Saturday 21 June 2014
Coke Floats & Chemo: The book wot I wrote
Coke Floats & Chemo: The book wot I wrote: It's a strange old feeling writing a book. Even two weeks after publication of my book, "The Special Parent's Handbook", i...
Friday 20 June 2014
The book wot I wrote
It's a strange old feeling writing a book. Even two weeks after publication of my book, "The Special Parent's Handbook", it's all still quite surreal to pick up a paperback and see your name on the front and your photo on the back. I'm still getting used to it all.
People are being so kind though. I've had dozens of messages, being told that reading the book has already made things easier in homes all over the place, hearing that my words have given other parents the confidence to stand up to professionals, or to trust their own instincts, or to chill a little and have more fun.... really lovely things to say. Clinical staff have contacted me to say they've learnt loads too, and that they are approaching their jobs differently as a result. Sometimes, the lovely people who have bought my book even send me a photo of it once it gets to their house. Here are some of them.
If the print is too small to see, here are some of the lovely things they said about the book:
"Painfully honest", "Deeply affecting", "The chapters covering each area are excellent", "a fantastic job" "fills an enormous gap in the market", "an invaluable resource", "offers tremendous insights".
I really couldn't have asked for any more.
So, that got me thinking. The nurse who wrote the review is obviously one of those who "gets it", but she is also the mother of a special needs son, so it's easy to see why she did. I wrote it for people like her, for parents, and for professionals, who care for disabled or seriously ill children, I didn't write it for journalists. I wrote it for parents, struggling to come to terms with how, in a moment, their whole family life has irrevocably changed because their child has been given a devastating diagnosis. I wrote it for the professionals who work with these families, so they will understand some of the relentless heartache these families bear. I wrote it for my younger self, when I was frightened, isolated, exhausted and bewildered, and didn't think I'd be up to the job of caring properly for my son, Toby, and later, his brother and sister, when they too, were diagnosed with various conditions and illnesses.
I wrote about how to cope with stares in the street, how to make sure none of your children are left out and there's enough love and support to wrap around the whole family, how to cope with the multidisciplinary meetings, and the never-ending mountains paperwork, and the constant battles to make sure your child gets the help and care they really need. I wrote about everything I knew, everything I'd learnt, everything I hoped might make somebody's life just that little bit easier. At the end of every chapter, I packed in Tips, Tricks and Strategies, all the crazy, off-the-wall solutions to problems our family invented as we muddled along. There are bits in the book that make difficult reading, because they are so raw and painful, but equally, there are other bits that will make people snort with laughter.
So, instead of trying to court the journalists and the national press, I need to find the people who really matter, the parents who are having a hard time right now, and ask everyone I know to help me find them.
I have a Facebook Page. If you are on Facebook, it would be great if you could like it. It may mean that someone in your Facebook circle who really needs to know they are not alone in all this might also find out about my book just at a time they need it the most. Here's the FB page link: http://on.fb.me/1juTska
I'm also writing to every hospital, but it all takes time. I'm writing to every charity I can think of, and every special school, but it will take months. If anybody has any ideas of who else I should be writing to, please let me know.
I've already had one major success. I sent Great Ormond Street Hospital a copy of my book, and I got a lovely letter back from Liz Morgan, their Chief Nurse, who called it "An excellent reference guide for any parent". Jim Blair, their Nurse Consultant for Learning Disabilities, is also championing it. So far, they have ordered 30 copies, one for every ward, so that every single parent with a child in GOSH can read it. I spent a whole lovely day there, and had a really warm welcome and met some really genuine people. I was there to run sessions with their staff and parents about bridging the "them and us" communication gap. The sessions, too, were simply great, everyone was just fabulous, and committed to working together to make things easier all round
.
I met their Head of Operations, who was every bit as behind the book as Liz and Jim are; he has agreed to stock copies of "The Special Parent's Handbook" in the hospital's own shop from Monday, with £3.50 from every book sale going toward Jim Blair's innovative work to improve the care given to children with Learning Disabilities and their parents. Even better than that, the book is now going to be where there are also parents and staff who really need to know about it. I've just got to do more of this, getting the book to the heart of where it belongs, up and down the country.
Three weeks ago I was nervous about the book being published. Suddenly, it was the eleventh hour, and it was too late to unwrite it, Amazon already held copies. What if nobody liked it? What if it's rubbish? What if I've been too open? It's still a bit surreal that total strangers are reading about our family life, warts and all, but now I have the world's most famous children's hospital cheering on the book on my behalf and I am humbled beyond belief.
This blog used to be about my breast cancer. Then it was about the stage play. You have been with me when we discovered the cancer had spread to my spine, and that I had lost the battle with the big "C" to some extent. Yes it's incurable, but that doesn't mean I can't carry on living. Who knows how long I'll be here, now that I'm Stage IV cancer it's probably not as long as I would have wanted, but that doesn't matter. What matters is that every day counts.
Over the past year or so, since we nearly lost Toby when he was seriously ill last summer, the blog has become much less about cancer and much more about my children, learning disability, writing a book and all sorts of other things. I think it's time to step back from this Coke Floats & Chemo blog, and concentrate all my efforts for the time being into making sure the book gets into the right hands.
I'll still be writing, though. I've now got a website with a blog on it too, and it would be lovely if you can join me there. The format is different, on the right hand side there is a list marked "Posts", that's really the blog. It's got some very thought-provoking articles on it already, and you can also see some adorable photos of the children when they were growing up. Here's the website link: www.yvonnenewbold.com
So, for now, it's see you soon, not goodbye, because I may well come back and write like crazy on this blog too. Meanwhile, it would be lovely if you come and say hello to me on the new blog. For the moment, though, I can't stretch myself too thin, and also for the moment, the cancer is in a very good place, filed at the back of my mind while I get on with living.
If you'd like to buy the book and you can't get to Great Ormond Street easily, it's available from Amazon, both paperback and on Kindle. Here's the link to the Amazon Page:
And just for good measure, one last photo, to quote Eric Morecambe, of the book wot I wrote.
People are being so kind though. I've had dozens of messages, being told that reading the book has already made things easier in homes all over the place, hearing that my words have given other parents the confidence to stand up to professionals, or to trust their own instincts, or to chill a little and have more fun.... really lovely things to say. Clinical staff have contacted me to say they've learnt loads too, and that they are approaching their jobs differently as a result. Sometimes, the lovely people who have bought my book even send me a photo of it once it gets to their house. Here are some of them.
My book does seem to be having an effect on people when they read it. The thing is, I'm far too close to it all to be able to understand what effect it's having or why. Maybe I should just relax and be pleased that it's making some sort of difference, even if I can't fathom out how it's happening.
The PR side of things is painstakingly slow, and never ending. I have lists of people to email about my book, then sub-lists, then category sub-sub-lists, it gets to the point where even I don't understand them.
However, I have had one simply marvellous review, which totally made my week last week, and it's from a very respected Magazine indeed. The Nursing Times, no less. It was beyond fabulous, so great, here it is again.
If the print is too small to see, here are some of the lovely things they said about the book:
"Painfully honest", "Deeply affecting", "The chapters covering each area are excellent", "a fantastic job" "fills an enormous gap in the market", "an invaluable resource", "offers tremendous insights".
I really couldn't have asked for any more.
So, that got me thinking. The nurse who wrote the review is obviously one of those who "gets it", but she is also the mother of a special needs son, so it's easy to see why she did. I wrote it for people like her, for parents, and for professionals, who care for disabled or seriously ill children, I didn't write it for journalists. I wrote it for parents, struggling to come to terms with how, in a moment, their whole family life has irrevocably changed because their child has been given a devastating diagnosis. I wrote it for the professionals who work with these families, so they will understand some of the relentless heartache these families bear. I wrote it for my younger self, when I was frightened, isolated, exhausted and bewildered, and didn't think I'd be up to the job of caring properly for my son, Toby, and later, his brother and sister, when they too, were diagnosed with various conditions and illnesses.
I wrote about how to cope with stares in the street, how to make sure none of your children are left out and there's enough love and support to wrap around the whole family, how to cope with the multidisciplinary meetings, and the never-ending mountains paperwork, and the constant battles to make sure your child gets the help and care they really need. I wrote about everything I knew, everything I'd learnt, everything I hoped might make somebody's life just that little bit easier. At the end of every chapter, I packed in Tips, Tricks and Strategies, all the crazy, off-the-wall solutions to problems our family invented as we muddled along. There are bits in the book that make difficult reading, because they are so raw and painful, but equally, there are other bits that will make people snort with laughter.
So, instead of trying to court the journalists and the national press, I need to find the people who really matter, the parents who are having a hard time right now, and ask everyone I know to help me find them.
I have a Facebook Page. If you are on Facebook, it would be great if you could like it. It may mean that someone in your Facebook circle who really needs to know they are not alone in all this might also find out about my book just at a time they need it the most. Here's the FB page link: http://on.fb.me/1juTska
I'm also writing to every hospital, but it all takes time. I'm writing to every charity I can think of, and every special school, but it will take months. If anybody has any ideas of who else I should be writing to, please let me know.
I've already had one major success. I sent Great Ormond Street Hospital a copy of my book, and I got a lovely letter back from Liz Morgan, their Chief Nurse, who called it "An excellent reference guide for any parent". Jim Blair, their Nurse Consultant for Learning Disabilities, is also championing it. So far, they have ordered 30 copies, one for every ward, so that every single parent with a child in GOSH can read it. I spent a whole lovely day there, and had a really warm welcome and met some really genuine people. I was there to run sessions with their staff and parents about bridging the "them and us" communication gap. The sessions, too, were simply great, everyone was just fabulous, and committed to working together to make things easier all round
.
I met their Head of Operations, who was every bit as behind the book as Liz and Jim are; he has agreed to stock copies of "The Special Parent's Handbook" in the hospital's own shop from Monday, with £3.50 from every book sale going toward Jim Blair's innovative work to improve the care given to children with Learning Disabilities and their parents. Even better than that, the book is now going to be where there are also parents and staff who really need to know about it. I've just got to do more of this, getting the book to the heart of where it belongs, up and down the country.
Three weeks ago I was nervous about the book being published. Suddenly, it was the eleventh hour, and it was too late to unwrite it, Amazon already held copies. What if nobody liked it? What if it's rubbish? What if I've been too open? It's still a bit surreal that total strangers are reading about our family life, warts and all, but now I have the world's most famous children's hospital cheering on the book on my behalf and I am humbled beyond belief.
This blog used to be about my breast cancer. Then it was about the stage play. You have been with me when we discovered the cancer had spread to my spine, and that I had lost the battle with the big "C" to some extent. Yes it's incurable, but that doesn't mean I can't carry on living. Who knows how long I'll be here, now that I'm Stage IV cancer it's probably not as long as I would have wanted, but that doesn't matter. What matters is that every day counts.
Over the past year or so, since we nearly lost Toby when he was seriously ill last summer, the blog has become much less about cancer and much more about my children, learning disability, writing a book and all sorts of other things. I think it's time to step back from this Coke Floats & Chemo blog, and concentrate all my efforts for the time being into making sure the book gets into the right hands.
I'll still be writing, though. I've now got a website with a blog on it too, and it would be lovely if you can join me there. The format is different, on the right hand side there is a list marked "Posts", that's really the blog. It's got some very thought-provoking articles on it already, and you can also see some adorable photos of the children when they were growing up. Here's the website link: www.yvonnenewbold.com
So, for now, it's see you soon, not goodbye, because I may well come back and write like crazy on this blog too. Meanwhile, it would be lovely if you come and say hello to me on the new blog. For the moment, though, I can't stretch myself too thin, and also for the moment, the cancer is in a very good place, filed at the back of my mind while I get on with living.
If you'd like to buy the book and you can't get to Great Ormond Street easily, it's available from Amazon, both paperback and on Kindle. Here's the link to the Amazon Page:
If no link appears it may be due to your AdBlock settings
And just for good measure, one last photo, to quote Eric Morecambe, of the book wot I wrote.
Monday 5 May 2014
Coke Floats & Chemo: Dancing not Drowning
Coke Floats & Chemo: Dancing not Drowning: Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writi...
Dancing not Drowning
Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writing a book if nobody reads it, not because it might be a rubbish book but because they never got to know about it at all. So it's the PR, the internet marketing, the social media presence that's where the real work happens, and there's no other option but to jump straight into the deep end and hope to goodness that you don't get drowned.
There's still so much to do, and I've barely started the whole publicity and internet marketing stuff yet, and already the book is making loads of pre-order sales on Amazon. They stock 20 million books, and even though my book isn't actually being launched until the 2nd June, pre-orders are selling so well that it's spent a lot of time in the top 10,000 most popular books, and it even got to rank at being the 2,740th most popular book on the whole of Amazon for a few hours the other day! OK so it's not in the top ten yet, but I was still leaping up and down with excitement. Today, I even got an email from Amazon to order a consignment of books from me, and I wanted to spend the whole morning singing and dancing about it.
It's also lovely to have an Amazon page and an Author's page - I can't quite believe how much fun this can be sometimes! If you want to have a look, here's the link: The Special Parent's Handbook Amazon Page.
Oooh, I've just realised that the past few days of tearing my hair out over websites and technology must have paid off - I've never before had so many links, a You Tube video AND an embedded tweet in a blog post before. Best of all, I haven't mentioned cancer once, even though it's the horrid PET scan day tomorrow. I'd better go off and dance around my kitchen again in celebration!
It's fun though, but very full on. I did nearly drown for several days when I was trying to create a website from scratch. Trying to get Wordpress.org and the website hosting service to link up and make friends was far more than my little brain could cope with, and I was climbing walls in tearful frustration for days. Then I found the answer - they had sent me an email days beforehand which I had thought was spam because they unhelpfully didn't mention either of their organisations' names in the email title. With 21st century technology, it's always those tiny little things that just don't quite meet up that completely that do my head in.
So, I've now got the beginnings of a website. Not the best one in the world, but I've never been prouder of anything because it really does represent blood, sweat, tears and goodness knows what else. It's also a "work-in-progress" - there is stacks of room for improvement, but if you'd like to see it before it becomes simply marvellous (ha ha ha) here's the link :The Special Parent's Handbook Website.
I've also set up a Facebook Page, again called The Special Parent's Handbook, and here's the link to the Facebook Page.
Then yesterday I did another You Tube video. Hilarious. Not. It took about 8 takes with WM creatively constructing another tripod from all sorts of things around the house. if you haven't seen the blog post about his previous attempt here is it: How Not to Film Videos .
It's worth a peep if only to see the photo of the bonkers tripod itself. We managed it in only 8 takes this time, mostly techno nonsense but Take Number 7 is a classic - just as I was saying goodbye after a word-perfect performance, the best one I'll probably ever manage, literally 2 seconds before the very end, Adam forgot we'd told him what we were doing and he barges in through the door only wearing pyjama bottoms and calling "Mum, where are you?" rather loudly. We have it on camera, including the bit with me failing to maintain my professional dignity and losing it completely. WM and Francesca are threatening to post just those few seconds on Facebook. It really is very funny now, but I couldn't find a funny side at the time.
In the video I read a bit of the book, an extract which looks at how frustrating it can be when you are a medically-savvy parent of a complex needs child during the Doctor's Round on a hospital, when it's sometimes hard to have your concerns taken seriously and listened to properly.
It's worth a peep if only to see the photo of the bonkers tripod itself. We managed it in only 8 takes this time, mostly techno nonsense but Take Number 7 is a classic - just as I was saying goodbye after a word-perfect performance, the best one I'll probably ever manage, literally 2 seconds before the very end, Adam forgot we'd told him what we were doing and he barges in through the door only wearing pyjama bottoms and calling "Mum, where are you?" rather loudly. We have it on camera, including the bit with me failing to maintain my professional dignity and losing it completely. WM and Francesca are threatening to post just those few seconds on Facebook. It really is very funny now, but I couldn't find a funny side at the time.
In the video I read a bit of the book, an extract which looks at how frustrating it can be when you are a medically-savvy parent of a complex needs child during the Doctor's Round on a hospital, when it's sometimes hard to have your concerns taken seriously and listened to properly.
Me reading from The Special Parent's Handbook
The best bit of the whole new world of publicising the book is the amount of goodwill and friendship there is online. People I've never met are banging the drum for me, holding my hand through all the stuff I'm such a novice about, and the warmth and enthusiasm for the project is simply astounding.
I can barely bring myself to watch the video, I just cringe at both the way I look and sound, but then one completely lovely "virtual friend" sent me this tweet last night which I absolutely love to bits!
@SpParentsHbook definitely cute.. and cuddly.. I wanted to get a hug from you :-) You looked like just the mum everyone would want to have x
— Marie Ennis-O'Connor (@JBBC) May 5, 2014
There's still so much to do, and I've barely started the whole publicity and internet marketing stuff yet, and already the book is making loads of pre-order sales on Amazon. They stock 20 million books, and even though my book isn't actually being launched until the 2nd June, pre-orders are selling so well that it's spent a lot of time in the top 10,000 most popular books, and it even got to rank at being the 2,740th most popular book on the whole of Amazon for a few hours the other day! OK so it's not in the top ten yet, but I was still leaping up and down with excitement. Today, I even got an email from Amazon to order a consignment of books from me, and I wanted to spend the whole morning singing and dancing about it.
It's also lovely to have an Amazon page and an Author's page - I can't quite believe how much fun this can be sometimes! If you want to have a look, here's the link: The Special Parent's Handbook Amazon Page.
Oooh, I've just realised that the past few days of tearing my hair out over websites and technology must have paid off - I've never before had so many links, a You Tube video AND an embedded tweet in a blog post before. Best of all, I haven't mentioned cancer once, even though it's the horrid PET scan day tomorrow. I'd better go off and dance around my kitchen again in celebration!
Friday 11 April 2014
Coke Floats & Chemo: The Book Cover Preview
Coke Floats & Chemo: The Book Cover Preview: The book cover is designed, and the entire book thing suddenly feels a whole load more real. It will be on sale in about 8 - 10 weeks, with ...
The Book Cover Preview
The book cover is designed, and the entire book thing suddenly feels a whole load more real. It will be on sale in about 8 - 10 weeks, with the first advance copies in my hand in about 4 week's time. Many thanks to the photographers, Richard Bloomfield who took the shot of Toby in 1996, and Rachel Raphael who took the other two gorgeous photos. The impression we've tried to create is to show that, against all the odds, Toby made it all the way through childhood. Even though it was sticky, he was and still is happy. The shot of him covering my face is to demonstrate that he can now do some of it without me, and that's how it should be. Independence is what every parent wants for their children, even if Toby, with all his difficulties, is developing a different version of independence.
Francesca and Adam, whilst very happy to be included in the book itself, were absolutely adamant that they were not going to have their photos on the cover! It's such a shame, because they are both every bit as gorgeous looking as their brother, Toby! Hey ho, never mind! Maybe the next one, eh?!
Francesca and Adam, whilst very happy to be included in the book itself, were absolutely adamant that they were not going to have their photos on the cover! It's such a shame, because they are both every bit as gorgeous looking as their brother, Toby! Hey ho, never mind! Maybe the next one, eh?!
Tuesday 1 April 2014
Coke Floats & Chemo: Being a cancer patient
Coke Floats & Chemo: Being a cancer patient: Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right imp...
Being a cancer patient
Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place.
Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch.
I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all.
It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears.
Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again. Maybe I've just got a low pain threshold.
Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment.
Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn.
Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them.
It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest.
I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.
Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die.
Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.
I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.
Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch.
I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all.
It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears.
Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again. Maybe I've just got a low pain threshold.
Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment.
Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn.
Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them.
It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest.
I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.
Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die.
Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.
I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.
If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:
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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 ...
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 need time to allow my heart to catch up and see sense too.
Toby is my delightfully funny, mischievous, boisterous, best-hugger-in-the-world 19 year old son, who was born with disabilities so rare that he is a complete one-off, the only person in the world with his particular condition. In the early days, keeping him alive was a round-the-clock struggle, his prognosis was extremely poor and we spent most of his first 6 years in hospital with him seriously ill, and with me sleeping on a camp-bed next to his bed for weeks, and sometimes months on end. His medical care was full-on, he needed 24/7 treatment to keep him from dying, and in those early years we had 38 separate crisis close-calls when he wasn't expected to last more than a few hours. He certainly was never expected to make it all the way to adulthood, and I am so proud of him and so thrilled that he has survived against the odds, but in so doing, it does bring a different set of problems and heartbreaks too.
Toby has the intellectual equivalent capacity of a mainstream 2 year old, and we now know he is severely autistic too. He cannot swallow properly so until relatively recently he was entirely fed via a gastrostomy, and now that he can eat and drink, everything has to be pureed, there are more foods he has to avoid than he can eat, and we live with an extremely high risk of him choking or aspirating food-matter into his lungs. He is also doubly-incontinent, and he has challenging behaviour too, as well as still needing a lot of medical treatment and care. He can walk, which was a joy we never expected, but he is wobbly and unsteady so he also uses a wheelchair, and his speech is limited to one or two word sentences of a very limited vocabulary. None of this gives a real picture of the whirlwind of energy and tenacity and joyousness that is Toby, you really would have to meet him to understand just how very special he is.
So, he always has and always will need total 24-hour supervision, both from a medical and a behavioural point of view. He has absolutely no sense of danger, and this, coupled with a mischievous curiosity and an ability to wreck a room in 12 seconds, means that he can also be exhausting, and nothing else can get done if you're alone with him.
I've always known that, if Toby made it to adulthood, I would want him to be settled somewhere else by the time he was into his middle-twenties, simply because I've seen other adults with learning disabilities have to cope with losing their parents once they are well into their fifties, and then also cope with being springboarded into a completely alien environment with no one able to help them understand what's happening and to help them get used to their new home.
So Toby moving out when he's only a couple of months short of his 20th birthday isn't so far away from the plan I'd always had for him. It was always going to be difficult; Toby and I have been through so much together in his early life that we are closer than close, it's almost that we are a part of one another. What I think is really hard is that my cancer prognosis has taken away the choice of when we do this, and there is a real sense of urgency for a number of reasons.
Firstly, although I am doing really well on treatment and I may well live for several years, the fact is that my cancer is incurable, and I equally well may deteriorate and die relatively quickly. If that happened and Toby was living at home, it would be catastrophic for him, losing his mum, and having to get used to a new place to live in one fell swoop. Finding good places for people like Toby is like finding a needle in a haystack, and with the best will in the world from even the best social workers in the land, in an emergency situation like this, he could be catapulted into a really unsuitable environment without me around to jump up and down and insist on the best.
Secondly, cancer thrives on stress. Stress eats away at the capacity of your immune system to keep the cancer under control, and keeping cancer under control is vital if I am to live for as many years as I possibly can. I hate to say it, but Toby living at home is not good for my stress levels. We live on tenterhooks waiting for his next meltdown, or what havoc he will create. Then there is the constant stress of the next chest infection that may bring him down so low that we may lose him - always checking his breathing, always on edge listening for the tell-tale tone of a slight cough, always worried that he may fall or put something in his mouth that will choke him.... the list goes on and on. Then there is the stress that changing nappies and spoon-feeding a young man also brings, and ensuring he gets all his prescribed medicines on time and that they aren't causing him side-effects, it's all the stress of trying to second-guess how somebody else is feeling when they have no way of telling you themselves.
Thirdly, since I've had cancer, my energy levels and coping resources just aren't as great as they once were. The bottom line is that I'm just not strong enough to look after him anymore, and that really hurts. It feels like he is being jettisoned out of the hot-air balloon so that I can live a bit longer, as if I have had to make a choice between us, and that I've chosen me rather than him. That makes me feel very selfish and very guilty, and it hurts like hell.
The other thing that I'm acutely aware of is that, after all these years caring for Toby, my time will be significantly freed up, and I will be able to do things spontaneously with the rest of the family in a way that Toby's difficult care regime has previously made difficult. This is just piling on the guilt sky-high, that I may actually enjoy a different level of freedom while he has been pushed out. Its all adding up to be the biggest guilt-trip I've ever felt. I really need to find a way to reconcile these dichotomies, and move past these negative feelings as quickly as I can,
I owed it to Toby to find the very best solution I possibly could for him, and that's one area where I really do feel I've done well.
We have lived on our road for over 12 years, and directly across the road is a Residential Care Home for Learning Disabled adults. They are our neighbours. Over the years I've got to know a few of the more able residents, and I've seen how consistently happy and well-cared for they all are. Today they got a new resident - our Toby!
So he has moved across the road, still in the community he has grown up in, and still able to be an integral part of our family. He will be able to pop home several times a week, but in time, once the dust has settled, hopefully he and I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer. Other people will do all the stuff that exhausts me, the stuff that gets in the way of doing things like playing silly games, singing crazy songs, laughing like drains together at nothing in particular, and just having fun. Just like any other young person who is leaving home, his bedroom will still be here for him to stay over on the occasional night too, and certainly for birthdays and Christmases there's no way that our very own King of Celebrations could possibly be anywhere else but at home.
He has spent a lot of time over there during the past few weeks and he has quickly worked his magic on the staff who already seem to adore him. He is incredibly proud of his new bedroom. He can stand on the pavement outside our house and point correctly while saying "Mummy's House" and "Toby's House". However, I don't think it's dawned on him yet that this is permanent.
Please don't think for a moment that organising such a perfect solution has been easy in any way whatsoever. Normally people like Toby can get shipped off to somewhere miles away, even to the other end of the country. I've had to stand and fight Toby's corner against all the odds to make this happen, and it's taken months. Obstacles, hoops, political agendas, funding, policies, protocols, ideology - I've had to battle my way through more than you could ever imagine to make this happen. Only time will tell, if and when Toby is settled and happy, whether the standing my ground was worthwhile or not. I so very much hope that it was.
Next blog - I'll tell you about how we made it happen, and some of the rather shocking lessons I've learned along the way.
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Toby is my delightfully funny, mischievous, boisterous, best-hugger-in-the-world 19 year old son, who was born with disabilities so rare that he is a complete one-off, the only person in the world with his particular condition. In the early days, keeping him alive was a round-the-clock struggle, his prognosis was extremely poor and we spent most of his first 6 years in hospital with him seriously ill, and with me sleeping on a camp-bed next to his bed for weeks, and sometimes months on end. His medical care was full-on, he needed 24/7 treatment to keep him from dying, and in those early years we had 38 separate crisis close-calls when he wasn't expected to last more than a few hours. He certainly was never expected to make it all the way to adulthood, and I am so proud of him and so thrilled that he has survived against the odds, but in so doing, it does bring a different set of problems and heartbreaks too.
Toby has the intellectual equivalent capacity of a mainstream 2 year old, and we now know he is severely autistic too. He cannot swallow properly so until relatively recently he was entirely fed via a gastrostomy, and now that he can eat and drink, everything has to be pureed, there are more foods he has to avoid than he can eat, and we live with an extremely high risk of him choking or aspirating food-matter into his lungs. He is also doubly-incontinent, and he has challenging behaviour too, as well as still needing a lot of medical treatment and care. He can walk, which was a joy we never expected, but he is wobbly and unsteady so he also uses a wheelchair, and his speech is limited to one or two word sentences of a very limited vocabulary. None of this gives a real picture of the whirlwind of energy and tenacity and joyousness that is Toby, you really would have to meet him to understand just how very special he is.
So, he always has and always will need total 24-hour supervision, both from a medical and a behavioural point of view. He has absolutely no sense of danger, and this, coupled with a mischievous curiosity and an ability to wreck a room in 12 seconds, means that he can also be exhausting, and nothing else can get done if you're alone with him.
I've always known that, if Toby made it to adulthood, I would want him to be settled somewhere else by the time he was into his middle-twenties, simply because I've seen other adults with learning disabilities have to cope with losing their parents once they are well into their fifties, and then also cope with being springboarded into a completely alien environment with no one able to help them understand what's happening and to help them get used to their new home.
So Toby moving out when he's only a couple of months short of his 20th birthday isn't so far away from the plan I'd always had for him. It was always going to be difficult; Toby and I have been through so much together in his early life that we are closer than close, it's almost that we are a part of one another. What I think is really hard is that my cancer prognosis has taken away the choice of when we do this, and there is a real sense of urgency for a number of reasons.
Firstly, although I am doing really well on treatment and I may well live for several years, the fact is that my cancer is incurable, and I equally well may deteriorate and die relatively quickly. If that happened and Toby was living at home, it would be catastrophic for him, losing his mum, and having to get used to a new place to live in one fell swoop. Finding good places for people like Toby is like finding a needle in a haystack, and with the best will in the world from even the best social workers in the land, in an emergency situation like this, he could be catapulted into a really unsuitable environment without me around to jump up and down and insist on the best.
Secondly, cancer thrives on stress. Stress eats away at the capacity of your immune system to keep the cancer under control, and keeping cancer under control is vital if I am to live for as many years as I possibly can. I hate to say it, but Toby living at home is not good for my stress levels. We live on tenterhooks waiting for his next meltdown, or what havoc he will create. Then there is the constant stress of the next chest infection that may bring him down so low that we may lose him - always checking his breathing, always on edge listening for the tell-tale tone of a slight cough, always worried that he may fall or put something in his mouth that will choke him.... the list goes on and on. Then there is the stress that changing nappies and spoon-feeding a young man also brings, and ensuring he gets all his prescribed medicines on time and that they aren't causing him side-effects, it's all the stress of trying to second-guess how somebody else is feeling when they have no way of telling you themselves.
Thirdly, since I've had cancer, my energy levels and coping resources just aren't as great as they once were. The bottom line is that I'm just not strong enough to look after him anymore, and that really hurts. It feels like he is being jettisoned out of the hot-air balloon so that I can live a bit longer, as if I have had to make a choice between us, and that I've chosen me rather than him. That makes me feel very selfish and very guilty, and it hurts like hell.
The other thing that I'm acutely aware of is that, after all these years caring for Toby, my time will be significantly freed up, and I will be able to do things spontaneously with the rest of the family in a way that Toby's difficult care regime has previously made difficult. This is just piling on the guilt sky-high, that I may actually enjoy a different level of freedom while he has been pushed out. Its all adding up to be the biggest guilt-trip I've ever felt. I really need to find a way to reconcile these dichotomies, and move past these negative feelings as quickly as I can,
I owed it to Toby to find the very best solution I possibly could for him, and that's one area where I really do feel I've done well.
We have lived on our road for over 12 years, and directly across the road is a Residential Care Home for Learning Disabled adults. They are our neighbours. Over the years I've got to know a few of the more able residents, and I've seen how consistently happy and well-cared for they all are. Today they got a new resident - our Toby!
So he has moved across the road, still in the community he has grown up in, and still able to be an integral part of our family. He will be able to pop home several times a week, but in time, once the dust has settled, hopefully he and I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer. Other people will do all the stuff that exhausts me, the stuff that gets in the way of doing things like playing silly games, singing crazy songs, laughing like drains together at nothing in particular, and just having fun. Just like any other young person who is leaving home, his bedroom will still be here for him to stay over on the occasional night too, and certainly for birthdays and Christmases there's no way that our very own King of Celebrations could possibly be anywhere else but at home.
He has spent a lot of time over there during the past few weeks and he has quickly worked his magic on the staff who already seem to adore him. He is incredibly proud of his new bedroom. He can stand on the pavement outside our house and point correctly while saying "Mummy's House" and "Toby's House". However, I don't think it's dawned on him yet that this is permanent.
Please don't think for a moment that organising such a perfect solution has been easy in any way whatsoever. Normally people like Toby can get shipped off to somewhere miles away, even to the other end of the country. I've had to stand and fight Toby's corner against all the odds to make this happen, and it's taken months. Obstacles, hoops, political agendas, funding, policies, protocols, ideology - I've had to battle my way through more than you could ever imagine to make this happen. Only time will tell, if and when Toby is settled and happy, whether the standing my ground was worthwhile or not. I so very much hope that it was.
Next blog - I'll tell you about how we made it happen, and some of the rather shocking lessons I've learned along the way.
If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:
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