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Dignity

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.

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…

Yesterday, I read a letter in the London Evening Standard, written by a friend of mine, concerning the on-going Brexit Saga. In this letter she refered to Brexiteers as ‘Brexit Bullies’ and how Brexit as being cited as the alleged ‘will of the British people’.

According to our Prime Minister, Theresa May, 65 million members of the British public support it. 

Well, as far as I am conerned this is not true.

This is very obviously untrue.

It is another Brexiteer fabrication

Brexit is not the ‘will of the people’. Simple maths shows how, yet again, we are being lied to.

Just looking at the published referendum voting figures, 72.2 per cent of registered voters cast a vote in the EU Referendum. This equates to 33.6 million voters. Of those 33.6 million people, only 52% voted for leave whilst 48% voted remain. 52% of 33.6 million voters equates to only around 15 million people who voted to leave the EU, not the fanciful 65 million people Mrs May is relying on.

So exactly where do her missing 50 million members of the British Public come from? Could she be trying to include the people who will  be the most affected by this decision, namely our children and young people, who never had a vote at all? If you listen to these very astute youngsters, they are largely in favour of remaining within the EU rather than leaving. As far as I am concerned, this is just another instance of adults saying ‘Don’t worry, we know best. We’ll decide for you’ without actually listening to what these people actually want.  

I am fed up with the people that my friend refered to as the ‘Brexit Bullies’ and the bully in chief, Theresa May, feeding us misinformation and lies to further their own cause. When will the Brexiteers finally admit that they are, yet again, bending the truth to suit their own agenda and, ultimately, do what they usually do and line their own pockets.  

When will ‘Remain’ politicians start to challenge the inaccurate figures that are being cited? When will people wake up and start fighting? When will the British Public shout out, ‘But this is not what we voted for’? These are our children’s and grandchildren’s futures they are playing with and we cannot allow it to continue. Britain is just a very little island in a very large world, not the leader of the massive Victorian trading empire we once were. We no longer have the influence we used to have and we are unlikely to ever have it again no matter how much some people want and believe it to be so. People are looking at the past through rose-tinted glasses and are seeing things that are no longer the case. We need to stop listening to the lies of the Brexit Bullies and letting them ruin our futures. If you think things are bad now, just wait and see how fast things will deteriorate if we allow Brexit to go ahead.

For the sake of our children and their children and their children and all of the generations to come, we must end this madness now, before it is too late.

Brexit Bullies begone and stop making things up to suit your own agenda, whatever that might be.

You have lied to us time and time again and we have had enough.

Just stop, it’s not too late if you act now and say ‘No more’. Listen to what we’re saying and end all the fanciful fabrication now, we are, at last, begining to see through all the lies to the disaster that is to come if you don’t pull back, now.

Yesterday, there was an article in one of the more respected daily newspapers which stated that a survey in America had identified six medical conditions which had been rated, by hospitalised patients, as worse than death.

Really?

Worse than death?

Had any of the respondents to the survey actually experienced any of these conditions long term so they could make an informed decision or were they just guessing? Almost certainly not. I think that most people were, in fact, guessing.

I took a look at the list and, of the six conditions listed, I have experienced four of them and have lived with two on a daily basis for several years. Let me tell you guys, I reckon death would be far worse. Sure, these conditions are all things that can make life harder, a lot harder, but death would definitely be worse.

Death is not something you can learn to live with.

Death is not something you can get better from.

With death, you don’t get another try.

Death is the very end.

Finito.

I think the major problem we have here is fear. Fear of the unknown. For a start, all the people who took part in the survey were hospital in-patients. They were all people who were probably scared and worried and ill. According to the article, they were people with long-term conditions such as malignant cancer and heart failure. These were people who were scared and frightened by what was already happening to them, then they were given a list of other conditions and asked if a diagnosis with any of these would tip them over the edge. These people were sick and at a cross-roads, they were presented with a list of nasties and asked if they had a choice between them and death which would they chose.

Well, that’s not fair.

In those circumstances it is hardly surprising that death won. These people would have heard of all of these conditions, and may even know others who have experienced them, but they would have already been scared so asking a question like this, at that time, was wrong. Sure, the conditions listed are horrible and, for someone with no prior experience of a long-term, life changing medical condition, scarey, but, if these conditions are well managed and people receive proper treatment and care, there is not nearly as much to be scared of as you might think. Having to deal with any of the conditions listed can be difficult and, in some instances, unpleasant but, in my opinion, death would be worse. Furthermore, as this survey was conducted in the USA where people don’t have access to free, NHS care and participants would have to pay for treatment and care, this could have coloured their responses. Taking that into account however, of the six listed there is only one, ‘being confused all the time’ which actually would scare me. Even then, I’m still not sure if I would chose death as the way out. The others are, as far as I am concerned, all copable with. In fact, I have friends and acquaintances who do cope with them on a daily basis and they all have rounded and fulfilling lives. They are not sitting back longing for the Grim Reaper to call, they are out having fun and enjoying themselves.

I think this article is another attempt at promoting the thorny issue of Assisted Suicide. Running a story about what happens in another country is not right unless it emphasises the fact that it is another country and that things are different there. I’m not saying that people don’t have a right to choose, they do, but they need to know death is not the only choice available and what the situation is here. Sure, people should be able to go for the death option if that’s what they really want but they need to be given full, accurate information about other options available to them so they can make an informed choice and that doesn’t always happen and it should.

I hope that the newspaper in question runs another story about Britain in what happens here but I’m not expecting miracles. Balanced reporting would be nice for once but it probably won’t happen.