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Carers

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.

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I don’t want to sound rude, resentful and ungrateful but I am getting completely fed up with the loss of dignity, privacy, autonomy and spontaneity that goes along with being a disabled person, reliant on homecare and personal assistants for my every need. It’s horrible and I hate it so much. I would give so much to be able to have a lie-in because I feel like it, not think about what I’m going to have for my lunch until I’m actually hungry, do something without having to plan it days in advance and have a wash and get dressed without an audience, but I can’t. Just for once, I’d like to be able to be left alone and to chose to do things, because I want to do them, without anyone else being involved, but it’s not going to happen.

After a year of frustration, with agency staff looking after me, I now have a team of lovely carers, whom I employ myself, who come in three times a day, and they do everything for me. Which, don’t get me wrong, is nice, but, just for once, I’d like them, if to were possible, to just go away and leave me alone. They come into the house first thing in the morning, often when I am still asleep, and wake me up, even if I don’t want to be awake. They bustle around, opening and shutting doors, making idle small-talk and turning on the lights. They go to the bathroom, get a big bowl full of water and then strip the bedclothes and my pyjamas off me, wash me and give me a bed-bath. Whilst they do this, and whilst I am still half asleep, trying desperately to get back into the lovely dream I was having only minutes before they came, they ask me what I want for my breakfast and for my lunch and then one of them goes to fetch it. I’m hardly fit for anything before I’ve had my morning coffee but I have to go through the morning routine every day before I even get a glass of water. Forty-five minutes of frenzied activity every morning and then, just a quickly as it started,  I’m on my own until it all happens in reverse in the evening when they come to get me ready for bed. And this is my life. No frivolous conversation about what was on the TV last night, no questions about what I did the day before, no talk about what I’m going to be doing next month or next year, or my plans for the future, just the same thing, day in, day out. No variation. Well, I am completely fed up with being poked, prodded, turned, talked to, flustered and disturbed all the time. I would like to be able to wake up when I want to wake up because I feel like it, have a wash in a bathroom with the door closed, without an audience, change my mind about what I’m going to wear when I’m halfway through getting dressed because I don’t want to wear whatever I got out of the wardrobe after all. I want to be able to go to the kitchen and choose what I want to eat for my breakfast by looking in the cupboards to see what’s there rather than having to choose from the supermarket delivery note. I want to get to look out of the window and THEN decide if I’m going out or staying in rather than make all my plans for the day in advance. I want to be able to do what most people do and live a ‘normal’ life. I want to make simple, little decisions about my life, on my own, without comment, but I can’t. Don’t get me wrong, I really do appreciate the dedication of all the people who help me on a day-to-day basis but, just for once, I want it to be like the old days.

Having the autonomy to do my own thing was never something I truly appreciated when I had it but, now that I don’t, I really want it back. Being able to do something spontaneously was never something I really thought about but now I can’t be spontaneous I really miss it. In the past I have just gone to the station and caught a train to the other side of the country because I felt like it, now I can’t even change my mind about my sandwich filling without having to ask someone else to deal with it for me. Privacy when it came to being seen naked or in my underwear was never something that really bothered me. Changing rooms in clothing stores and leisure centres didn’t bother me and if someone wanted to look at me or stare then so be it. Once you have given birth, with an audience of doctors, nurses and midwives, you get to realise your body is not really your own. Even so, that was years ago and I thought it was something I could put behind me but no, it’s back and it’s not likely to go away now.

I so wish I could just be me again and have my old life back but, unless someone makes a medical breakthrough and finds a cure for me, I’m going to face the fact it’s not going to happen. I am just going to have to grit my teeth and get used to being the new me. It’s not the life I envisaged for myself when I was younger or the life I would have chosen but it is the life I’ve now got. Spontaneity, privacy and dignity as I knew them are now for other people, not for me. My life is now different and there are many other people who are involved in it so, I suppose, I had better knuckle down and get on with it.

Roll-on the future, let’s see what happens next.

I had such a lovely time last week. I got to be a grown-up, which doesn’t happen very often, and it was so wonderful!

Confused? Let me explain.

As a severely disabled person there are many things I cannot do for myself. I can’t walk. I can’t get dressed by myself. I can’t wash myself. I can’t make a meal. I can’t even make myself a cup of tea if I want one. I have to rely on someone else to do everything for me.

Now, before my medical condition deteriorated slowly and inexorably in 2014, I was perfectly capable of doing all that needed to be done either on my own or, if necessary, with the assistance of my, now adult, children. I went out to work full-time during the week, looked after my own family, visited friends in the evening, was a lady who lunched at the weekend, attended social events as and when I wanted to, did my own shopping, stayed up late if I felt like it, had a lie-in at the weekend and got to go away on short breaks if I fancied it. In other words, I had a lifestyle that was comparable with the lifestyles of my peers and the majority of the adult population of this country and most of the rest of the world. I was an adult who got to pick and choose what I wanted to do and I did adult things. In my family we call that adulting. I spent my life adulting.   

Then I got sicker and things changed. The Multiple Sclerosis which has been part of my life for the past thirty years decided it was going to throw a spanner in the works and deteriorate. I wound up in hospital and, although I am a lot better than I was, things have had to change. For the last eighteen months, this has meant that I have had to have carers, or, as many disabled people prefer to call them, Personal Assistants. PAs. PAs coming into my home to attend to just about everything I need, every single day. Quite hard to come to terms with for an independent woman such as myself but I don’t have an option. It is either PAs in my own house or live in residential accommodation away from my family with no independence whatsoever. No choice really, so PAs it has to be.

And that’s the issue. For most of those eighteen months my PAs have come through an agency, paid for by Social Services. I have had little or no control over the care that I receive. I have not been able to say what I wanted done, when I wanted it done or how I wanted it done. I have had no choice at all. My ‘ladies’, as we call them, show up every morning at 9am to wash me and get me ready for the day, make me breakfast and do a small amount of simple housework if they have the time. I have two ladies, for forty-five minutes each, to do everything. At lunchtime I get thirty minutes care from two more ladies when they make me something to eat and get me another cuppa and then, in the evening, another two ladies come at the horrifyingly late hour of 7pm, for forty five minutes each, to get me ready for the night and, if my children are out, warm up a ready meal for my supper. And that, until recently, was it. With a little careful negotiation I was able to make bedtime as late as, shock, horror, 8.30pm but only once a month, if I was lucky, as a special treat. Then about two months ago, I managed to get onto something called Direct Payments whereby Social Services give the money they are prepared to spend on my care package to me and I get to employ my own PAs to come when I want, and do what I want, and everything I feel is necessary, at a time that suits me.

And I am loving it!

I have got my life back! I get to choose who comes, when they come and what they do when they are here. I don’t get to choose how long they are here for, Social Services still dictate how much time I get, but not when that time has to be. And this means that, if I want to stay out past around six-thirty in the evening, I can!

So, last Thursday, I did! I went out with some friends, to the pub, for food, alcohol, conversation and fun and I didn’t have to get home for my evening care visit until the startlingly late hour, for me anyway, of ten-thirty. No watch-checking, no worrying, no rushing, no leaving the party long before the end, no having to act like a small child or a teenager with a curfew. I got to do some adulting again and I loved it. I have not enjoyed myself quite so much in a very long time.

And, now that I have discovered that life can be fun again, I want more. Adulting, in future, will have to have a much greater role in my life. I already have my next night out planned and I’ve only got a couple of weeks to go. After eighteen months of being treated like a very small child I can wait. But not for long.

Life is for living and I want to do some more.  

Long live adulting.  

I am somewhat concerned that disabled people are in the process of shooting themselves in the foot.

Amongst all the comments and posts about David Cameron’s tax affairs and the Panama Papers on social media at present, there are also questions being asked about the fact that the Camerons claimed disability benefits on behalf of  their disabled son whilst he was still alive. The argument seems simple – should the Camerons have claimed Disability Living Allowance (DLA) for Ivan given the fact that they are a very wealthy family and had no need for the money or, was the act of claiming this benefit, fraudulent.

Simple question here, how?

The definition of fraud is wrongful or criminal deception intended to result in financial or personal gain. In what way was claiming a benefit, that Ivan was perfectly entitled to receive, wrongful or criminal deception?

It wasn’t. Therefore, in no way, can this be considered to be fraud. There might be some validity in a question being asked about the morality of a wealthy family receiving a welfare benefit but there can be no question at all asked about the legality of the claim. The Camerons were perfectly entitled to receive DLA on behalf of Ivan. He was a disabled child, the families of all disabled children were entitled to claim DLA on their behalf so the Camerons were entitled to the money they received.

I have no issue with that whatsoever.

Moreover, what they did with that money was their business and not ours. Did they spend it on Ivan or did it go straight into the family coffers? We don’t know. It could be argued that the money should have been put aside, into a trust or bank account for Ivan for when he was older, but again, why? We have no right to ask that question. If the Camerons were a poorer family, living on benefits, in social housing, needing to use a foodbank,  would we be saying the same thing?

Let’s be honest here. No we wouldn’t..

And that is tthe issue and the nub of my point. The Camerons received DLA on  Ivan’s behalf because he was disabled, not because of the amount of money the family did or did not have.

DLA – is a non-means tested benefit which is paid to a disabled person to compensate them, in part, for the extra costs they will experience because of their impairment and, in the case of disabled child, to help the parents with those extra costs. For some people and families it is more necessary to have this money than it is for others but everyone who is disabled is entitled to receive the money. Rich and poor alike.

Asking if David Cameron defrauded the benefits system by claiming DLA for his son is wrong. How could he have defrauded the system if his disabled son was receiving money, that every disabled person is entitled to receive, because of his impairment. We need to be so careful here, it almost sounds like we are asking for DLA and, nowadays, its successor, PIP, to be means tested. If we are asking if it was wrong for the Camerons to have received DLA for Ivan because they are a super-wealthy family, are we also saying that everyone who receives PIP or DLA, but also has income from another source, should not receive anything either? Are we saying that that is wrong too? We need to be very careful we don’t start, however inadvertently, saying that DLA/PIP should be means tested by questioning if David Cameron had a genuine need for Ivan’s DLA. You could argue, effectively, that of course he didn’t, but Ivan was still entitled to that money. If he were still alive, would we all be saying he should not receive DLA because his family is rich? I would hope not, because, if we did say that, we would be arguing in favour of means testing for PIP and I don’t think any of us want that. After all, does a disabled person who receives DLA/PIP, and who also works in a well paid job, have a genuine need for the benefit? Depending on how much they earn they almost certainly have enough for everything they need without any State help whatsoever but why should they? A disabled person does not ask for their impairment so, should they be penalised because of it? Of course not. Yet, by saying that David Cameron was claiming DLA fraudulently on Ivan’s behalf, that is exactly what we are doing.

Whatever else we think of him, his Party and his politics we must not allow this to colour our views by saying one rule for him and another for everyone else. His family’s tax affairs may be questionable in the extreme but there is no doubt that Ivan was a disabled person and that, as such, his family was therefore fully entitled to claim benefits on his behalf. The money received by the Camerons, however distasteful we find it that they got anything at all given their wealth, was not claimed fraudulently and we are only doing ourselves a disservice if we say anything else.  

So – Lord Carter has said in a report published today that hospitals need to find a solution to ‘bed blocking’. Now, that’s an easy one. I know what needs to happen. Four words – sort out social care! If the Government was prepared to spend some money on doing this rather than cutting services left, right and centre, otherwise healthy people could be discharged safely from hospital as soon as they are better, freeing up their beds!

Sorted.

How do I know this? Because I was bed-blocker myself. Last winter I became ill. Very ill. I had to be taken into hospital for, what proved to be, a lengthy stay due to having developed a seriously infected pressure sore. Now, I am more than prepared to acknowledge that, initially, hospital was the best place for me. I need IV antibiotics and thrice daily dressing changes and specialist treatment and stuff like that, but I was, to all intents and purposes, ready for discharge three or four weeks before it actually happened. Sure the wound from the sore was still there but the infection had been dealt with. The PIC line, the way the medics were getting the IV antibiotics into me was removed and I was given tablets to take instead. I was ready to go. Well, I say I was ready to go but that didn’t actually happen. Not then, anyway. I continued to lie in my hospital bed in the ward, for several weeks, after I had been told I could go home.

I became a bed-blocker.
The thing that stopped me and delayed my discharge was trying to organise a home-care package for me. I needed two things, medical attention to continue with changing the dressings and ensuring the infection didn’t come back and a care package so I could have people coming into my home every day to help wash, feed and do some cleaning for me. Medical care was easy. District nurses and my GP could deal with that. It was the home-care package that was the sticking point. It was only after I had made many several tearful phone calls to a contact I have on my local council that Social Services got their act together and a package was agreed so I could leave. Social Workers did their best but found it nigh on impossible to sort out an agency to provide the carers I needed. Three visits, with two carers each time, every day. A grand total of 31.5 hours each week.

As far as I can make out the major issue was the amount of money carers are paid. Considering the things they are expected to do their rate of pay is derisory, under ten pounds per hour. That’s all. They get no money to cover the time they spend travelling between jobs, under ten pounds per hour for the time they spend with an actual client. Most of the ladies that come to me have several clients they are paid to see but they get nothing for the travel time between us all. This can amount to two or three hours travelling time every day but they get nothing for it. And, there should be sufficient money in the budget to allow carers to spend the necessary time they need with clients as well. Fifteen minute visits need to end now. How can anyone be expected to care for someone properly in just fifteen minutes? Short-cuts will happen and people with suffer.  

The Government really does need to take a long, hard look at social care in this country. Social Services should have sufficient funds to be able to pay carers a reasonable sum for what they do. Carers should be recompensed for the time they have to spend travelling if they are visiting several people every day. Salary levels should be increased so that more people can be attracted into, what can often be, a very difficult role. If we are entrusting the care of our older and disabled citizens to an under-funded service. What can we expect apart from people left languishing in over-stretched hospital wards for far longer than is needed. Bed blocking is a problem that is only likely to increase as our population ages. Until there is enough funding for proper social care, we can expect more and more otherwise healthy people to be left in our hospitals far longer than is needed. There may currently be a cash-crisis but, unless our Government starts looking for a longer term solution and increases funding for social care improvements, things are only likely to get worse. People who have no need of a hospital bed will be left on our wards for weeks whilst people who are in urgent need of treatment will have nowhere to go.

Listen to the professionals who know what they are talking about. Stop the penny-pinching and start investing. Bed blocking shouldn’t be allowed to happen any longer. Act now before it’s too late and a fixable problem becomes an insurmountable crisis. Fund social care properly and stop expecting home care professionals to work for nothing.

So. There are two news stories that have grabbed my attention this morning. Two stories which need to be investigated and which need to be shared as widely as possible. Two stories which are indicative of the pain and suffering this Conservative Government is inflicting on the people of Britain. Two stories which make no sense.

The first is about a woman, a victim of domestic violence and rape, who has had a ‘panic room’ installed in her home, by her local police force, for her safety. Our government has decided, in it’s infinite wisdom that this room is an unused bedroom in her house and they have charged her ‘Bedroom Tax’ for it. This woman took her case to court and the court found in her favour. Our petty Government has decided to spend, what must be, thousands of pounds of tax-payers money appealing this judgement. It makes no sense.

And this is not the only story I have read recently about Bedroom Tax. Stories abound about how unfair it is or how cruelly it is being implemented and imposed. Disabled people who are being charged for rooms where they have to store necessary medical equipment such as wheelchairs, hoists, ventilators and medication. These are not bedrooms, they are storage areas. Then there are the disabled people who have a bed in a room that is not used every night. It is a room that is used when that person has to have to have a carer stay overnight sometimes to keep them safe and out of hospital. Then there are the rooms that were used by a disabled person who has died or by someone who has had to go into permanent care. These people’s relatives are not being given time to grieve or adjust to what has happened before the draconian Bedroom Tax is imposed. How insensitive, how stupid, how uncaring can this Government’s policies be? It makes no sense.

The second story is about all the disabled people who have been been reassessed for their welfare benefits due to the change over from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). These are people who are severely disabled and who, under DLA, were awarded the highest level of payment for mobility. As a result they were able to access a specific charity, Motability, which allowed them to be able to lease a car and, if needs be, have adaptations made to that vehicle so they could use it or drive it themselves. A vital lifeline. Now, thanks to the reassessment many people have had to have, their mobility needs have, in the eyes of the Department for Work and Pensions (DWP), improved and downgraded so they have lost their vehicle. And we’re not talking about one or two people, no, the number we’re currently talking about is in excess of 14.000 people. 14,000 people whose medical condition has, miraculously, improved to a point where they no longer have sufficient mobility difficulties to warrant needing a car or adaptations. 14.000 people who may be using these cars to get to and from their place of work and who may now have to give up their jobs and claim unemployment benefits instead. Is this what the Government wants? They are forever reciting and repeating their mantra of ‘You can work your way out of poverty’ but how can disabled people do this if Government policies are meaning they can no longer get to the jobs they already have. As a disabled woman on the news last night said, the new benefit, PIP, is neither personal nor promoting independence. It makes no sense.

How is our government, our Tory government, getting away with wasting so much of our money? How are they getting away with it?

Challenging a legal ruling about Bedroom Tax such as the one about the woman with the panic room, installed for her safety, by the police, makes no sense. Imposing Bedroom Tax on disabled people for having a spare room which they us for their carers, makes no sense.

If disabled people need their vehicles so they can go out to work and contribute to the economy rather than claim welfare benefits and be an economic drain then reassessing them so they lose those vehicles makes no sense.  

This Government needs to stop, and stop now, before they become a worldwide laughing stock. There should be no more wastage of the money that they purport to want to save on legal challenges and benefit changes that must cost more overall, than they keep in the country’s coffers. People are suffering. Our country is suffering. How much longer will it be before everyone at home and our trading partners abroad start to realise that everything that is now happening, everything this Government is doing, makes no sense.

I have just been reading a very disturbing tweet.

The tweet was from a  woman with a psychiatric condition who was reassessed for her benefits when she had a change of circumstances. During the assessment she expressly gave the assessor details of her representative. She watched him enter this information onto the form he was completing about her. There was no question that he knew exactly who her representative was.

We can all imagine therefore, how horrified she was, when the DWP report from that meeting was sent subsequently, not to her named representative but to a relative who she was trying to protect from learning of the seriousness of her condition.

This is outrageous.

This cannot be allowed to continue without being challenged..

More and more it appears that our Government, and their various departments such as the DWP and DoH, seems to think there is one rule for them and another rule for the rest of us and this must not be allowed. It has to stop.

What has happened in this instance is a massive breach of Data Protection legislation, but this is just one of many instances. This sort of case seems to be happening over and over again. We need to start taking these breaches to court every time they happen and hold the DWP and the Government to account. Our Tory Government cannot be allowed to ride rough-shod over all of our hard-won rights and legislation. They need to learn they cannot just break the law willey nilley to suit themselves without repercussions and they need to learn it fast..

We have already seen several court cases where the Government, and the DWP in particular, have been challenged about what they have been doing to disabled people and carers in this country that they seem to anticipate won’t fight back, how many more cases do there have to be? The United Nations are currently investigating what has been going on, there a court cases every week, there are stories about what is happening in the press and on social media daily, How much longer can this be allowed to continue? What is this Government doing to the people of this nation?

They are laughing at us all.

They are trying to set us up to hate each other so we do nothing about the harm they are causing.

Just because we are not as rich as they are, just because they tell us they know what they are talking about, just because they are changing existing legislation and enacting new legislation to make things better for themselves and worse for us, we must not knuckle under and allow it to continue.

The longer this Government feels that they are getting away with the damage they are doing, the more they are going to go on doing it. They have already tried to restrict our access to Legal Aid, almost certainly with the ultimate aim of restricting our ability to challenge them in court, and we must not let this happen. We must fight it all the way. If needs be, maybe we need to establish some sort of fighting fund that people can access if they need help. Charities and voluntary organisations are all doing a marvellous job but they are stretched to capacity and seriously under funded. We all need to do our bit and support each other as much as we can. One person, on their own, is weak and powerless, together we can be strong and powerful. We can win this if we all do our bit. Challenge everything they try and do to us. If it doesn’t seem right it probably isn’t. Fight it.

It’s funny, I never thought I was a rebel but, apparently, I am. I hate to see injustice and I will continue to challenge it to the best of my limited ability. Let’s all fight together and then, who knows, just maybe, we can win.

We must all stand together and shout, with one voice, ‘No! We have had enough!