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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 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’ve been pondering.

Dangerous, I know, but the Daily Politics Show and the lunchtime news has got me thinking. Again.

And, today’s muse has led to me wonder what will be my, and our nation’s, enduring memory of our current Conservative Government.

What will we remember in the years to come.

What will be their legacy.

Good, bad or indifferent, what have Mrs May and her compatriots done that will stay with me past the end of her tenure in Number 10? What have they done which will leave lasting impression?

And I have just realised what I think it is.

Crisis after crisis. A never-ending stream of crises. My life, the lives of my friends and family, the lives of so many people in this country, appear to be doing little more than lurching from one crisis to the next. And the Government and its policies are largely the cause of this.

I know that we are in the midst of seismic political change in this country, with last year’s Referendum and the imminent triggering of Article 50, and that will crtauinly be unforgetable, but I don’t think that’s what I am likely to remember the most. I think the thing I will remember is the never ending series of crises we appear to be having. Day after day, week after week, month after month.

We currently have a major crisis in the NHS, due to a lack of funding, and our hospitals are struggling to deliver the medical treatment we all need.

We currently have a crisis in Social Care, due to lack of funding, and our Local Authorities are struggling to ensure that our disabled and older people receive the care in their own homes they need to live the independent and stress free life we all deserve.

We currently have a crisis in our education system, due to a lack of funding, thanks to a teacher supply shortage, unmanageable workloads and serious underfunding placing an insurmountable pressure on teaching staff in schools and colleges

We are now told we have a crisis within our Police Service, diue to a lack of funding, where forces nationwide are having difficulty recruiting and retaining detectives, which is harming response times and there has been an erosion in neighbourhood policing.

And what is it that all these crises have in common?

Funding, or rather, a lack of it.

Our health service is underfunded. Our Social Care Services are underfunded. Our Police Force is underfunded. Our Education System is underfunded. Underfunding seems to be the cause of crisis after crisis and this serious lack of money across the board will mean, in reality, that things can only get worse. Our services cannot continue to be run on a negative bank balance. Things need to change and they need to change fast. I’m not an economist, a financial whizz-kid or a politician but, even I can see that more money needs to be found, from somewhere, and it needs to be found soon if we are to avert a cataclysmic crash. And, finding that money, may be the greatest legacy this Government could leave both us and the generations to come.

There must be a way we can be led back from the brink of disaster and, as far as I am concerned, it’s up to Mrs May and her cohorts to do it if this plethora of problems is not going to overwhelm us and ruin our lives, and the state of our nation, for generations to come.

Finding the solution to all these crises would be the greatest legacy this Government could leave. We can only hope they find that solution soon, before it’s too late. .  

Sorry. I am more than just a little bit angry.

Yesterday, as I usually do, I switched over to my daily dose of ‘Daily Politics’ on BBC2 at lunchtime and saw something that made me fume.

The programme started off with it’s usual collection of serious stories such as John Major’s speech about leaving the EU, rebels in the House of Lords and a variety of other Brexit related topics but, at the end of the program, and probably as a form of light relief, they showed the annual Parliamentary pancake race. MPs and Lords -v- journalists, ‘sprinting’ round a marked course, in the pretty little park by the Thames, whilst trying to toss cold and inedible pancakes.

Nothing of national importance, just a bit of fun.

Well, it was until they did an interview with one of the winning team of politicians. And it was that which made me fume as I munched my midday meal. My anger was directed towards one of the successful team of Tory MPs.

I can’t remember his name but, what he said, infuriated me.

When the presenter asked him why he had taken part in the race, the MP laughed and said that it was just a bit of fun but, it had a serious side too and helped raise money for charity. He was then asked which charity and he said ‘Rehab’.

Now, it’s not the Charity I have a problem with. Rehab do great work and, like so many other charities, needs whatever money it can get. That’s not it, that was not the problem. No, it’s what this politician said next that made me so angry. He gave a little laugh and then said “It’s a bit of a laugh and it’s good to be supporting a charity that is looking to help promote independent living for disabled people”.

And that was the point my cage was well and truly rattled.

How dare he say this only a day after ‘Personal Independence Payments’, the most important Welfare Benefit for thousands of disabled people, was cut for new claimants by HIS party. And this isn’t the first cut or major change either, it is just the latest of many. Employment Support Allowance has been severely restricted, Attendance Allowance is under threat. Unfair PIP assessments have lead to disabled people losing their cars or being denied benefits entirely. The Independent Living Fund has been axed. Cuts to the Access to Work scheme are imminent. The financial assaults by this Government on the independence of people who who are sick and disabled, through no fault of their own, has been neverending.

And then we get idiots like this politician almost rubbing it in.    

If he really cared about helping disabled people gain independence then maybe he should have done something concrete to actually help and voted against this move instead of just running around a square, flipping pancakes, badly. Maybe he should actually look at the harm his Party’s policies have done. Disabled people have lost so much as a result of the never ending assaults on our hard-fought for allowances and benefits. People have been restricted to their homes because of these cuts. People have lost their jobs because of these cuts. People have lost their vehicles because of these cuts meaning they have lost independent access to local shops, their GP’s surgeries, life-saving hospitals and vital leisure activities. People have lost their homes. People have actually died and he doesn’t even seem to care.

Here’s an idea for you, oh unknown Tory Politician. If you really want to support disabled people and help us gain our independence why don’t you try opposing proposals to cut our support instead of waving it through on the nod. Pancake racing may be fun and result in a great photo-opportunity for you but it actually doesn’t help us. It may raise a bit of cash for charity but cash for our benefits could do so much more for us. Try cutting the cuts and see what that does for our independence, you might be surprised.

Flipping your pancake, running in the park and posing in your shorts and T-shirt on TV won’t really change anything for us but flipping your support for punishing policies and opposing even more cuts just might.

So. Today is voting day for the Referendum which means I have had to get up. I don’t do getting up every day but today is too important not to so I am now sitting in my wheelchair and I’m not entirely happy about it.

For those of you that don’t know me or my situation, let me explain.

I should start by saying that, for me, the wheelchair scenario is nothing new. I have been a full-time wheelchair user for nearly twenty years now so you’d think I should be used to it by now, and in most ways, I guess I am. But, over the past two years, things have changed dramatically. My impairment has deteriorated markedly and, because of this, I now spend most of my time in a hospital type bed in my living room. I get up a mere three or four times in a month to go out but bed is where you will normally find me. I would love to be able to get up more often, most of the time if I’m honest, but, thanks to my rotten, horrible, massively uncomfortable NHS wheelchair, I can’t.

Before things deteriorated I used to be pretty active. Not a bouncey, run-around, exercisey sort of active lifestyle of course, my MS didn’t let me do that, but a busy, non stop, very fulfilling, sort of active lifestyle nonetheless. What you would expect for a woman in their late forties, early fifties to be honest. I worked full time, went out with my friends a lot, traipsed off into town on shopping trips when I felt like it, went to the pictures and the theatre with my family occasionally, had fun, had a life. And to enable this life to happen, I had a pretty decent wheelchair which I obtained through a scheme called Access to Work. This is a Government funded scheme which allows disabled people to obtain the help and equipment they need to get on a level playing field with their non-disabled colleagues. My wheelchair didn’t do everything of course but it did all the things I needed it to do to allow me be comfortable and busy at the same time. I could recline the back, raise and lower my feet at the touch of a button, tilt the whole chair so I could relax when I wanted to and it had enough battery power to allow me to go where I wanted, when I wanted without the risk of grinding to an undignified halt. When I became too sick to work any more I had owned it for around five years and I had also owned a similar chair for about five years before that so I was used to it and what it did. There was one other thing I loved about it – it was easy to drive and so was so maneuverable that I could get on and off buses, or into cabs if I wanted to, without a problem. I was used to it, I loved it and I was happy and comfortable with the freedom it gave me. It was an integral part of me. But it was old and clunky and squeaky and bits were falling off it. It wa coming to the end of it’s active life and it needed to be replaced. That would have been fine if I had still been in work, I could have just got another chair through Access to Work, but I’d had to give up work when I got sicker so I was no longer eligible and I couldn’t afford to buy one privately. Decent wheelchairs are far too expensive. I now have to rely on the good old NHS for my equipment.

I fully understand that the NHS is publicly funded and so has to show it is value for money and not frittering public money away but does that have to mean that, whilst the equipment it provides for disabled people is functional, it is not what that disabled person really needs. It may have to be as inexpensive as possible, but that does not necessarily mean it is entirely fit for purpose. The cheapest option is not always the best, the most efficient or the most cost effective. Having a wheelchair that gets me around but which causes extreme discomfort and pain is not a great idea really. It means that I am more likely to need to see my GP o the District Nurse more often, that I need to have home care workers and support staff attend in my home more often and that I am reliant on other people for almost everything I want. And that has a cost too. With this, cheaper chair I am not getting to go out and about  as much as I once did. I’m not not able to volunteer at my local disability organisation any more, I’m not able to use local facilities like the library or neighbourhood shops as much as I once did. My quality of life has diminished. I can’t go to the doctor on my own or pick up prescriptions from the chemist if I need to, they have to come to me. I’m not able to even think about getting a part-time job to boost my meagre income and pay my taxes. I have become a drain on the system, I am unable to contribute.

Why can’t things be looked at in the round and not separately through their individual elements? Why can’t cause and effect be taken into account? Why is money and cost always the primary concern when looking at the needs of disabled people rather than what might be the most beneficial and cater for that person’s needs the best? Surely spending a little bit more now, if that would mean spending a lot less later would be more sensible. Maybe one day I will be able to have a wheelchair which will take into account all my needs rather than just giving me the one that is the least expensive. I want something that will allow me to be the real me again not just a shadow of the me I used to be because it’s cheaper. We only have one chance at life so give me, and all the other disabled people in the country having to use the cheapest option available, the tools we need to take that chance rather than always looking for a way to pennypinch and cut corners. The cheapest option is not always the best option and short-term pain will not always lead to long term gain. We all should have the right to live and not just exist and I would like to have the chance to have that right too.

Last week I had one of my regular long chats with my wonderful father and, as it often does, what he said got me thinking. Why don’t more older and disabled people know about all the things they are entitled to from the State and that they deserve to receive? How many lives could be improved and made easier if people just knew what’s out there to help them? Welfare benefits, home helps, aids and appliances, it’s all there and available but people often don’t know about it or don’t realise it applies to them and their own particular circumstances.

My father and my Step-Mother are a case in point. They are now in their 80s and their health is not as good as it once was. They both have trouble walking any distance due to disablin medical conditions and in doing all the things they used to delight in. They have had to slow down and do less than they used to. But, with the right help and support, they can still do what they want, when they want to do it. They can go on leading the happy, enjoyable, fulfilled lives they always have done and, more importantly, be able to continue to do so for many years to come.  

A couple of years ago I realised that neither of them knew about one of the main Welfare Benefits they were entitled to and, in my opinion, should have been receiving for several years, namely Attendance Allowance. No-one had ever told them about it, let alone mentioned it, even in passing. Attendance Allowance is a payment made to older people who need a little bit of extra help due to the restrictions placed on them, not only because of their age but also if they have any disabling medical conditions as well. They can, of course, use the money how they want but most people use it to pay for some kind of home care or for aids and adaptations within their homes to make life easier. It’s not a huge amount but it’s regular and it can help. I told my father and Step-mother about this benefit, they both applied and were awarded it. And what a difference it has made for them. My father has been able to buy himself a motorised scooter which has given him the freedom and independence to go out and do what he wants in the small seaside town where he lives. My Step-mother has been able to pay for a cleaner to come in once a fortnight to deal with the more awkward elements of housework that needed doing and that she was no longer able to tackle as easily as she once was. As far as I am concerned, this is exactly what the benefit is for, to give two older people who have worked hard all their lives the freedom and ability to remain in their own home rather than having to consider selling the house they love and have lived in for so many years and moving into sheltered accommodation or a care home.

But why did it take me to tell them about it? If it wasn’t for the fact that I have worked for charities for older and disabled people, giving advice and information on benefits, for many years they might never have found out what they could get. Why didn’t someone else such as their GP or their medical specialists give them the information. People find out about the help they may be able to get despite the system and not because of it.

Today I have seen reports about £12bn in unclaimed benefits. I wonder why. Could it be because people don’t know or understand what they are entitled to? There must be a way of ensuring that more people find out what there is out there for them and giving them the help they may need with applying for those things. Maybe, instead of having work coaches and employment advisers in doctor’s surgeries it would be better and more efficient to have benefits advisers there instead. Professionals who could help patients understand what they could get and, more importantly in my view, assist with the complicated application process. After all, if people were in receipt of the all the help they are entitled to then they may not need to visit their doctor so often and could stay out of hospitals and needing expensive and invasive social care help for longer. It might cost a little more to do this but there would be savings down the line in other areas as a result. Consider the picture as a whole and not the individual elements in isolation. Give people an easy understanding of what they are entitled to, help them apply and get rid of the hurdles stopping people from getting it. It makes sense in the long term.