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What an eventful political week.

Who could have predicted the momentous turn of events we have just witnessed only one, short month ago. Not me, for one. Saying goodbye to David Cameron and his team and hello to Theresa May and her’s is going to change so many things, long-term, for us all.

But, what do I as a disabled person, want to see delivered by the new regime?

Well, for a kick off I want to see an end to all Welfare Benefits sanctions, in particular sanctions which mean that disabled people are left without sufficient money to pay for food and medication and rent and energy costs and transport costs. I would like to see proper Welfare Benefits for disabled people where we didn’t have to continually justify our existence or prove how ill we are at every turn. Applying for Disability Benefits and attending never-ending face-to-face assessments or tribunals is soul-destroying, mentally traumatic and largely unnecessary. I want to see an end to people being punished for the crime of being too sick to work and being awarded benefit levels that allow us to actually live not just subsist. Just because we are either born or become too ill to earn our own livings does not mean we should always be put at the bottom of the heap or made to feel as if we are a burden on our families and society through no fault of our own.

I would like to see physically disabled people being able to access proper equipment based on what we want not what the government deem us as needing. The cheapest option is not always the best option in the long term. Giving us the bare minimum could be counterproductive. Spending a bit more to help us now may well mean less needs to be spent in the long term because our medical conditions might not deteriorate as fast, if at all because we are not having to struggle all the time for everything. There needs to be better provision of proper Mental health care and access to inpatient and outpatient treatment for as long as it needed, not a one size fits all system. Everyone is different and this needs to be recognised. There should also be mandatory mental health first aid training for anyone working with young or vulnerable people and for both physically and mentally disabled people, proper support for the NHS. I would like to see more funding made available for medical research which may lead to a better understanding of disabling conditions, better treatments and possible cures.

Another important consideration for many disabled people is care. I would like to see more money put into support for family carers, support for young carers. There should be mandatory respite care, for all disabled people of at least two weeks, annually allowing both disabled people and their carers a break where they can relax, safe in the knowledge that needs will be met. I would like to see this combined with increased level of social care. I would like to see family carers paid a living wage rather than just receiving the paucity which is Carer’s Allowance. I would like to see proper recognition of the value of family carers and how much money they save the nation. I would also like to see a proper rate of pay for all social carers. Without them and without family carers many more disabled people would need residential care or hospitalisation at a far greater cost to Social Services and NHS budgets.

And then there is transport and transportation costs. I would like to see a version of Taxicard available nationwide. I would like to see more investment in a fully accessible transport network. I would like to see much wider provision of wheelchair accessible transport such as Dial-a-Ride services and wheelchair accessible mini-cabs. Blue badges need to be universal for hospital carparks. There should be free parking or a refund of reasonable travel costs for relatives of people who are long-term in patients in hospitals.

These are only my initial thoughts and things that affect me personally the most but there are so many other things I feel that our new Prime Minister and her Cabinet should tackle that could benefit the lives of disabled and older people nationwide. Education, Transport, Access to Justice, Employment, the list is never ending.

Am I hopeful that we will see any of this?

Frankly, no.

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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.  

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.

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.

Well. That was interesting. I’ve just been reading a post on facebook that a friend has written about how life has changed for him since he became ill and restricted to bed two years ago. And it’s got me thinking about me and my life. It’s only been a year since I got really ill and things changed for me but, oh boy, what a change.

Sure, I’ve been disabled for years having first been diagnosed with MS way back in 1985 but, apart from becoming a wheelchair user in 1998, I have been able to live a pretty ‘normal’ life throughout. Uni, children, work, making a home, more work, more Uni, same as the rest of my peers. Then it all went pear-shaped, in the form of an infected pressure sore that got me into hospital for a while, and my life started going off in directions that I had never even considered. Suddenly, instead of going out every day, seeing my friends at local cafes and restaurants and being a ‘lady who lunches’ on a regular basis, volunteering every week at an organisation just down the road, living my life to the full, I found myself stuck in a bed in my living room 24/7 with carers coming to look after me three times every day.

I think the invasion of carers has been the hardest thing to come to terms with. That and the enforced inactivity. That’s not something I’m used to and I can’t say I like it very much. It’s so dull a lot of the time, me, my computer, the TV and a bed. I think, if it wasn’t for my computer and my broadband access I’d have gone completely nuts! But having to use carers for everything, that has been so tough. I now have people coming in three times every day to do all the things I used to be able to do for myself. They wash me, dress me, provide me with food, do my laundry, wash up and everything and I don’t think I like it very much. I don’t like losing control over what I do and when I get to do it.

Sure, having someone to do the washing and sweeping and hoovering and general housework is quite nice but fighting the words written in my care plan is not nearly so good. Agency carers don’t do anything that’s not in the care plan so, when I asked one the other day if she could wipe down my bathroom sink with some Cif cleaner and clean the toilet for me she said no because that sort of cleaning is not in my care plan. The problem appears to be the fact that I live with my two adult children so social services expects them to do all the cleaning and not my carers, even though it’s what I used to do myself before I got stuck in bed. I always thought that my carers were there to do the things I couldn’t do myself due to my disability but apparently there are imitations. Having family members living in the same household means they have to do everything, even the things that used to be my job. It doesn’t seem fair. I want to be able to go on being the Mum that I was, doing everything I did before, but I can’t and my carers won’t and I don’t like it. And the privacy thing is bad too. I really don’t enjoy having so many people seeing me naked and touching my body when they wash me and dress me. I wish  could still do it myself or, at least, choose who does it but I can’t and it’s soul-destroying.

I don’t like the other restrictions I now have to live with either. I have to plan when I go out so I can sort out carers. Spontaneity has vanished from my life. No more hoping on a bus and going into town when I want to, I have to give my carers notice that I am going out and negotiate how long I get. My final visit of the day is at 6pm and that’s when they come to get me ready for sleep and put me to bed for the night. 6pm bedtime! I feel like I’m a toddler again, not a middle-aged adult. I like going out in the evening and going to see musicals or visiting folk clubs or even, friends, but I can’t do it any more without massive amounts of forward planning. Whatever I want to do, I have to make sure I’m home by 8.30pm because the care agency doesn’t provide carers who work after 9pm. I’m looking to having Direct Payments which will mean Social Services give me money to hire my own carers which will give me so much more control but that is still in the pipeline and has not become a reality as yet.

Essentially, looking back over the past year has been a bit of an eye-opener. So much has changed and I am having to get used to a very different life from the one I had before. It’s a life I never really expected to have. I suppose I might get used to it eventually but that doesn’t mean I like it. I don’t. I just want to be the me I have always been and live my life the way I would like to live it but that, I suspect, that is never going to happen again.