Saturday, 29 March 2014
Coke Floats & Chemo: Rattling Cages
Coke Floats & Chemo: Rattling Cages: Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in...
Rattling Cages
Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in motion a chain of events that means that, in a few months time, nothing will ever be quite the same for my family again.
The book I've been writing for the past four months is finished, I've chosen the photos for the cover design, and at some point during the summer, I will be a published author. Exciting beyond belief, but also daunting and a little scary too, because this could be a very controversial book, and there will be many within the elite senior management and political ranks who will wish the book had never been written, and may do all within their power to discredit and silence me.
Luckily, mine is not a lone voice. There are many of us coming together, seeking a better way forward, a more accountable approach, and a kinder, more humane way of doing things than the current systems in place within the NHS, Education and Social Services. Initially we were all lone voices, swimming against the tide, with nobody listening. Twitter has helped many of us find each other. Each one of us with important stories to tell, or with innovative new ways of doing things already being implemented, or with our individual visions of how the future should look like for supporting the most vulnerable people in our society with compassion, dignity, respect and care.
If you are on Twitter, you might like to follow some of these inspirational voices, all doing their own bit to make the future a better one for everybody:
@patientmemoirs @DrUmeshPrabhu @NHSwhistleblowr @meandme10 @KayFSheldon @HelenHSAUK
@wwwframeworks4c @WhoseShoes @JusticeforLB @curetheNHS @willcpowell @stopcoverups @archangelolill@suzancollins @GrangerKate @AlysColeKing
There are many more, all with their part to play in rebuilding things better, if only we are allowed to be heard.
The book I've written, called "The Special Parent's Handbook", is written primarily for parents who are at the sharpest end of the best and the worst that statutory services can offer. They are parents whose children are disabled or seriously ill. I've tried to write the book I wish I'd been given on the day I was first told I had a child with serious disabilities. When I was first thrust, completely unprepared, for a lifestyle so different from anything I had ever envisioned.
At first I was overwhelmed with a what seemed like a blanket of despondency and fear. There was no set of instructions, no one I knew who had ever had to cope with anything like I was facing, and I had no clue of what to do or where to go for help. Meanwhile, it felt like every clinician, therapist, specialist and social worker was queuing up to strip away yet another layer of privacy and self-confidence. Everything I knew to be rock-solid about the world was collapsing around me, and I didn't have a clue how to be a parent to a child with complex needs and profound disabilities who would spend most of his next six years in hospital fighting for his life. He was never expected to survive more than a few short weeks; in three week's time we will celebrate his 20th birthday.
On the way through his childhood, stumbling a lot, falling often, but sometimes getting it right, it was discovered that his older sister and his younger brother both had a whole list of disabilities of their own, completely different to his. Their conditions are almost invisible, yet have a significant impact on virtually every aspect of their daily lives.
Over time, I learnt a lot, and as a family we started to get it right much more often than we got it wrong, and it's now time to pass some of that learning onto other parents. There's nothing quite like being diagnosed with incurable cancer, like I was a year ago, to make you realise there's no time to waste in getting things like this done and dusted.
I've tried to write a comprehensive parenting guide covering all the stages of childhood and virtually every eventuality along the way. In the end, the hardest bit was deciding what not to included, because if I'd put in everything it would have been longer than War and Peace.
There are chapters on getting the news and absorbing it without losing the plot, how to keep your own relationship from becoming a casualty of the untold stress, how to handle long hospital admissions, endless out-patient appointments and all sorts of other meetings too. Some chapters deal with finding ways to give all your children a happy childhood, packed with ideas of things you can do even when you can't go out and about or on holiday or take your eye off the child that may stop breathing at a moment's notice. Other chapters deal with our Education System and how to get the very best deal for your child, and Social Services, about how they can help but how, like every other service, the help they can offer says much more about funding, budgets and politics than it does about the help your child actually gets. A lot of the book looks at how you slowly become the only true expert about your child, and the frustrations that can cause when no one will listen to you, but also strategies to give your feelings the best chance of being heard. There is also a chapter on food issues as well as one about coping with meltdowns.
All through the book I've put a Tips, Tricks & Strategies section at the end of every chapter. A lot of it you'd never see anywhere else, because they include some of the oddball quirky solutions we've had to make up as we went along, sometimes as a matter of urgency. It's very much a hand's-on, practical guide from one parent to another, and there are a few laugh out loud moments too scattered along the way. It's honest, and I try to tell it as it is, highlighting the appalling errors I've sometimes made as we muddled through. That's often when the best lessons get learnt. An academic, preachy tome this is not.
Inevitably, the readers will learn a lot about our family too, since I've used various real-life moments from our house to illustrate things in the book. They won't be able to fail to notice how incredibly proud I am of all three of my children, now on the brink of adulthood, and all that they have overcome and how much they have achieved, against very considerable odds.
There's also a fair amount of criticism about the services that too often fail families like ours, and how these clunky organisations often don't support the individuals who work for them in being able to reach out and offer the help we need. So often small changes would make all the difference, low-cost or no-cost solutions, sometimes these solutions could even result in the saving of thousands of Public Sector money. All it would take is a tiny shift in attitude sometimes, or a slightly different approach, and everything would join up and work so much better.
A handful of people have already read the book, including some professionals and some "Special Parents" too. All of them have said that this book should be a "must-read" for everyone who works with anyone with disabilities. If they read it, I'm pretty sure some of them won't like it, but I hope I've been fair, pointing out the inspirational, devoted care we've received as a family as well as some examples of the less good. Some of the professionals who have already been kind enough to read it for accuracy have told me that they have changed their approach already as a result of what they learnt from the book, which was lovely of them to say and made me feel really encouraged.
Another person who has been really encouraging all the way through is Rosa Monckton, who is also an expert in this field since she is a mother of a daughter with Down's Syndrome. Rosa is also a tireless campaigner for improvement in the services currently on offer to children with disabilities, and has presented some very hard-hitting TV documentaries on the subject.
Rosa has very kindly written the Foreword to the book. Her words are very powerful indeed, and I am so grateful for her enthusiasm and endorsement of this project. In her Foreword she also says that it should be read by all professionals working with disabled people, and she goes so far as to call my book "A Story of our Time".
So, it's all out of my hands now. We'll just have to wait and see what happens when it gets published. There are bound to be detractors, but I'm crossing my fingers that they will be outnumbered by the people who read the book and can feel the spirit in which it has been written.
Just because I've sent the book off doesn't mean I can sit and chill on the sofa until it gets published then swan about signing books and smiling when it comes out with a glass of champers in my hand. That would be nice.
Instead, I've now got to focus this technophobic brain of mine into mastering how to design a website, a Facebook page, and sort out all the PR for the book too. There's no point in writing a book if no one knows about it to buy it. I've being interviewed by a journalist who writes for The Guardian on Monday. We'll be talking about another aspect of disability for a different publication, but she has already asked for an early review copy of the book, and may be able to do a high-profile feature about it nearer the publication date. All good stuff.
There is also something far more important than any book that I'll be focussing a lot on over the next few weeks, in fact forever. We are only a few days away from welcoming my first Grandchild into the world. A little boy. His parents are very young teenagers, but they have both more than risen to this huge challenge, and despite their tender years, they have the makings of becoming fabulous parents. My little boy, now 16 and a whole foot taller than me, will be a Dad. Both the young parents come from strong, stable, supportive and loving families, and we will all pull together to give this little lad the very best start in life he could wish for. It also means that, despite my less than great prognosis, I will live to be a Granny.
Exciting times, new life and a new generation. Wouldn't it be just fantastic if this next generation of children grow up with the services properly in place to support both them and their families, and that those services do exactly that?
The book I've been writing for the past four months is finished, I've chosen the photos for the cover design, and at some point during the summer, I will be a published author. Exciting beyond belief, but also daunting and a little scary too, because this could be a very controversial book, and there will be many within the elite senior management and political ranks who will wish the book had never been written, and may do all within their power to discredit and silence me.
Luckily, mine is not a lone voice. There are many of us coming together, seeking a better way forward, a more accountable approach, and a kinder, more humane way of doing things than the current systems in place within the NHS, Education and Social Services. Initially we were all lone voices, swimming against the tide, with nobody listening. Twitter has helped many of us find each other. Each one of us with important stories to tell, or with innovative new ways of doing things already being implemented, or with our individual visions of how the future should look like for supporting the most vulnerable people in our society with compassion, dignity, respect and care.
If you are on Twitter, you might like to follow some of these inspirational voices, all doing their own bit to make the future a better one for everybody:
@patientmemoirs @DrUmeshPrabhu @NHSwhistleblowr @meandme10 @KayFSheldon @HelenHSAUK
@wwwframeworks4c @WhoseShoes @JusticeforLB @curetheNHS @willcpowell @stopcoverups @archangelolill@suzancollins @GrangerKate @AlysColeKing
There are many more, all with their part to play in rebuilding things better, if only we are allowed to be heard.
The book I've written, called "The Special Parent's Handbook", is written primarily for parents who are at the sharpest end of the best and the worst that statutory services can offer. They are parents whose children are disabled or seriously ill. I've tried to write the book I wish I'd been given on the day I was first told I had a child with serious disabilities. When I was first thrust, completely unprepared, for a lifestyle so different from anything I had ever envisioned.
At first I was overwhelmed with a what seemed like a blanket of despondency and fear. There was no set of instructions, no one I knew who had ever had to cope with anything like I was facing, and I had no clue of what to do or where to go for help. Meanwhile, it felt like every clinician, therapist, specialist and social worker was queuing up to strip away yet another layer of privacy and self-confidence. Everything I knew to be rock-solid about the world was collapsing around me, and I didn't have a clue how to be a parent to a child with complex needs and profound disabilities who would spend most of his next six years in hospital fighting for his life. He was never expected to survive more than a few short weeks; in three week's time we will celebrate his 20th birthday.
On the way through his childhood, stumbling a lot, falling often, but sometimes getting it right, it was discovered that his older sister and his younger brother both had a whole list of disabilities of their own, completely different to his. Their conditions are almost invisible, yet have a significant impact on virtually every aspect of their daily lives.
Over time, I learnt a lot, and as a family we started to get it right much more often than we got it wrong, and it's now time to pass some of that learning onto other parents. There's nothing quite like being diagnosed with incurable cancer, like I was a year ago, to make you realise there's no time to waste in getting things like this done and dusted.
I've tried to write a comprehensive parenting guide covering all the stages of childhood and virtually every eventuality along the way. In the end, the hardest bit was deciding what not to included, because if I'd put in everything it would have been longer than War and Peace.
There are chapters on getting the news and absorbing it without losing the plot, how to keep your own relationship from becoming a casualty of the untold stress, how to handle long hospital admissions, endless out-patient appointments and all sorts of other meetings too. Some chapters deal with finding ways to give all your children a happy childhood, packed with ideas of things you can do even when you can't go out and about or on holiday or take your eye off the child that may stop breathing at a moment's notice. Other chapters deal with our Education System and how to get the very best deal for your child, and Social Services, about how they can help but how, like every other service, the help they can offer says much more about funding, budgets and politics than it does about the help your child actually gets. A lot of the book looks at how you slowly become the only true expert about your child, and the frustrations that can cause when no one will listen to you, but also strategies to give your feelings the best chance of being heard. There is also a chapter on food issues as well as one about coping with meltdowns.
All through the book I've put a Tips, Tricks & Strategies section at the end of every chapter. A lot of it you'd never see anywhere else, because they include some of the oddball quirky solutions we've had to make up as we went along, sometimes as a matter of urgency. It's very much a hand's-on, practical guide from one parent to another, and there are a few laugh out loud moments too scattered along the way. It's honest, and I try to tell it as it is, highlighting the appalling errors I've sometimes made as we muddled through. That's often when the best lessons get learnt. An academic, preachy tome this is not.
Inevitably, the readers will learn a lot about our family too, since I've used various real-life moments from our house to illustrate things in the book. They won't be able to fail to notice how incredibly proud I am of all three of my children, now on the brink of adulthood, and all that they have overcome and how much they have achieved, against very considerable odds.
There's also a fair amount of criticism about the services that too often fail families like ours, and how these clunky organisations often don't support the individuals who work for them in being able to reach out and offer the help we need. So often small changes would make all the difference, low-cost or no-cost solutions, sometimes these solutions could even result in the saving of thousands of Public Sector money. All it would take is a tiny shift in attitude sometimes, or a slightly different approach, and everything would join up and work so much better.
A handful of people have already read the book, including some professionals and some "Special Parents" too. All of them have said that this book should be a "must-read" for everyone who works with anyone with disabilities. If they read it, I'm pretty sure some of them won't like it, but I hope I've been fair, pointing out the inspirational, devoted care we've received as a family as well as some examples of the less good. Some of the professionals who have already been kind enough to read it for accuracy have told me that they have changed their approach already as a result of what they learnt from the book, which was lovely of them to say and made me feel really encouraged.
Another person who has been really encouraging all the way through is Rosa Monckton, who is also an expert in this field since she is a mother of a daughter with Down's Syndrome. Rosa is also a tireless campaigner for improvement in the services currently on offer to children with disabilities, and has presented some very hard-hitting TV documentaries on the subject.
Rosa has very kindly written the Foreword to the book. Her words are very powerful indeed, and I am so grateful for her enthusiasm and endorsement of this project. In her Foreword she also says that it should be read by all professionals working with disabled people, and she goes so far as to call my book "A Story of our Time".
So, it's all out of my hands now. We'll just have to wait and see what happens when it gets published. There are bound to be detractors, but I'm crossing my fingers that they will be outnumbered by the people who read the book and can feel the spirit in which it has been written.
Just because I've sent the book off doesn't mean I can sit and chill on the sofa until it gets published then swan about signing books and smiling when it comes out with a glass of champers in my hand. That would be nice.
Instead, I've now got to focus this technophobic brain of mine into mastering how to design a website, a Facebook page, and sort out all the PR for the book too. There's no point in writing a book if no one knows about it to buy it. I've being interviewed by a journalist who writes for The Guardian on Monday. We'll be talking about another aspect of disability for a different publication, but she has already asked for an early review copy of the book, and may be able to do a high-profile feature about it nearer the publication date. All good stuff.
There is also something far more important than any book that I'll be focussing a lot on over the next few weeks, in fact forever. We are only a few days away from welcoming my first Grandchild into the world. A little boy. His parents are very young teenagers, but they have both more than risen to this huge challenge, and despite their tender years, they have the makings of becoming fabulous parents. My little boy, now 16 and a whole foot taller than me, will be a Dad. Both the young parents come from strong, stable, supportive and loving families, and we will all pull together to give this little lad the very best start in life he could wish for. It also means that, despite my less than great prognosis, I will live to be a Granny.
Exciting times, new life and a new generation. Wouldn't it be just fantastic if this next generation of children grow up with the services properly in place to support both them and their families, and that those services do exactly that?
Sunday, 9 March 2014
Coke Floats & Chemo: The Special Parent's Handbook Update
Coke Floats & Chemo: The Special Parent's Handbook Update: The book is nearly ready to go, I'm well on my way through the final ever edit. A handful of people have already read the drafts and so ...
The Special Parent's Handbook Update
The book is nearly ready to go, I'm well on my way through the final ever edit. A handful of people have already read the drafts and so far their comments have been simply amazing. "Simply the best book a parent of a child with a disability or a serious illness could read", "This book is going to be a must-read for every Professional working with disability", "A story of our time". Everyone who has seen it so far has been really enthusiastic with their praise, and I can't quite believe how well it all seems to be going, and how supportive and lovely people are being.
Supportive and lovely; I can't find two better words to describe someone who has unexpectedly offered me so much encouragement and who is so supportively behind what I am trying to achieve. Rosa Monckton has actually taken the time and the interest not only to read the book all the way through, but she has also written a very powerful and passionate Foreword for the book itself. Rosa has been lovely all the way through, and I am just overwhelmed to have her support and such a strong endorsement from her for what I am doing. Rosa is very well-known as a Disability Campaigner, and she has presented some very shocking and hard-hitting TV documentaries about families in similar situations to mine. She is also a parent of a disabled child. I am so grateful that she is prepared to give my book her stamp of approval.
The Special Parent's Handbook is a hands-on, practical parenting manual for parents who have children like mine, with serious illnesses and disabilities. It's the book I wish someone could have given me the day I gave birth, so I had some idea of what was ahead, the adjustments I would have to make, the prejudices I would have to overcome and the sheer tenacity I would have to develop along the way to ensure all three of my children, each with very different disabilities, would receive the extra help and support they were entitled to from the Statutory Services. At the time, it would also have helped to know that I wasn't alone in this new and rather frightening situation, and I hope this book will also help parents to feel less isolated.
The book isn't all doom and gloom, I'm just not capable of being serious for too long, so a lot of humour and lightheartedness has managed to make its way onto the pages too.
It's partly a story of our family, partly jam-packed with tips, tricks and strategies for the parents themselves, and partly a commentary on having to cope with the Statutory Services becoming intrusively involved with family life. Once a child has been diagnosed with a condition, you often face an onslaught of professionals, supporting, advising and helping, but often just getting in the way too and making an already difficult life nigh on impossible. How the attitudes of staff within the NHS, Education and Social Services can either make or break your day, and how collectively, the culture of each of these organisations and their inability to master joined-up thinking can really push families like mine very close to the edge indeed.
It's bound to rattle some cages and spark some debate, but that's not a bad thing. I've tried to praise the good aspects of the statutory support we've received, whilst highlighting the less good. I've written about this before, but if only the NHS, Education and Social Services departments would listen to those of us on the sharp end of their services and implement our suggestions, they would run much more efficiently, reduce costs, and most of all, massively reduce stress for both workers and end-users alike. I want to help to shape better services for the future, not to whinge or criticise. I hope professionals reading it will recognise the spirit in which it is written, and learn from some of my own experiences. I think they will; whenever I talk to groups of professionals, which is something I've done a fair bit of over the past few years, they are very receptive and warm towards what I say. The message is often very simple - work with parents rather than against them, and everyone, particularly the children themselves, will get much better outcomes with far less wasted time and resources. There are already thousands of individual professionals who see the absolute sense in this model of working, but unfortunately they often find it very difficult to implement due to the clunky processes within the organisations for whom they work.
Once the book has gone off to the publishers, next is designing the website to partner the book, and then it's going to be fun learning how to get the PR right. So there's a lot to do in the few months before the book itself is launched, hopefully in June this year. Thank goodness I'm never happier than when I'm busy with something I can get my teeth into.
Supportive and lovely; I can't find two better words to describe someone who has unexpectedly offered me so much encouragement and who is so supportively behind what I am trying to achieve. Rosa Monckton has actually taken the time and the interest not only to read the book all the way through, but she has also written a very powerful and passionate Foreword for the book itself. Rosa has been lovely all the way through, and I am just overwhelmed to have her support and such a strong endorsement from her for what I am doing. Rosa is very well-known as a Disability Campaigner, and she has presented some very shocking and hard-hitting TV documentaries about families in similar situations to mine. She is also a parent of a disabled child. I am so grateful that she is prepared to give my book her stamp of approval.
The Special Parent's Handbook is a hands-on, practical parenting manual for parents who have children like mine, with serious illnesses and disabilities. It's the book I wish someone could have given me the day I gave birth, so I had some idea of what was ahead, the adjustments I would have to make, the prejudices I would have to overcome and the sheer tenacity I would have to develop along the way to ensure all three of my children, each with very different disabilities, would receive the extra help and support they were entitled to from the Statutory Services. At the time, it would also have helped to know that I wasn't alone in this new and rather frightening situation, and I hope this book will also help parents to feel less isolated.
The book isn't all doom and gloom, I'm just not capable of being serious for too long, so a lot of humour and lightheartedness has managed to make its way onto the pages too.
It's partly a story of our family, partly jam-packed with tips, tricks and strategies for the parents themselves, and partly a commentary on having to cope with the Statutory Services becoming intrusively involved with family life. Once a child has been diagnosed with a condition, you often face an onslaught of professionals, supporting, advising and helping, but often just getting in the way too and making an already difficult life nigh on impossible. How the attitudes of staff within the NHS, Education and Social Services can either make or break your day, and how collectively, the culture of each of these organisations and their inability to master joined-up thinking can really push families like mine very close to the edge indeed.
It's bound to rattle some cages and spark some debate, but that's not a bad thing. I've tried to praise the good aspects of the statutory support we've received, whilst highlighting the less good. I've written about this before, but if only the NHS, Education and Social Services departments would listen to those of us on the sharp end of their services and implement our suggestions, they would run much more efficiently, reduce costs, and most of all, massively reduce stress for both workers and end-users alike. I want to help to shape better services for the future, not to whinge or criticise. I hope professionals reading it will recognise the spirit in which it is written, and learn from some of my own experiences. I think they will; whenever I talk to groups of professionals, which is something I've done a fair bit of over the past few years, they are very receptive and warm towards what I say. The message is often very simple - work with parents rather than against them, and everyone, particularly the children themselves, will get much better outcomes with far less wasted time and resources. There are already thousands of individual professionals who see the absolute sense in this model of working, but unfortunately they often find it very difficult to implement due to the clunky processes within the organisations for whom they work.
Once the book has gone off to the publishers, next is designing the website to partner the book, and then it's going to be fun learning how to get the PR right. So there's a lot to do in the few months before the book itself is launched, hopefully in June this year. Thank goodness I'm never happier than when I'm busy with something I can get my teeth into.
Friday, 28 February 2014
Coke Floats & Chemo: Shocking care politics
Coke Floats & Chemo: Shocking care politics: Toby's been living in a Residential Care Home now for just over a week, and I'd love to tell you everything is settled and happy, bu...
Shocking care politics
Toby's been living in a Residential Care Home now for just over a week, and I'd love to tell you everything is settled and happy, but it's still very early days. I've seen him lots, and each time all he says is "Mummy's House" over and over again, meaning the exact same place he always used to call "Home" when we were out and about and he just wanted to get back and chill.
I know he's having some happy times there, because when I ring up (which I can't seem to stop myself doing several times a day) I can often hear him in the background laughing or making his very own distinctive whooping noises, but it still feels like I've lost a limb. We're taking it a day at a time, and at the moment I'm going to visit every second day, but I don't think it's a good idea for him to come and visit us just yet, because he would think we've collected him and brought him back home for good.
We get a lovely welcome when we visit, not just from Toby, but from all the residents. They don't get many visitors in the home, and so they have all adopted WM and I as their own. If Toby gets a hug, they all want one. There is a bit of a fascination with the fact that Toby has actually got a "Mummy" at all. The residents who can talk all chat very openly about how their Mums and Dads died, and then they moved there. One resident told me that you have to have a dead mummy to live there, and another one asked me "Are you going to die soon, then?". I find it quite hilarious, luckily, considering that Toby's only had to move out because I've got incurable breast cancer. One lady was chatting on about her parents, and I asked her if she missed them. She said, "No, course I don't miss them, they're dead, so they're gone". The matter of factness that sometimes accompanies learning disability can sometimes just break your heart.
Their openness is also very reassuring. They all seem to want to take Toby under their wing, and it's obvious that they are looking out for him, just as they clearly look for each other. They also talk about how lovely the home is, and how kind the staff are, all things that you just hope against hope are true even when you're not there to see what goes on, but it's clear that everyone is well cared for, and they all seem to have a very relaxed, happy rapport with the staff.
I'm trying to get a new perspective on Toby's move. Instead of comparing it to how his life was a couple of weeks ago, still living at home, I'm trying to compare his arrival in new circumstances with the experiences of his new house-mates. It must be so awful arriving somewhere completely new and alien, within hours of losing a parent. These people don't have the understanding or the awareness that most of us have, they must be so bewildered and bereaved, but without the capacity to be comforted and reassured. It must be so frightening, and so desperately sad too.
By comparison, Toby's had the opportunity to spend a lot of time there over the past few weeks, staff at his college have supported him in buying things for his room and decorating it with lots of photos and things he likes, he knows we live directly opposite and that we'll see a lot of him, and he is still in exactly the same community he grew up in. Yet it's still hard, and he is still bewildered and confused, so goodness knows how hard it must be for most people in his situation.
I had a really tough time in getting our local authority to agree to fund his place there. The current sociological ideology is that all adults with learning disabilities must be placed in a new type of housing called "Supported Living", and the very concept horrifies me, along with thousands of other parents in my situation.
The sad thing is that nearly every individual you come across within Social Services is coming from a good place in their hearts, and they are striving to do their best. They must often share the same frustrations we parents feel, and too often, they get cast in the role of the "bad guys". The real bad guys are the ones that simply don't pump enough money, resources, thought and infrastructure into the system they have to work within. They have too many vulnerable people to support, with nowhere near enough funding. So it's often the Social Workers themselves who have to be the messenger, the one who says no to something that the family feel is totally essential. There are no winners in this awful situation, the Social Worker feels dreadful and the family too.
We were very lucky, we had a very pro-active Social Worker who understood immediately why I wanted what I did. Her honesty really helped make the whole process easier, she was very upfront and told me not to get my hopes up, and explained all the hurdles ahead, but she promised she'd try. Somehow she helped to make it happen. I'd love to buy her chocolates, flowers and champagne as a Thank-you, but sadly, I'm not allowed to. Social Workers have to work within such restrictively tight rules and regulations, that even the tiniest box of chocolates is seen as bribery and corruption, and could lose her her job.
In the same way as many Statutory organisiations, the individuals within the system are fighting too, to somehow make sense out of a framework that simply cannot work. They are fighting to make a difference to people like Toby, and so often, despite their very best efforts, nothing changes. The policy makers base their decisions on evidence-based research, but sometimes this means taking a broad-based stroke and applying it to everyone, without the flexibility to see that one size really often doesn't fit all. At individual Local Authority level, sometimes this ideological thinking is adopted too quickly, or without the financial resources to really make it happen the way it should, and then the Social Workers have to deliver a watered-down version of something that could have been really good, but actually doesn't work that well for many of their clients at all. They can see this. The clients can see this, and their families can see this. Yet it's always the poor Social Workers that get the blame.
The ideas behind Supported Living come from a good place, but are being interpreted too widely, and much too quickly, with little long-term thought seemingly being applied. Basically, the idea is that everyone deserves to live autonomously in their own home, with carers coming to them and doing the things with them that they need to be done or that they want to do. It's a fabulous idea if you apply it to the frail elderly, because it means that they can keep their independence and still maintain their own home. However, even with the elderly, the way it is being administered leaves a lot to be desired - a lot of them are trapped in bed until somebody arrives, flustered, overworked and running late, with a 15 minute window of time to get them out of bed, toileted, washed and breakfasted before moving on to their next frail client. The poor care workers don't have time to do what these old people really want, to stop and chat and pass the time of day. They are so time-pressured, and they are working alone and unsupervised, so with the best will in the world, impatience verging on the abusive must occur sometimes.
The ideology behind it is quite frankly, superb. Let the elderly live longer in their own homes with support. However, the support is lacking, because it is so badly underfunded, and until we, as a society, can prioritise the vulnerable and demand excellent care-standards for all, this situation will continue.
Supported Living also works reasonably well for those who are physically disabled, but need practical help either with personal care or with their chores. It has to be a much better way forward for these people than consigning them to a care home with no bright future to look forward to.
In Supported Living placements, the person with disabilities is in the driving regarding all aspects of their finances, paying their own bills and rent, and even becoming the direct employer of their carers, so applying it to people who have severe learning disabilities like Toby will always need a bit more thought, and sometimes it's the thought that goes missing.
Researchers have surveyed people about what they want, and of course, most people do want a home of their own with as much independence as possible. However nobody asks the young people like Toby, simply because they cannot talk fluently, or even if they can, they lack the capacity to understand the full implications of what Supported Living means.
However, because they have so much so-called "evidence-based research" at their disposal that this is the sort of housing model "disabled" people want, the policy makers then extrapolate the findings and apply them even to the Tobys of this world. It is so plainly wrong.
In Toby's case, with the severity of his condition, he would get 24 hour care in a Supported Living environment, but he would be living alone and isolated from the world. I've seen some of the specially designed Supported Living housing units built in the last few years by our local authority, and they are stunning, self-contained flats in a beautiful block with an impeccably landscaped garden. However, all seven residents in the building live alone, and there isn't even a communal living room. The block is staffed by 5 staff during the day, and as part of this new so-called independence, all meals must be individually cooked in the individual's own kitchen. So you can just imagine, instead of being able to produce one nice home-cooked meal for all seven residents, the staff are running up and down the stairs, in and out of the flats, trying to cook like crazy. How could you leave Toby alone in his flat with the cooker on and pots boiling while you rush to turn someone else's sausages in another flat nearby? Well you simply can't, or you shouldn't, or you have to compromise. I wondered how often these people actually managed to get decent, tasty, nutritious meals, or if they instead had to make do with quick and easy ready meals or cheese on toast most of the time. They are also living yards away from each other, but totally isolated, with chances to meet each other few and far between. Meanwhile, what of these people's mental well-being? Never seeing anyone other than a rushed-off-their-feet carer? Lonliness and isolation leads to major depressive symptoms, which can escalate into very serious mental health issues in people with learning disabilities, but unfortunately, much much harder to spot.
Believe it or not, the people imprisoned in those self-contained flats are probably the lucky ones. The others are often encouraged to take on a tenancy agreement and rent a flat wherever they can afford. They are cared for round the clock by a series of lone care workers, with no supervision, often no training, and no safety net of colleagues for the care worker to share the stresses and the frustrations or concerns.
Meanwhile, who takes overall control to manage all the medical appointments, plan his activities, ensure his finger nails are trimmed and his hair is cut? How can being cared for by one lone carer after another prevent all the little things from falling between the cracks, and how can his health and well-being be properly monitored? Most of all, how can abuse be prevented? A whole parade of carers would have uninterrupted time alone with Toby, who knows how they might really behave towards him? Some of them would also have to have access to his money too, it just is too frightening a thought to even go there as to how he may be treated.
However, I've talked my concerns over with social workers in the past, and it's all OK actually. Guess why? Apparently, there are virtually no incidences of abuse reported in Supported Living schemes. So that's alright then. Actually no, it is not. The operative word here is "reported". These vulnerable people are incapable of reporting abuse, and unless it gets reported it doesn't exist. In a meeting a couple of years ago, a very senior Social Worker who I have enormous respect for, and who is a very intelligent and caring person assured me that people in supported living arrangements are proven to be much safer from abuse. We discussed it at length, bantering it backwards and forwards, but without finding any common ground at all on this issue. Sometimes, I think that Social Workers are prevented from expressing their own views, but are expected to swallow the latest ideology hook, line and sinker, for fear of seeming to be letting the team down in some way. Either that, or those at the top really do believe it all.
Another aspect of this new style of care is the social services ideology that these adults with Learning Difficulties must "access the community" as much as possible. That means going out and about to you and me. However, the community these vulnerable people access is often hardly welcoming to them, and there is little for them to do once they are accessing it. You have almost certainly seen a lone adult looking very bored and disengaged while drinking a cup of coffee and eating a slice of cake in a coffee shop, sitting opposite someone, equally bored and dispirited, with obvious learning difficulties. You may have also seen them leave the coffee shop, a mismatched pair who obviously have nothing in common, barely talking, often with the carer striding ahead, maybe talking animatedly into their mobile phone, while the learning disabled adult shuffles some paces behind, looking lost, sad and dejected. Yes, you too have seen the brave new world of care in the community, and it makes a fallacy of the word "care". This is everything I never want for Toby.
Up until 15 or 20 years or so ago, people like Toby would live in large, Victorian style mental institutions, locked away from society. They are remembered as barbaric, cruel places where abuse was rife and the vulnerable were infantilised and treated abominably.
However, when I was a teenager, our school used to arrange for volunteers to help out at one of these places every Sunday, and I was often on the team. I remember them differently, and with fondness. Obviously, staff are all going to be on their best behaviour when there's a team of 16 year olds with their teacher on the premises, but I remember all the activities they had on offer. It was huge, like a village, but they organised a whole range of activities for their residents, football, gardening, discos, games, drama, singing... all sorts of things. Yes they were locked away, but that also meant that they never got bullied or taunted or laughed at in the street. In some ways, I think Toby would have loved some of the aspects of that large scale care, certainly due to the economies of scale they were able to offer their residents a very full and active life on some levels.
However, there were some appalling abuses going on virtually unchecked behind closed doors too, but we must never forget that the vast majority of the staff were doing their best with kindness, in exactly the same way that staff behave now.
So we moved all these people into the community, in small scale homes and units. Most of them were and still are lovely. Some though, guess what? Abuse happened. The Panorama Documentary which uncovered the vile cruelty of Winterbourne View lives with me forever.
So now, the policy makers are using abuse as another reason why these vulnerable adults should be placed in supported living isolation. Guess what? Abuse will happen, but in supported living settings we run the risk that it will happen far more invidiously, far more privately, and with the perpetrators being given free access in a way they have never have before, which means that any abuse will be harder to detect than ever.
There are some evil, vile, unpleasant, wicked people who prey on the vulnerable, and there always will be. Our vulnerable adults need all of us to work together to protect them from these vicious people, to keep them safe. Yet according to the policy makers, somehow the size of the accommodation influences whether or not abuse happens. This is dangerous thinking, and it is wrong. Somehow, wherever our vulnerable members of society live, we must do all we can to prevent the abusers working with them or gaining access to them. It's not a failsafe method, but personally I feel there more is safety in numbers, and with other residents and a whole team of staff, at least if abuse is occurring somebody might see something and blow the whistle.
I'd like to see funding pouring into research to ascertain why abuse happens, what motivates the abusers, and how we can filter out at the interview and selection process, those who are likely to be wanting care-worker jobs for all the wrong reasons. We also need to give Care-Workers a higher status with much more respect. Good ones are capable of transforming lives for the better, and there are thousands of extremely good ones, working for next to nothing while making a huge difference to the quality of life of our most vulnerable people. I would like to see these people recognised, not just by paying them more, but also by valuing them for what they do.
The other problem I faced with securing a place for Toby in the lovely home directly across the road from where we live was a funding issue. These days it all comes down to money.
The taxpayer pays for both Supported Living provision and for Residential Care Homes. However the funding for Supported Living is spread across lots of different departmental budgets, both at local and central government level, with elements of the funding coming from the benefits system too. So it isn't such a huge burden on the local social services departments, who have to carry most of the financial burden of the residential care home option.
Every social services department in the land is having to make tough choices as to where best to spend their very limited finances, so I can completely understand why they are reluctant to place people in care homes. This means that the vulnerable adults in their care may be being shoe-horned into the wrong type of accommodation simply because there is a major funding imbalance. I was often told that Care Home were more expensive by senior social workers. They are not more expensive to the taxpayer, but they are more expensive to the social services department. Equality of funding must be a priority, because decisions must be made on need rather than on cost, and to base a decision on cost when it's not even anymore expensive is quite frankly, stark raving daft.
Financially Toby's placement is safer now that he is in a care home and being funded on a "whole package" basis, because it's an "all or nothing" package, and it can't be tweaked or altered to save a few pounds here or there. Those in supported living are at the mercy of our benefit system. already under attack from Central Government, Those in a supported living situation are also at risk of having their packages cut every time their care package is reviewed, once or twice a year. It would be very easy for a care manager, hearing that a person normally sleeps right through the night, to decide to reduce the hours of the overnight carer, leaving that person alone while they are asleep. But what happens if they have to face an intruder or a house fire alone, without the cognitive skills to understand what is happening and to take action to protect themselves?
While I was working towards getting the very best for Toby, they asked me to look at some alternatives. They were each over 10 miles away, but they were Supported Living units, and therefore I was supposed to be delighted by them. They both actually sounded quite nice, but not as nice as having him on the doorstep. Some of these places actually are quite good, but that's because they have modelled themselves on the sort of care given by care homes, with small groups of adults living together and looked after by a team of care-workers, but somehow they have fiddled the finances so that it ticks the Supported Living boxes. Very clever, but if care homes work so well, why fix em if they ain't broke?
Even if they had been wonderful places, I already had my perfect solution. A beautiful, specialist care home for adults with learning disabilities, a home I knew well already, and one that I was on first name terms with many of the staff and residents. One that I had watched for 12 years, and had never witnessed anything whatsoever that rang even the tiniest of alarm bells. A home where the residents always look happy, clean, well-dressed and well-cared for, just thirty paces from my own front door. It may as well have had Toby's name already carved in a plaque above the door, I wanted my Toby as close to home, in as nice a place as possible, but still able to be a huge part of our family.
In the end I had to play my ace card, which I really had wanted to avoid having to do, but it worked. I wrote a letter for the men in grey suits who must work in the basement of our council offices to read. I explained that I had incurable cancer with a limited life-expectancy, and that I needed to live out my last years with Toby close by and still a part of our family. It's the truth, but I still felt very uneasy in spelling it out. However it worked. Within a week, Toby's place was funded. It's great to know that even the council accountants have really kind hearts.
I know he's having some happy times there, because when I ring up (which I can't seem to stop myself doing several times a day) I can often hear him in the background laughing or making his very own distinctive whooping noises, but it still feels like I've lost a limb. We're taking it a day at a time, and at the moment I'm going to visit every second day, but I don't think it's a good idea for him to come and visit us just yet, because he would think we've collected him and brought him back home for good.
We get a lovely welcome when we visit, not just from Toby, but from all the residents. They don't get many visitors in the home, and so they have all adopted WM and I as their own. If Toby gets a hug, they all want one. There is a bit of a fascination with the fact that Toby has actually got a "Mummy" at all. The residents who can talk all chat very openly about how their Mums and Dads died, and then they moved there. One resident told me that you have to have a dead mummy to live there, and another one asked me "Are you going to die soon, then?". I find it quite hilarious, luckily, considering that Toby's only had to move out because I've got incurable breast cancer. One lady was chatting on about her parents, and I asked her if she missed them. She said, "No, course I don't miss them, they're dead, so they're gone". The matter of factness that sometimes accompanies learning disability can sometimes just break your heart.
Their openness is also very reassuring. They all seem to want to take Toby under their wing, and it's obvious that they are looking out for him, just as they clearly look for each other. They also talk about how lovely the home is, and how kind the staff are, all things that you just hope against hope are true even when you're not there to see what goes on, but it's clear that everyone is well cared for, and they all seem to have a very relaxed, happy rapport with the staff.
I'm trying to get a new perspective on Toby's move. Instead of comparing it to how his life was a couple of weeks ago, still living at home, I'm trying to compare his arrival in new circumstances with the experiences of his new house-mates. It must be so awful arriving somewhere completely new and alien, within hours of losing a parent. These people don't have the understanding or the awareness that most of us have, they must be so bewildered and bereaved, but without the capacity to be comforted and reassured. It must be so frightening, and so desperately sad too.
By comparison, Toby's had the opportunity to spend a lot of time there over the past few weeks, staff at his college have supported him in buying things for his room and decorating it with lots of photos and things he likes, he knows we live directly opposite and that we'll see a lot of him, and he is still in exactly the same community he grew up in. Yet it's still hard, and he is still bewildered and confused, so goodness knows how hard it must be for most people in his situation.
I had a really tough time in getting our local authority to agree to fund his place there. The current sociological ideology is that all adults with learning disabilities must be placed in a new type of housing called "Supported Living", and the very concept horrifies me, along with thousands of other parents in my situation.
The sad thing is that nearly every individual you come across within Social Services is coming from a good place in their hearts, and they are striving to do their best. They must often share the same frustrations we parents feel, and too often, they get cast in the role of the "bad guys". The real bad guys are the ones that simply don't pump enough money, resources, thought and infrastructure into the system they have to work within. They have too many vulnerable people to support, with nowhere near enough funding. So it's often the Social Workers themselves who have to be the messenger, the one who says no to something that the family feel is totally essential. There are no winners in this awful situation, the Social Worker feels dreadful and the family too.
We were very lucky, we had a very pro-active Social Worker who understood immediately why I wanted what I did. Her honesty really helped make the whole process easier, she was very upfront and told me not to get my hopes up, and explained all the hurdles ahead, but she promised she'd try. Somehow she helped to make it happen. I'd love to buy her chocolates, flowers and champagne as a Thank-you, but sadly, I'm not allowed to. Social Workers have to work within such restrictively tight rules and regulations, that even the tiniest box of chocolates is seen as bribery and corruption, and could lose her her job.
In the same way as many Statutory organisiations, the individuals within the system are fighting too, to somehow make sense out of a framework that simply cannot work. They are fighting to make a difference to people like Toby, and so often, despite their very best efforts, nothing changes. The policy makers base their decisions on evidence-based research, but sometimes this means taking a broad-based stroke and applying it to everyone, without the flexibility to see that one size really often doesn't fit all. At individual Local Authority level, sometimes this ideological thinking is adopted too quickly, or without the financial resources to really make it happen the way it should, and then the Social Workers have to deliver a watered-down version of something that could have been really good, but actually doesn't work that well for many of their clients at all. They can see this. The clients can see this, and their families can see this. Yet it's always the poor Social Workers that get the blame.
The ideas behind Supported Living come from a good place, but are being interpreted too widely, and much too quickly, with little long-term thought seemingly being applied. Basically, the idea is that everyone deserves to live autonomously in their own home, with carers coming to them and doing the things with them that they need to be done or that they want to do. It's a fabulous idea if you apply it to the frail elderly, because it means that they can keep their independence and still maintain their own home. However, even with the elderly, the way it is being administered leaves a lot to be desired - a lot of them are trapped in bed until somebody arrives, flustered, overworked and running late, with a 15 minute window of time to get them out of bed, toileted, washed and breakfasted before moving on to their next frail client. The poor care workers don't have time to do what these old people really want, to stop and chat and pass the time of day. They are so time-pressured, and they are working alone and unsupervised, so with the best will in the world, impatience verging on the abusive must occur sometimes.
The ideology behind it is quite frankly, superb. Let the elderly live longer in their own homes with support. However, the support is lacking, because it is so badly underfunded, and until we, as a society, can prioritise the vulnerable and demand excellent care-standards for all, this situation will continue.
Supported Living also works reasonably well for those who are physically disabled, but need practical help either with personal care or with their chores. It has to be a much better way forward for these people than consigning them to a care home with no bright future to look forward to.
In Supported Living placements, the person with disabilities is in the driving regarding all aspects of their finances, paying their own bills and rent, and even becoming the direct employer of their carers, so applying it to people who have severe learning disabilities like Toby will always need a bit more thought, and sometimes it's the thought that goes missing.
Researchers have surveyed people about what they want, and of course, most people do want a home of their own with as much independence as possible. However nobody asks the young people like Toby, simply because they cannot talk fluently, or even if they can, they lack the capacity to understand the full implications of what Supported Living means.
However, because they have so much so-called "evidence-based research" at their disposal that this is the sort of housing model "disabled" people want, the policy makers then extrapolate the findings and apply them even to the Tobys of this world. It is so plainly wrong.
In Toby's case, with the severity of his condition, he would get 24 hour care in a Supported Living environment, but he would be living alone and isolated from the world. I've seen some of the specially designed Supported Living housing units built in the last few years by our local authority, and they are stunning, self-contained flats in a beautiful block with an impeccably landscaped garden. However, all seven residents in the building live alone, and there isn't even a communal living room. The block is staffed by 5 staff during the day, and as part of this new so-called independence, all meals must be individually cooked in the individual's own kitchen. So you can just imagine, instead of being able to produce one nice home-cooked meal for all seven residents, the staff are running up and down the stairs, in and out of the flats, trying to cook like crazy. How could you leave Toby alone in his flat with the cooker on and pots boiling while you rush to turn someone else's sausages in another flat nearby? Well you simply can't, or you shouldn't, or you have to compromise. I wondered how often these people actually managed to get decent, tasty, nutritious meals, or if they instead had to make do with quick and easy ready meals or cheese on toast most of the time. They are also living yards away from each other, but totally isolated, with chances to meet each other few and far between. Meanwhile, what of these people's mental well-being? Never seeing anyone other than a rushed-off-their-feet carer? Lonliness and isolation leads to major depressive symptoms, which can escalate into very serious mental health issues in people with learning disabilities, but unfortunately, much much harder to spot.
Believe it or not, the people imprisoned in those self-contained flats are probably the lucky ones. The others are often encouraged to take on a tenancy agreement and rent a flat wherever they can afford. They are cared for round the clock by a series of lone care workers, with no supervision, often no training, and no safety net of colleagues for the care worker to share the stresses and the frustrations or concerns.
Meanwhile, who takes overall control to manage all the medical appointments, plan his activities, ensure his finger nails are trimmed and his hair is cut? How can being cared for by one lone carer after another prevent all the little things from falling between the cracks, and how can his health and well-being be properly monitored? Most of all, how can abuse be prevented? A whole parade of carers would have uninterrupted time alone with Toby, who knows how they might really behave towards him? Some of them would also have to have access to his money too, it just is too frightening a thought to even go there as to how he may be treated.
However, I've talked my concerns over with social workers in the past, and it's all OK actually. Guess why? Apparently, there are virtually no incidences of abuse reported in Supported Living schemes. So that's alright then. Actually no, it is not. The operative word here is "reported". These vulnerable people are incapable of reporting abuse, and unless it gets reported it doesn't exist. In a meeting a couple of years ago, a very senior Social Worker who I have enormous respect for, and who is a very intelligent and caring person assured me that people in supported living arrangements are proven to be much safer from abuse. We discussed it at length, bantering it backwards and forwards, but without finding any common ground at all on this issue. Sometimes, I think that Social Workers are prevented from expressing their own views, but are expected to swallow the latest ideology hook, line and sinker, for fear of seeming to be letting the team down in some way. Either that, or those at the top really do believe it all.
Another aspect of this new style of care is the social services ideology that these adults with Learning Difficulties must "access the community" as much as possible. That means going out and about to you and me. However, the community these vulnerable people access is often hardly welcoming to them, and there is little for them to do once they are accessing it. You have almost certainly seen a lone adult looking very bored and disengaged while drinking a cup of coffee and eating a slice of cake in a coffee shop, sitting opposite someone, equally bored and dispirited, with obvious learning difficulties. You may have also seen them leave the coffee shop, a mismatched pair who obviously have nothing in common, barely talking, often with the carer striding ahead, maybe talking animatedly into their mobile phone, while the learning disabled adult shuffles some paces behind, looking lost, sad and dejected. Yes, you too have seen the brave new world of care in the community, and it makes a fallacy of the word "care". This is everything I never want for Toby.
Up until 15 or 20 years or so ago, people like Toby would live in large, Victorian style mental institutions, locked away from society. They are remembered as barbaric, cruel places where abuse was rife and the vulnerable were infantilised and treated abominably.
However, when I was a teenager, our school used to arrange for volunteers to help out at one of these places every Sunday, and I was often on the team. I remember them differently, and with fondness. Obviously, staff are all going to be on their best behaviour when there's a team of 16 year olds with their teacher on the premises, but I remember all the activities they had on offer. It was huge, like a village, but they organised a whole range of activities for their residents, football, gardening, discos, games, drama, singing... all sorts of things. Yes they were locked away, but that also meant that they never got bullied or taunted or laughed at in the street. In some ways, I think Toby would have loved some of the aspects of that large scale care, certainly due to the economies of scale they were able to offer their residents a very full and active life on some levels.
However, there were some appalling abuses going on virtually unchecked behind closed doors too, but we must never forget that the vast majority of the staff were doing their best with kindness, in exactly the same way that staff behave now.
So we moved all these people into the community, in small scale homes and units. Most of them were and still are lovely. Some though, guess what? Abuse happened. The Panorama Documentary which uncovered the vile cruelty of Winterbourne View lives with me forever.
So now, the policy makers are using abuse as another reason why these vulnerable adults should be placed in supported living isolation. Guess what? Abuse will happen, but in supported living settings we run the risk that it will happen far more invidiously, far more privately, and with the perpetrators being given free access in a way they have never have before, which means that any abuse will be harder to detect than ever.
There are some evil, vile, unpleasant, wicked people who prey on the vulnerable, and there always will be. Our vulnerable adults need all of us to work together to protect them from these vicious people, to keep them safe. Yet according to the policy makers, somehow the size of the accommodation influences whether or not abuse happens. This is dangerous thinking, and it is wrong. Somehow, wherever our vulnerable members of society live, we must do all we can to prevent the abusers working with them or gaining access to them. It's not a failsafe method, but personally I feel there more is safety in numbers, and with other residents and a whole team of staff, at least if abuse is occurring somebody might see something and blow the whistle.
I'd like to see funding pouring into research to ascertain why abuse happens, what motivates the abusers, and how we can filter out at the interview and selection process, those who are likely to be wanting care-worker jobs for all the wrong reasons. We also need to give Care-Workers a higher status with much more respect. Good ones are capable of transforming lives for the better, and there are thousands of extremely good ones, working for next to nothing while making a huge difference to the quality of life of our most vulnerable people. I would like to see these people recognised, not just by paying them more, but also by valuing them for what they do.
The other problem I faced with securing a place for Toby in the lovely home directly across the road from where we live was a funding issue. These days it all comes down to money.
The taxpayer pays for both Supported Living provision and for Residential Care Homes. However the funding for Supported Living is spread across lots of different departmental budgets, both at local and central government level, with elements of the funding coming from the benefits system too. So it isn't such a huge burden on the local social services departments, who have to carry most of the financial burden of the residential care home option.
Every social services department in the land is having to make tough choices as to where best to spend their very limited finances, so I can completely understand why they are reluctant to place people in care homes. This means that the vulnerable adults in their care may be being shoe-horned into the wrong type of accommodation simply because there is a major funding imbalance. I was often told that Care Home were more expensive by senior social workers. They are not more expensive to the taxpayer, but they are more expensive to the social services department. Equality of funding must be a priority, because decisions must be made on need rather than on cost, and to base a decision on cost when it's not even anymore expensive is quite frankly, stark raving daft.
Financially Toby's placement is safer now that he is in a care home and being funded on a "whole package" basis, because it's an "all or nothing" package, and it can't be tweaked or altered to save a few pounds here or there. Those in supported living are at the mercy of our benefit system. already under attack from Central Government, Those in a supported living situation are also at risk of having their packages cut every time their care package is reviewed, once or twice a year. It would be very easy for a care manager, hearing that a person normally sleeps right through the night, to decide to reduce the hours of the overnight carer, leaving that person alone while they are asleep. But what happens if they have to face an intruder or a house fire alone, without the cognitive skills to understand what is happening and to take action to protect themselves?
While I was working towards getting the very best for Toby, they asked me to look at some alternatives. They were each over 10 miles away, but they were Supported Living units, and therefore I was supposed to be delighted by them. They both actually sounded quite nice, but not as nice as having him on the doorstep. Some of these places actually are quite good, but that's because they have modelled themselves on the sort of care given by care homes, with small groups of adults living together and looked after by a team of care-workers, but somehow they have fiddled the finances so that it ticks the Supported Living boxes. Very clever, but if care homes work so well, why fix em if they ain't broke?
Even if they had been wonderful places, I already had my perfect solution. A beautiful, specialist care home for adults with learning disabilities, a home I knew well already, and one that I was on first name terms with many of the staff and residents. One that I had watched for 12 years, and had never witnessed anything whatsoever that rang even the tiniest of alarm bells. A home where the residents always look happy, clean, well-dressed and well-cared for, just thirty paces from my own front door. It may as well have had Toby's name already carved in a plaque above the door, I wanted my Toby as close to home, in as nice a place as possible, but still able to be a huge part of our family.
In the end I had to play my ace card, which I really had wanted to avoid having to do, but it worked. I wrote a letter for the men in grey suits who must work in the basement of our council offices to read. I explained that I had incurable cancer with a limited life-expectancy, and that I needed to live out my last years with Toby close by and still a part of our family. It's the truth, but I still felt very uneasy in spelling it out. However it worked. Within a week, Toby's place was funded. It's great to know that even the council accountants have really kind hearts.
Wednesday, 19 February 2014
Coke Floats & Chemo: Toby's New Home
Coke Floats & Chemo: Toby's New Home: Toby left home an hour ago, and it feels so final, and so sad, but I know in my head I'm doing the absolute right thing for him, I just ...
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