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Degenerative conditions

‘Confined to bed’. ‘Restricted to bed’. Bedbound, bedridden. Words and terms that sound so pitiable. So pathetic. So awful. A life that’s hardly worth living. The end of ever having a ‘normal’ life again. Better off dead. But that’s not the case. It doesn’t have to be like that. Being stuck in bed most of the time doesn’t have to mean it’s all over and life is finished. There is so much that can still be done, so much left to do, so much life yet to live. I know there are many people who are in horrible pain or, at least, in considerable discomfort for much of the time and I can’t speak for them as I haven’t experienced it and don’t fall into that category, but there are also lots of people, like me, who are just unable to get up much because of their impairment. This can be due the medical equipment they need to stay alive, due to the lack of help and support they have or at least, just because its such hard work to do it and its often not worth the effort. I’m one of that category.
With assistance, I can get up and sit in my wheelchair and go out but I usually just can’t be bothered. It takes several people, lots of planning and a whole load of equipment to get me into my wheelchair and ready to leave my room. So much faff and palaver. And then, of course, we would have to do the reverse to get me back to bed later on, when I return, so I usually just don’t do it. Another two hours of my life, one at either end of the day, that I wouldn’t get back. Why go through all that if I’ve nothing to do, nowhere to go and no-one to see. Might as well just stay put. Most of the things I would do if I got out of my bed can also be done from under my duvet anyway so most of the time, that’s where I stay. Shopping? I can get what I want online and have it delivered straight to my door. I can get items from anywhere in the world, not just my local high street, and it’s all so very easy. Meet with friends for coffee? I have some lovely friends who come around to my house to visit regularly, with delicious treats and gooey cakes so that we can indulge ourselves together, here. I’m considering buying a coffee machine too. Last of the big spenders! Trips to the cinema? Netflix is a thing and I have a Dvd player. Meet new people? Hello Facebook and Twitter! Loads of people from all over the world to chat to there. Get a job? More and more employment opportunities are available online which can be done from home. Amongst other things, I’ve done envelope stuffing, entered responses from surveys onto a database and worked on a National helpline where I provided advice, information and assistance to callers by phone, email and letter. Continue my education? I am considering doing a course online through Open Learn or the Open University or with one of the plethora of US universities which have online courses. The world of education is, as they say, my oyster. Be involved in local life? All things are possible. I’ve stood – well, lain down any rate – for election to my local Council and I’m involved with local pressure groups, trying to improve life for everyone in my area too. They all have websites, with a Social Media presence, and so do I. And National Politics is not a no-go area either. I can be involved with that too. I’ve been a member of the Party for many years and I’ve been on the national Executive for the Liberal Democrat Disability Association for several years. I was recently on a selection panel for a role at HQ which was conducted by phone and online and that all went very well. I was very much involved with the whole process, felt that my opinion was valued and considered and never got the impression I was just a token towards diversity and inclusivity. Hopefully, I’ll get the chance to do something similar again in the future. I am also a bit of a teacher too. Once or twice per year for the past 4 or 5 years, my lovely GP has sent a group of medical students from Kings College Hospital round to visit me so I can help them learn how to work with people like me and develop their ‘bedside manner’. I consider this to be helping lovely GP with her work, a valuable lesson for the students tat they can’t learn from books and I love doing it. Its part of my way of ‘giving back’ and saying ‘Thank you’. If it means that even just one of them, becomes a better, more empathetic medic as a result then I’ve done my job, made a difference and I’m happy.
And then there are the hobbies and activities which can all be done from or in my bed too. I like writing. Both fact and fiction. I have had my work published in the National Press, written articles for magazines and journals and have been commissioned to produce items for various websites on a variety of topics. I also have fun every year with something called ‘Nanowrimo’ or National Novel Writing Month. This takes place worldwide every November and participants are challenged to write a novel of at least 50,000 words in just 30 days. Thousands take part and its such fun. Your imagination runs riot and the words can just flow. Several people have written best-selling novels after taking part in the challenge but, even if you don’t, its still really good fun trying. I’ve done it twice so far, achieving my 50k once, and I have an idea bubbling at the back of my brain for my next attempt. Whether anything comes of it, watch this space but, if nothing does, there’s always next year!
Spending most of your life under a duvet is no longer a reason for withdrawing from the world and slamming the door shut. There are plenty of things to do, people to meet and ‘virtual’, places to go so I’m off to meet, do and visit them all as soon as I can. Why not join me, it’ll be fun!

I am so happy.

Saturday was a good news day for me.

After several weeks of waiting, I finally received the two brown envelopes through the letterbox which told me how I’d done with my enforced PIP (Personal Independence Payment) application and my ESA (Employment Support Allowance) reassessment and I was successful for both Benefits.

And, further to that, a very good family friend also received her brown envelope for PIP on Sarurday as well and she’s been successful as too. Virtual High Fives all over our social media pages let me tell you – we were delerious. We both got to sleep properly for the first time in quite a while that night and we can now both breathe freely once more because we know that our finances are guaranteed for at least the next few years at any rate.

Brilliant!

But, there is something we both want to know. Why is it that the maximum award we could receive was for ten years and then we will both need to go through the full assessment procedure once again.

Why?

Why just ten years?

I have MS. I am unable to walk, work or care for myself at all, I am a wheelchair user, I cannot dress myself, wash or bathe myself, prepare my own meals or feed myself without help. I have a catheter and I spend the majority of my time stuck in bed, and I am not going to get any better. I can only ever stay the same or, as is more likely, get worse. My friend has a visual impairment. She cannot see to look after herself or her child. She also needs help with so many things on a day-to-day basis. And, guess what, she will never recover either. Just like me she will stay the same or get worse for the rest of her life. There is no magic bullet that can cure either of us. And, for both of us, this is for always. This is for ever. Our impairments are degenerative and incurable. And, thanks to our impairments, neither of us are to ever be able to work and support ourselves, however much the Government would like us too.

But, here’s the thing. Both of us have been transferred to PIP from the old Benefit, Disability Living Allowance (DLA), where we both had life-time awards. Now we are in receipt of PIP, we don’t. The old Benefit understood that neither of us would improve – ever – so we were given awards that recognised this fact. Under DLA we both recieved awards that meant we would not be pestered, made to fill in intrusive and invasive forms the size of a small novel, questioned, examined, prodded, poked and assessed as if we were making it up and were lying about the difficulties we had in our everyday lives because of our impairments. Thanks to the transfer to PIP, we will now have to go through this all over again in ten years time. And, if we survive that, ten years further on from there too. And we’re not the only people to experience this. Other people with incurable, lifelong conditions are getting the same result. Ten years is the max.

Do the boffins at the DWP know something we don’t know? Is there a cure for MS, for blindness, for so many other impairments just round the corner?  

All this ten year thing will do is cause worry, stress and countless sleepless nights for disabled people and their families and cost the Tax-payer millions. People with incurable impairments will need to be sent forms to complete that have to be printed and posted at a considerable cost to the State. People with incurable impairments will need to undergo unnecessary assessments, undertaken by paid assessors at home or at disability testing centres at a considerable cost to the State. People with incurable impairments will need to be sent letters and copies of their assessment reports telling them they have been re-awarded their Benefits that have to be printed and posted, at a considerable cost to the State.  It does not make sense.

What’s wrong with having a Life-time Award for disabled people with incurable life-long, degenerative impairments? An award that recognises that there are some disabled people who will never get better and will always need help. If people are already getting the maximum award they can get and can’t improve, what’s the point in checking to make sure that they still can’t do the things they couldn’t do ten years earlier? If there is no more money available, if the award cannot go up, if things can’t change what’s the point? People who are not going to get better don’t need to be reminded of this fact every ten years.

Once someone has been assessed, if they have been awarded the maximum available and there is no chance of anything changing apart from things getting worse then just leave it alone. Stop the endless form-filling, stop the endless prodding, poking and assessing, stop the printing and posting, stop the endless stream of brown envelopes, stop the stress, stop the worry. It benefits no-one, it saves nothing and it’s all  done at considerable cost to the Taxpayer.

I am completely and utterly fed up.

Why can’t the DWP just leave me alone.

I have received yet another lengthy form from them which I have to read, complete and return, by the beginning of April.

This time it’s for a ‘Capability for Work Assessment’.

Its not the first Government form I have had to complete recently either. I had to deal with a Personal Independence Payment (PIP) form only last month after they decided that I, alongside many, many other disabled people, needed to be transferred from the Disability Living Allowance (DLA), which I have been receiving since 1998, to the new PIP Benefit instead. It’s not even as if completing either of these forms will give me any more money, the amounts will remain at exactly the same, pitifully small, levels. We never get any type of pay rise whatsoever.

And, as far as my impairment is concerned anyway, there has been no miracle cure either. No improvement, no divine intervention and no miracle medical advance in the past quarter of a century. My Multiple Sclerosis hasn’t got any better during the intervening years between diagnosis and now, it has only got worse. Thirty years on and it has only ever deteriorated.

But, despite this lack of movement, I still have to go through the form filling merry-go-round all over again.

What a complete waste of my time, their time, my ink, their ink, reams of their paper and their postage.

It’s not as if they’re short forms either. They expect me to write a novel, citing chapter and verse, excruciating detail after excruciating detail, about my condition and how it affects me on a day to day basis for every single question and there are an awful lot of questions. The new form is twenty-three pages long, the PIP form was much longer. I even have to give full contact details for my GP, my specialist nurse and my Consultant so they can all be sent a form to complete too where they will be asked to confirm that I’m not lying, exaggerating my condition or trying to cheat the system.  

I realise and fully acknowledge that the Government needs to make sure that the Taxpayer’s money is spent properly and wisely and that the people who are in receipt of Welfare Benefits are actually entitled to the money they are claiming but, for a disabled person diagnosed with a well-known and well-documented, degenerative condition which is never going to improve, however much the DWP, and I would like it, is, in my opinion, pointless.

I am now restricted to my bed most of the time, only able to get up for, at most, one day at a time from 10am until 8pm and then needing 3 or 4 days recovery in bed afterwards before I can do it again. I cannot get out of bed or dress myself without help from two trained carers. I need to be washed and dressed by someone and then hoisted from my bed and put into my wheelchair for the short periods when I do get up.

Exactly how many times and in how many ways do I have to tell the DWP that I cannot walk, cannot stand, cannot move from one chair to another unaided, am doubly incontinent, have a catheter, and have to use an electric wheelchair. I cannot write with a pen or pencil, lift a carton containing a pint of liquid, put something in my top pocket, fold a letter and put it into an envelope  or even move an empty box  without help.

Why can’t they just leave those of us with a life-long, incurable, degenerative impairment, such as MS, alone, once we’ve told them about our condition and the affect it has upon us. Do they think we need to be continually reminded of the effects of our conditions?  No matter how many times they ask, and regardless of the never-ending avalanche of paper they keep sending me, when will they realise I am not going to get better and that having to complete form after form is not going to help.

I would dearly love to be able to get up and go out to work but it’s not going to happen. All these endless forms do is make me feel depressed and distressed thanks to being constantly badgered and reminded what I can no longer do and what I am unlikely to ever be able to do again. They don’t ‘incentivise’ me at all so stop trying. Read my responses on both this, and the previous form you sent to me, make a note of them and then employ a little bit of common sense before you try asking me again. I’m stuck with this disease until the day I die and I don’t need you to keep reminding me. I am well aware of that fact without your havy-handed and insensative intervention.

I have only one further thing I want to say to you on this subject and I would be grateful if you listened for once.

Please leave me alone…