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Assessments

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 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…

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.

This morning has been interesting. I have been asked if I could write something about how the British Welfare Benefits system does not take into account the needs and difficulties experienced by disabled people with a medical condition where the effects of the condition fluctuate, so, here goes!

I have Multiple Sclerosis. I am now quite advanced with the condition, being restricted to my bed most of the time, unable to walk, move or do anything for myself so the restrictions I have are pretty obvious but, and it’s a big but, I have very clear memories of my battles with the system and when I was still able to go out to work.

The main problem, as far as I am concerned, is the system’s inability to be able to cope with people whose condition means that the effects fluctuate. DWP forms and rules seem to like people with conditions that are cut and dried, where nothing really changes day to day. But for many of us, people with MS or ME for example, life is not that simple. People who find that what they can do today is not the same as what they could do yesterday or what they might be able to do tomorrow. And this fluctuation can be on an hourly basis, never mind a daily basis. Someone with a fluctuating condition might be able to do whatever you wanted this morning but this afternoon? No chance.

For me, the main effect of my MS that was not understood, was my fatigue. DWP advisers and employers and many other people seemed to think that MS related fatigue and sleepiness were synonymous with one another. Let me tell you, they are not. Sleepiness can be cured by a nap, fatigue cannot. When I am fatigued due to my MS I can’t move, I can’t concentrate, I can’t think, I can’t really do anything much until it wears off. And how long that will take is anyone’s guess. For someone with  fluctuating condition life can be a daily lottery where we have no real idea of how things will pan out. We have good days and bad days and kind of OK but not brilliant days.

And that’s the bit Welfare Benefit forms and Benefits Assessors can’t cope with. They want people to be able to answer cut and dried questions about their capabilities but, what they don’t seem to be able to understand, is that when it comes to people with fluctuating conditions, we can’t. Questions such as ‘Can you lift and move a carton of milk’ are demanding a ‘yes’ or ‘no’ answer. Either you can or you can’t. There is no provision for ‘maybe, it depends on my fatigue levels’. Before my MS got so much worse I had ‘I can’ days, ‘I can’t’ days and ‘I’m not promising anything but I’ll try’ days. On a good day I had no trouble lifting and moving little things. On a bad day I could barely lift my arms, let alone anything else. On a ‘maybe’ day, it was a hit or miss experiment. If you had caught me at the right moment, shifting that milk carton and making a hot drink would have been no problem whatsoever but, if the fatigue had hit, you would have been much more likely to get a puddle on the floor when I dropped the carton than a cuppa. If I was having a fatigue ridden day my arms would be aching and unresponsive, I would have cloudy or double vision and I would have been practically incapable of concentrating on anything for more than a few minutes. And there’s your difficulty. What the DWP seem unable to cope with is when assessing people with fluctuating conditions is that these days don’t follow a set pattern.

If I were to be asked what might make things better for people with fluctuating conditions then I would suggest that the DWP should pay far more attention to what a benefit applicant’s consultants, specialists and medical experts say in their reports. They are the people that know us and, in some cases, have been treating us for years. Benefit Assessors often have little or no medical expertise whatsoever yet they are the people who are being expected to rule on complex conditions they don’t really understand. This is what needs to change. This is what the DWP and the Government doesn’t seem to understand. People with fluctuating conditions don’t fit neatly into officialdom’s neat little boxes and pigeonholes. Trying to get help and support shouldn’t be a lottery. The stress caused by continually having to explain yourself and how your impairment affects you can often make things worse. Reassess the system, not the people who use it and maybe, just maybe, things will get better for all of us.