.
I’m one of the 44% (early retirement) and lost a good income. Now I’m trying to set up my own business. I can work my own hours and the fact is I have never worked harder in my life or enjoyed myself so much. So far no income but its on the horizon
I think the people who determine the hours a week for a particular job need to have their eyes opened and be educated especially in the private sector. The NHS and government encourage 20 hour week jobs, work at home and job share. People must be more open minded cos there are a lot of intelligent minds that are not being employed
Thanks for your reply! And you raise really interesting points – linked in a recent post I wrote about MSpreneurs?
I completely agree with you about new ways of working. Job shares/20 hours weeks, etc are a fantastic way to keep people like me in work. I still have an awful lot to give to the workplace and am nowhere near ready to throw the towel in just yet. I only need a few little tweaks!
Sorry I haven’t commented lately, gone to a dark place at the mo. Not depressed just lost my identity somewhat.
Your post today is very poignant for me as I have a PIP assessment tomorrow. It is my first application and when I applied I timed it so my husband could travel to London with me as I cannot go on my own. They cancelled less than 24 hours before. They phoned a couple of times trying to get me to re-book and I had to explain over and over again that I cannot go on my own. Eventually they agreed to a home visit but because I am mobile, the wait could be lengthy. That was in July so I was pleased to get the call on Friday.
I am nervous, really nervous about it all. I was very honest on my form so I’m worried about what she will ask me as I covered it all on the form. I hope she doesn’t use my Saturday job as a reason I don’t need help. They say you can still work whilst claiming, so we will see.
(Hope you got my twitter comment after your exam x)
so lovely to hear from you and thank you for your tweet! Really sorry to hear you’re in a dark place. I’ve been there and it’s horrible – please, you know where I am if you need a friendly ear.
Huge luck for tomorrow and let us know how it goes. I have spoken to a lot of MSers about this and they all say, do not put on a brave face, tell them what your worst days are like, not your best. Focus on what you can’t do (I know, we don’t normally think this way – it’s just for the assessment). They are only seeing you for such a short while, it’s not very fair.
Will be thinking of you.
I am one of the lucky ones who has been able to stay in full time employment after diagnosis 8 years ago; not sure “lucky” is the right word but feels most appropriate at times. I was turned down for DLA as at time of assessment I could walk too far unaided, and as I rarely visit my GP as stress of trying to get appointment sets my pain off, they had very little to say about my illness and how it can affect me; because they don’t know. What they fail to realise is that I would have used any money received to carry on with Hypobaric Oxygen therapy that got me back to work after 4 months off; and hopefully will aid me staying employed for longer. This and my Osteopath therapy is paid 100% by myself and what I believe helps me function but I cant afford to have it every month.
Thinking about it I am saving them money….saved costs in GP and hospital visits and reduced benefits as I am still earning a wage and will do so until it becomes impossible to do so.
This moaning aside, I count my blessings each day that I manage my MS as well as I do…even those horrible and sometimes degrading symptoms that catch you at most inconvenient times and places.
Excellent points. And exactly what people forget – that a lot of us pay a lot of money to keep ourselves in work. I know I would be far better off giving up work and claiming benefits.
Such a shame about the DLA – do you have an MS nurse who could vouch for you on the forms? Know what you mean about the stress of getting an appointment with the GP, and more often than not, they know very little about MS.
There’s a great scheme, Access To Work, but I think (I might be wrong) that it only counts towards things like transport to work. Wouldn’t it be great if it also covered things such as osteopathic treatment and oxygen therapy?
Thank you so much for making the post more real. Really appreciate it.
I’m in a strange place at the moment. Having been told initially in August 2012 that I had MS then a question mark was put over that diagnosis as they were unable to rule out NMO to now being told that my diagnosis is aggressive CNS inflammation that may turn out to be NMO … Neurology isn’t an exact science …I understand that …but is do feel very isolated
Since becoming ill I have, a number of times, been on the receiving end of discrimonation. It’s a horrible place to be. You make some valid points in your blog. I am unable to comment any further as I haven’t really enough experience of the system to make a valuable contribution. However I would be interested to know how people get on with PIP assessments x
So sorry to hear you’re in a medical limboland. Excuse my ignorance, but I’m not sure what NMO is?? I completely understand that you must feel isolated – you will always have a welcome here. A diagnosis of MS is never a nice experience, but at least it allows you to ‘move on’ and concentrate on learning to live with it.
I’m hoping to hear soon from other people who are starting to go through the PIP assessments too. Fingers crossed for everyone facing it.
Sorry … NMO is Neuromyelitis Optica. Often gets confused with MS as a lot of the symptoms are the same but the treatments very different. Still demyelating disease but often you are worse after each relapse from what I’ve read. Disabilities are accumulative. It affects the optic nerves and mobility more. It is rare. So I’m between a rock and a hard place. No ones fault …. But still not easy
Thanks Angela. So, if the symptoms are the same but the treatments different, I’m guessing it’s imperative to know as soon as possible which one it is so you can start treatment to slow down the disease progression? Must be incredibly frustrating for you. The fact that they’ve ‘changed’ your diagnosis too.
In some ways, my diagnosis was slowed down somewhat as I didn’t present with any optic neuritis symptoms (and never have). My first recorded relapse affected primarily my speech which apparently wasn’t a classic presentation. It all seems a very random process.
It is very random. Disability is accumulative with NMO so after each relapse you are worse and I have followed that pattern. I have lots of problems with my eyes and my mobility has deteriorated over the last year. Apparently the spread of lesions in my brain and neck are not typical for MS but my antibody test for NMO was negative. It is very frustrating and hence the reason why I have been on prednisolone for such a long time. At least the pain is under control now xx
Have they given you a lumbar puncture to test for oligoclonal bands or are they found in NMO too? Sorry for all the questions – really interesting to learn something new.
Must be hard being on prednisolone for so long. I’ve only ever had it for 5 days at a time and I was climbing the walls.
That’s ok … I have lots of questions too but no one can answer them. I had a lumbar puncture June 2012 and there were weak ogligoclonal bands. I haven’t had another since then but I’m going to ask if it’s worth doing another when I next see my Consultant. I’ve been on Prednisolone on and off since August 2012 I’ve also had two lots of IV Methyl pred. I’ve been on 60 mg of pred since March but now in the process of reducing it and weaning me off to gauge where I am without it. So far so good. Although a lot of my existing symptoms have returned nothing new has happened …. So far so good x
Thank you for not minding the questions! Hopefully your consultant will refer you for another lumbar puncture? Seems awful to be on steroids so long but glad you’re ok with reducing them.
But – if you’re having a flare up of symptoms as you’re reducing your steroids, then that’s not so good?
(if my neuro’s reading, please could you look away now?) When I was going through the diagnostic process, I researched everything, a bit like you. I felt like I was being pushed from pillar to post, i.e. I knew something was very, very wrong. I was having relapse after relapse. So in a weird kind of way, to finally hear I had highly-active or rapidly evolving RRMS, it was a huge relief. I actually wasn’t going mad. I could stop banging my head against a wall.
I must admit I feel a bit lost at the moment. That’s no ones fault. You know as well as I do that the journey to diagnosis is a difficult one. I’ve read anything and everything but now I’m tired of reading. I just want to know what I’m dealing with. Is it NMO or will we go back to the MS theory ? Who knows. I’d rather be able to turn the clock back and be fit and well but as that isn’t going to happen then I need to know what is causing this. I’ve had that many flare ups and exacerbations even on the steroids. I know a flare up of existing symptoms isn’t good but I do need to come of the steroids despite the risk of a relapse. Feel like I’m in a revolving door sometimes. Sorry I’m babbling x
You’re not babbling! It’s a terrible situation. When I was going through the whole diagnostic process, I actually thought I’d have a nervous breakdown. Probably one of the most stressful things. They don’t call it limboland for nothing. Life stops. Like you, I read absolutely everything I could get my hands on and became quite the expert at deciphering scientific papers and academic studies.
MS is stressful, but not half as stressful as not knowing what’s wrong.
I feel so frustrated for you 🙁
Frustration…..it’s a demon and stress just makes things worse as you know. When I was told I had MS … Well it wasn’t the best news in the world but at least I knew what I was dealing with and I could just get on with my life and it seemed like there was light at the end of the tunnel when I was offered treatment. Then because NMO could not be ruled out the light was switched off and here I am in limboland. During the past sixteen months I’ve gone from walking independently .. Sort of …to using a stick to using a wheelchair to using a combination of stick and notability scooter. I don’t feel sorry for myself … I just get on with it and laugh at myself …I’ve not lost my sense of humour … but I do feel a little lost …like I don’t belong anywhere x
So they haven’t offered you the treatment they would have offered if you ‘kept’ your diagnosis of MS?? That’s crazy. You’re obviously experiencing progression of something, so something must be done, with or without a label. So, so unfair.
And please don’t feel you don’t belong anywhere. If you don’t mind my rambling offerings, you’re always welcome here. It’s a friendly place! And feel free to email me privately – just contact me through the site and I’ll get back to you.
Just a quick (and belated) note to Angela to say this blog IS a very friendly place, and Stumbling in Flats is an excellent friend! Hope you get some answers soon.
That’s lovely! Hopefully that’s exactly what this blog is all about. I was talking to a guy at the ceremony yesterday, saying that blogging is most definitely a two-way process. I’ve made some amazing friends here.
Me too! 🙂
Aw bless 🙂 We’re a friendly bunch.
I was slowly and firmly pushed out of a vocation as a ward sister ,having been on the same ward for 29 yrs ,to say I was devastated is an understatement along with anger and bitterness , the very people who cared for the sick had no understanding of my condition , they perceived I wouldn’t be able to do my job so out the door I was shoved ..no assessment no compassion … Well I have the last laugh .. I now work for Occupational health and I try every which way to help people who are unfortunate enough to be in the position I was in , I now know what they are entitled to and boy do I tell them ….I have had to take early retirement reducing my income drastically ,work at a much lower grade ,medical staff cannot begin to know what it feels like to be in our situation ,all I say to them is “walk a mile in our shoes ” but eh that would be a miracle in more ways than one …….. Keep up the good work
An all too common story and you seem to have been treated appallingly. So glad you’re having the last laugh though.
For other people, it just seems that all this talent is going to waste – especially as MS strikes at a relatively young age. Very, very sad and something needs to change.