Archive

Personal Assistants

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.    

Advertisements

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.

It’s funny. Everyday there is something in the papers or online that rattles my cage and makes me want to write stuff. And, almost always, it’s something the Government has done, is about to do or is thinking seriously about doing that gets me incensed enough for me to get itchy typing fingers and for the words to flow. I sometimes wonder if I should write David Cameron a thank-you note. Honestly. if it wasn’t for him I’d find myself with very little to say.

Yesterday, I wrote my blog about bed-blocking in hospitals due to the paucity of Social Care in the community. Today my ire has been raised by the Government’s plans to deport people who are not EU citizens, from the start of April. Two different topics but topics that are, none the less, inter-connected. Many of the dedicated men and women who are employed by agencies nationwide as home-care workers are the non-UK nationals and are the very people who are likely to be affected by this deportation policy. Just thinking about the dedicated team of ladies who come, every day, to look after and help me. They are from many different countries that are not part of the EU. Somalia, Democratic Republic of the Congo, Jamaica, Malaysia, Nigeria. All wonderful, caring individuals and none of them an EU citizens. Granted, several are married to British citizens and, granted, some of them may have ‘Indefinite Leave to Remain’ status but, I’m equally sure, some of them don’t. They have work permits and visas that allow them to work, I’m certain none of them are here illegally, but, at least some of them, have not, as yet, achieved British Nationality  

And this, as far as I am concerned, is the problem. So many people who work for the many agencies we have, nationwide, that provide home-carers, are not British or EU nationals. They, invariably, work for a low wage, well under the required £35,000 per annum that is the cut off point in this policy, so their continued stay in this country must be under threat. They may well find that they are going to be deported because they don’t earn enough. Over the past year I have been cared for by people from all over the world and now they are all under threat. How is the Government planning on alleviating the problem of bed-blocking in our hospitals if they are going to be deporting the very social care workers who will be needed if patients are to be discharged and allowed to return to their own homes? What are they going to do?

As always, I believe Mr Cameron and the Tories have failed to consider the longer term implications of the policies they are proposing. Everything is connected and our politicians need to think about these connections when they propose new legislation and before it is enacted. How will the situation that is causing us a problem today be affected by what we are thinking about doing tomorrow. How is the legislation that was passed yesterday going to affect our proposals for the future. Day after day we see the possible difficulties that might be caused by a knee-jerk reaction to something or other. One policy affecting another and causing more problems than it solves.  

I believe that there needs to be a rethink the deportation of non-EU citizens and this rethink needs to happen fast. We have all seen the stories about the teachers, health care professionals and charity workers who are going to have to return to their countries of origin if this legislation continues without reform but we also need to think about all the other, lower paid jobs that non-EU citizens are employed to do. We need to think about how we will cope if they all have to go. We need to think about how our lives will be affected. We need to think about who will do the work they are currently doing if they are not here. What will happen to us all if they are forced to leave.

We just need to think.

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.

It’s funny. I expect that many, many people think that having people coming in to do things for you every day must be really nice. Some may even be willing to pay quite a lot of money for the privilege. But, for a disabled person who has to rely on carers for everything it’s not always that good. I hate it.

I don’t want to sound ungrateful but having carers, personal assistants or PAs as I prefer to call them, is not the barrel of laughs you might think it is. Sometimes you just want them to all go away and leave you alone.

I don’t know about other disabled people but I seem to spend three quarters of my life explaining the same thing to the same person over and over again.

You want a cup of coffee? Even though your PA has made you coffee every morning for a year they still bring the mug to you and ask if they have put right amount of granules in. They still ask if you want sugar. They still ask if you need milk. Every time they make you a coffee, they ask. Stop asking! Just make the coffee the same way you made it yesterday, the same way you made it last week, the same way you make it every day, it’ll be fine. 

And so it goes on. At lunch time they come and tell you there is nothing in the fridge for you to eat when you know there is. Why can’t they try moving the milk or the eggs or whatever is at the front of the shelf and looking properly. The cornish pasty you want is probably at the back or on the second shelf and not the top one. Have they never heard of using their initiative and actually looking? They don’t have to ask about every single thing they do, all the time do they? Perhaps they do, I just don’t know.

Then there is the massive indignity of the whole thing. People coming in every day to wash you and clean your teeth and dress you. Strangers walking into your room every day and waking you up by stripping the bedcloths off you with hardly a word. Having to lie naked in bed every day letting someone you are not having a relationship with touch you in places that you would prefer not to be touched. I hate it.

And there are other things to consider as well. If you have your PAs supplied through Social Services or an agency you have no idea who is coming into your house on a daily basis. Someone you have never seen before puts the key in the lock and just walks in. They could be anyone. How are you supposed to know? So, they know the code to the key safe outside the front door but how? Someone else could have told them. They could be here to rob you or murder you or vandalise your home. You just don’t know.

And there is even more. If you are someone who has what is known as double handed care, in other words, two PAs per shift, there are even more things to put up with, especially if, like me, your PAs have English as a second language. What are you supposed to think when they start talking to each other in their own language over the top of you whilst they are washing you. What are you supposed to think when they both laugh at something and you have no idea what it is. Are they explaining something difficult about the task in hand to each other or are they talking about you? And the phone calls. They all seem to have mobile phones that go off all the time which they answer and chatter on in a foreign language in front of you. What are you supposed to think then? Are they talking about you? You just don’t know.

For non-disabled people who have never experienced it, having a PA seems like a good idea in theory but in practice it’s not alway as much fun as it sounds. I see PA support as a necessary evil. I recognise that I need my PAs in order to live but I wish, just sometimes, that they would leave me alone and go away. Privacy and autonomy matters and are a precious things but they are both things a disabled person loses as soon as they have to start having to use a PA.

What I would really like, just as a special treat, is a day to myself where I can have a lie-in if I want, eat what I want and do what I want without having to have to explain anything to anyone. Will it ever happen? I hope so, I just don’t know.