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Disability rants

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.

OK Theresa and Jeremy and Tim and Nicola and Leanne and all the other pavement walking, door knocking, Manifesto-pledging Parliamentary candidates currently pounding our Nations’ streets, I have some questions for you. And, as a disabled person, I’m pretty sure there are many others from my community who have questions for you too. Why are you not speaking to us? Don’t we count? Don’t our votes matter to you? I hope not.

What I want to know, exactly, is what the political big-wigs and hard-hitters and movers and shakers in this country can offer to us? What promises can you give to all of us. What promises or pledges will you make to us? According to all the statistics I have been able to find, there are around 12-13 million disabled people in this country, what are you going to do to our lives any better for us? Are you totally disregarding the collective power and magnitude of disabled people’s votes and the votes of our families and friends? I hope not. Do you really think you can continue to either demonise us or watch others doing the demonising without us noticing? I hope not. Are you going to continue putting our needs to the back of the queue? I hope not. Are you going to go on ignoring us? I hope not.

Well, here are my questions at any rate.

We are told that Social care in this country is in crisis. That there is not enough money to pay home-carers and unpaid carers a decent wage or benefit that reflects what they do to support and enable us. What are you going to do about it? We are the net users of that care, what are you planning on doing to alleviate the situation and ensure that we get the care we want and need to allow us to live our lives to the full?

What are you going to do?

Many of us need to use aids and adaptations in our daily lives such as hoists and wheelchairs and hearing aids and aids for people with visual impairments. What are you going to do so that we can all get the best equipment we need to live without having to fight for every nut, bolt, screw, , plug, cable and electronic component?

What are you going to do?

Then there is the constant battle to find a home, a place to live which can cater for our access needs and accommodate us properly and in comfort. It’s often one of the greatest obstacles we face but one where we appear to get little or no help in getting what we need. What are you going to do to ensure that there are houses and flats and bungalows available which allow us to live in the community with our families, alongside our friends and neighbours without having to fight for funding for alterations and adaptations?

What are you going to do?

How are you proposing that your party will ensure that disabled children and young people can receive the education they need and deserve alongside their non-disabled compatriots? How are you going to try to ensure that they can all study together and not be segregated due to an impairment meaning the school or college is physically inaccessible for all?

What are you going to do?

Everyone falls sick at some point in their lifetime, what are you going to do to ensure that everyone can access the healthcare we all need and not find it being rationed according to how much we need it and how expensive it is? How are you going to give us access to the doctors and specialists and the nursing professionals we need in our hospitals? Are you going to ensure that these professionals receive salaries that reflect their skills and dedication? Are you going to make sure that they have working conditions such as hours and breaks that allow them to do their jobs to the best of their ability and not want to leave?

What are you going to do.

Then there the employment thing. We are told that everyone must work and get a job. What are you going to do to ensure that disabled people who can work get the support they need to do so safely and successfully and that those that can’t work due to their impairments are not demonised and punished for daring to be sick and disabled. Many of us would like to have the opportunity to do something, however small, what are you going to do to help us? How are you going to promote disability in the workplace so that those of us who can work and want to work get the support we need and the opportunity to do so?

What are you going to do?

Talk to us and tell us how you are going to help and support us. Why should we vote for you and your party as opposed to the other parties and their candidates? What are you going to do that will make a difference for us? Don’t write off 13 million potential voters. Please talk to us and tell us what you’re going to do to help us. If you want my vote give me a reason to put my cross next to your name on the ballot paper. What difference are you going to make to my life? Why should I vote for you, please tell me.

What are you going to do?

What is it about being a disabled person which means that everyone seems to think they have a right to know every grisly detail about your life? What is it about having a wheelchair that make you suddenly become public property?

I have not always been a disabled person, I used to be, what is laughingly called, ‘normal’. That’s how I grew up, but, when I was in my mid twenties, everything changed. I became ill and was diagnosed with an incurable and degenerating condition. Not my fault, not what I wanted, not what I was expecting, not my life plan, but it happened and there was nothing much I could do about it except to deal with it and carry on. Life is, after all, for living, whatever hand you have been dealt and however hard it seems to be. Plans change, situations change, everything can change. Nothing ever happens the way you expect so you just have to adapt and do the best you can with what you have. After all, you only get one go at life, what you have is not a rehersal, so, in my opinion, you have no option but to make the most of it and have fun, whatever happens.

But how much fun can you have when the world’s never-ending contingent of poke-noses come along? Sure, when you are diagnosed with a lifelong condition you can expect to be prodded, probed, questioned and cross examined by the medical profession, that is, after all, part of their job but then there is everyone else. All the other people that want to know everything.

There’s the people who decide if you are going to get all the equipment you need, such a wheelchair or a hoist. What do you need them for? How often are you going to need them? When do you expect to be cured? How heavy are you? We just need to weigh you. And, how tall are you? Are you sure? You look taller. We just need to measure you. And what’s your waist measurement? How wide is your bottom? Do you know how long your thighs are from knee to hip? I’ll just get my tape measure. Non-stop but seemingly justifiable questions. They’re fine – annoying but fine. 

Then there are the people who decide if you are going to receive any financial help from the State. They send you forms which include page after page of questions which need a written response and documentary proof if you have it. How does your impairment affect you on a daily basis? Are you able to get washed and dressed on your own? Can you brush your hair? How about your teeth, do you deal with brushing them yourself? Can you manage your own medication? Do you cook your own meals or does someone else have to come in to help you? Can you eat without help? How about using the toilet or having shower, can you manage to do that? Again, legitimate questions, but it’s still not nice. When you are disabled you really should focus on the things you can still do, not the things you can’t. If you focus on those things, the way all the legitimate questions make you do, then it is just so depressing and soul-destroying. You start to wonder what the point of carrying on is and whether you are just a burden. Not healthy.

But, at least there’s a point, of sorts, for all of those questions, money equipment, treatment, all bearable and understandable. No, the questions I’m talking about, the questions you really don’t need are the questions you get from random passers by. The taxi-drivers who ask “So, what’s wrong with you?”, the busy-bodies who seem to think it’s their right to know. Well, it isn’t.

When you’re waiting at the bus-stop in your wheelchair, you don’t expect to be asked by a small child how you use a toilet. You don’t expect to be quizzed by a teenager about whether you can still have inter-course. You don’t need to be challenged by a pensioner about your finances and told you are a scrounger. And you really don’t need to be interrogated by someone you’ve never met before on why you haven’t killed yourself yet. What are you supposed to say to that one? I’m a bit busy to do it today? Not this week thanks? Maybe next month? 

What is it that makes people think it’s they have the right to ask me personal, intrusive questions if they are not a specialist or a professional? Well, in my opinion, it isn’t. Not everyone has the right to ask me anything. Sure, the medics do and the Welfare Benefits assessor does and the Social Care Provider does and the disability equipment specialists do but that’s it. No-one else need to know anything at all about me at all unless I choose to tell them. I have just the same right to privacy as a non-disabled person. What is it about being disabled that makes me public property? If you’re not in the need-to-know category I would urge you to consider once again what right you have to know intimate things about my impairment, my business, my private life. Before you ask me that burning question, ask yourself if you would like to be asked the same thing and if you really have a right to ask me. Once you’ve done that, if your answer is that you wouldn’t and you don’t, then stop, swallow it and walk away. It’s none of your business and I probably won’t like it either.

Sticky-beaks and poke-noses would you just butt out and leave me alone, I’ve had enough.

Oh goody!

Such fun!

The amazingly incompetent DWP strikes again!

Brief bit of background info – I am currently in the process of being transferred from the Disability Living Allowance I have been receiving since 1998 onto the new Personal Independence Payment. Around six weeks ago a kind and long-suffering friend helped me complete the frighteningly lengthy claim form, in excruciating detail, which I then returned, complete with copies of my Social Services and District Nurses Care Plans as evidence that I was not tell lies or over-egging the situation and my needs.

Well, yesterday I received a letter saying they were coming to see me to do a home visit and check that I really am as disabled as I said that I am and that I am really in need the help I say that I do.

Great!

No real problem with a personal visit and assessment except for the fact that it will be a colossal waste of both their, and my time.

First of all the appointment is for 9am-11am. Well, that’s not convenient. My carers come at 9.30am to wake me up, wash me down, attend to all my personal care needs, get me ready for the day and provide me with my breakfast. The assessor will just have to wait in the kitchen whilst I get my full body wash, have my catheter bag emptied and my incontinence pad changed. I’m not having them in my room to watch any of that.    

Secondly, my carers are here for around an hour for my morning visit, and can’t change their times as the have several other clients to see, so the assessor really will have to wait in the kitchen until they have finished everything they have to do.

Thirdly, in order to ensure that the assessors don’t, themselves, lie in their report ,about what they ask me and what I say to them (there are too many reports of this happening with other disabled people for me to take the risk), I will be recording the whole thing. The DWP allow this, if you inform them in advance that this is what will be happening, but it needs to be recorded on a double cassette or CD recorder so that I can keep one one copy and that they can take the other with them. No digital recording on a computer, tablet or laptop, no dictaphones, nothing modern, just an old fashioned cassette or cd recorder. Now, how many people still have one of those?

Not me.

Why am I going to have to go through this indignity yet again anyway? I fully understand the need to ensure that Welfare Benefits are going to the people that are actually entitled to them and need them. But really. Can’t the people at ATOS Healthcare read? I sent copies of my Care Plans for a reason – as proof that I am genuinely disabled. Are my Social Worker and my District Nurses really going to spend time detailing all the help I need if I didn’t actually need it? Is my Local Authority really going to be spending an inordinate amount for carers to come in to do everything for me on a daily basis or no reason? Somehow, I don’t think so.

The pen-pushing jobs-worths in the DWP need to learn to read and start employing some common sense, if, of course, they know what common-sense is. Disabled people, with genuine, documentary evidence of their impairments and the help they need just to exist, should not be hounded, day after day, to prove every little thing, in front of witnesses. It’s not right and it should not be happening. I am an emotionally strong woman but, even I am beginning to feel dispirited and depressed by the constant badgering. For other people all this disbelief and hounding and assessing and justifying themselves can be, and often is, the straw that broke the camel’s back.  

Employ some sense DWP, I beg you. If you ask us to send you medical evidence which proves our claims when we make them, do us the courtesy of actually reading the evidence we send you. You are looking for fraudulent claims so you can stop spending the taxpayer’s money on claims made by people who are not entitled to Welfare Benefits, so stop wasting our money going after people who really should and need to be getting that help and can prove it. What is this country coming to?

As I’ve said before, only this week, would you please just leave me alone. I, and so many other disabled people, have had enough. Learn to read and start checking the evidence you ask us to provide. Doctors and Consultants, social workers, District Nurses, Medical Professionals, don’t write these reports for their own amusement, they write them for a reason. Do them, and us, the courtesy of reading what these reports say and then start going after the reall fraudsters instead of us.

We’ve had enough.    

I think I’m supposed to be grateful.

I think all of us disabled, and older people are supposed to say ‘Thank you’ to the Chancellor, Philip Hammond, for his much flaunted, much hyped boost of £2bn for Social Care in yesterday’s Spring Budget.

Well then.

Here goes…

Thank you Mr Hammond, you are so beneficent and generous.

Sure, £2bn is an awful lot of money, and, with any luck it, at least some of should help ease the Care Crisis we currently have in this country, but it can only help if it actually filters down to the people it’s supposed to be helping. My major concern is that it will be shared out amongst all the Social Services Departments, nationwide, and will just vanish into their usual, annual Social Care black hole. We, the older and disabled people who are the ones who are supposed to reap the benefit will probably get to see little, if any, of it at all.

As someone who is in receipt of Social Care, there I three places I can think of straight off where that £2bn could make a real difference if it was spent properly.

First of all, I would like to see the money being put towards ending the farce of the fifteen minute care-call. How can anyone in their right mind think that fifteen minutes is long enough to provide any form of meaningful care for a disabled or older person? It’s barely long enough to make a sandwich or boil a kettle for a cup of tea, let alone help a frail person access the toilet, get them dressed or undressed, make sure they’re comfortable and safe, cook a light meal and help them eat it, if they need help, make a bed and do a little light housework.

Some of Mr Hammond’s £2bn definitely needs to go towards this.

Secondly, the paltry amount Home Care workers get paid needs to be addressed.

When I was in receipt of Agency Care, via my Local Authority, the workers were receiving little more than the minimum wage, indeed, in some instances it seemed as if they were even getting less than that. I now get my care through a scheme called ‘Direct Payments’ whereby my Local Authority pays the amount they would have spent on Agency Care directly to me and I get to employ and pay for my own carers. In theory, this is a great plan and, for many, it works well but it is impossible to offer a decent wage for the work that needs to be done and therefore, get the most suitable carers. The amount I get, for example, allows me to offer an hourly rate of just £9.40, before tax and NI, hardly a fortune, especially when you consider the level of personal care I am expecting those workers to undertake.  I would dearly like to be able to offer more but, as someone with no private income whatsoever to fall back on apart from my Welfare Benefits, I am stuck with just the funding my Social Services Department allows me every month for my long-suffering and excellent carers. Hardly enough at all.

Some of Mr Hammond’s £2bn needs to go towards this.

Then thirdly, there’s something which doesn’t affect me personally as yet. The amount that is available for both short, and long-term, residential Care Home accommodation. How can we expect older and disabled people to receive good quality, dedicated care when they need intesive care or can no longer live in their own home, if the amount Residential Homes are given for each resident’s care package is so small? We can’t

Some of Mr Hammond’s £2bn needs to go towards this.

What I really want to see most after yesterday’s display of Governmental generosity would be a completely new Care Strategy for our country. There needs to be meaningful consultation with the Care providers, the medical profession and carers themselves, both Home Care and Care Home agencies and workers and the Care Recipients, namely all the older and disabled people who need help to live in comfort and with dignity. We need to be assured that any extra or new funding is being spent wisely and well and is contributing towards the wellbeing of those who need it most.  

Some of Mr Hammond’s £2bn definitely needs to go towards this.

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…

I am absolutely furious with my Housing Association, London and Quadrant Housing Trust.

I have been a tenant of theirs for almost 30 years now and they KNOW about my impairment and the fact that I am now restricted to bed 24/7. It’s on my record. Yet the way I have been treated by their employees today has been disgusting.

Let me explain.

This morning, when my carer arrived, we discovered that there was no hot water in the tank and that the heating was off. Once my carer had managed to deal with everything that needed doing – she had to boil a kettle so she could help me wash – I set about ringing to get someone round to deal with the situation.

And that is when my problems really started.

The first thing that happened was that I encountered a recorded message on the direct dial maintenance line phone. It informed me that, as it was the weekend, the Maintenance Department was now closed until Monday morning and that I should phone back then, during office hours. Not good. A long weekend of freezing to death loomed large. No thanks!

Nothing daunted I decided to search online until I could find another number with a human being to talk to at the other end of the line as I was certain there must be an Emergency, 24 hour number I could call listed somewhere. Sure enough, I eventually managed to find one for the L&Q Head Office and, when I rang that, I was immediately put through to their Emergency Maintenance Department. It was now around 11.30 am.  

The woman I spoke to took my details and, once I’d explained about being severely disabled and restricted to bed, said that she would call the boiler engineering firm they used and that someone would be round before 4pm. Sorted. Re-assured that everything would get dealt with relatively quickly, I settled back to wait for a knock on the door and the promise of warmth once more.

But, even though the minutes and hours ticked slowly and icily past, nothing happened.

Nothing at all.

Finally, at about 4.45pm, fed up and freezing, I rang the same number I’d found this morning once more. This time I got a different receptionist who, once she had taken my details, looked me up on her computer and told me there was no record of my call from this morning noted at all! Not a word. As a result, no engineers had been contacted and no-one was coming.

Yet again I explained the situation and my circumstances and the fact I was freezing and that’s when she said something that infuriated me. Despite the fact I had told her, only minutes beforehand, that I was restricted to bed due to my impairment and unable to get up or walk or go out at all she told me there was nothing she could do before Monday and that, if I was cold, I should go out, buy a heater and boil a kettle if I needed hot water.

Just what part of ‘Paralysed’, ‘Restricted to bed’, ‘Severely disabled’ and ‘Unable to walk or to move about’ is so difficult to understand?

After huffing and puffing and coming very close to bursting into tears of frustration I went through it all again and, finally, she said she’d phone the engineers and ask them to ring me and tell me when they’d be round.

And then she hung up on me!

Four hours later, engineers conspicuous by their absence, I have just finished my third call of the day to the, so-called, Emergency Maintenance Line and, yet again, I have been promised that someone will be out tonight and that I will be getting a call from the Engineers themselves to tell me when the visit will be.

It’s not looking promising and I am disgusted by the way I have been treated. If nothing hapens soon I have a pretty good idea what I’ll be doing tomorrow, and it won’t be shivering silently in a corner. 

London and Quadrant maybe a Social Housing firm but, as I’ve learnt today, if you’re severely disabled and have an urgent issue that needs fixing, ‘Don’t hold your breath’.