When Jim Blair, The Nurse Consultant responsible for the care of everyone with a Learning Disability at Great Ormond Street Hospital asked me What Would I Wish For, this is what I said. The one single element of hospital care that would have made all the difference. We once met a wonderful Paediatric Consultant who I will never forget.
Showing posts with label Learning Disability. Show all posts
Showing posts with label Learning Disability. Show all posts
Sunday, 30 August 2015
Hospital Care - What I would Wish For
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.
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.
Friday, 27 December 2013
Coke Floats & Chemo: Bittersweet Christmas
Coke Floats & Chemo: Bittersweet Christmas: Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on...
Bittersweet Christmas
Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on the table. That wretched dinner! More about that one later.
Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.
This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.
Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.
Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.
So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.
However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.
The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.
The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability. Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.
The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.
If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.
One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.
Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.
Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.
My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.
In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.
I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.
There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.
If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.
In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.
Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.
Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.
It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.
Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.
Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner.
Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.
This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.
Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.
Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.
So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.
However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.
The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.
The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability. Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.
The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.
If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.
One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.
Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.
Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.
My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.
In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.
I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.
There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.
If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.
In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.
Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.
Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.
It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.
Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.
Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner.
Wednesday, 16 October 2013
Coke Floats & Chemo: NHS care for disabled children
Coke Floats & Chemo: NHS care for disabled children: The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It ...
NHS care for disabled children
The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It feels churlishly unpatriotic to voice even the most gentle, whispered criticisms, and yet with it hurtling towards financial disaster, and brandished about as both a pawn and a weapon by politicians of all persuasions, constructive criticism right now is an absolute must.
For the majority of the country, the NHS is there in the background as an insurance policy for when they or a loved one really needs it. Chances are that when they do, it will be short and sweet, and they will be left with an incredibly good impression of an amazing NHS who perform miracles with a ready smile and some comforting words.
Yes, that version of the NHS does exist, it's alive and kicking and is a total joy to behold. I've seen it for myself time and again with my cancer care. However, for some of us, those of us who parent disabled children, there is often another very different version we also have to deal with, one that leaves us feeling isolated, alone, frightened, marginalised and very, very angry.
When you are a competent, intelligent parent of a disabled child, over the years you organically become their expert. We can tell by a fleeting expression that a seizure may be imminent, or by the tone of a cough that a chest infection is on its way. We know how to keep our children calm, how a whole sentence can be conveyed in a slight movement of the head of a non-verbal child, and what to do to best encourage them to co-operate with a frightening hospital procedure. We have years of 24/7 on-the-job training and experience, yet we lack the certificate on the wall that we have earned over and over again.
The very best NHS staff recognise this. They treat us with respect, they ask our opinions and they listen. These staff members are a joy to work with, and it is working "with", because they understand that working in partnership with committed parents will not only secure better outcomes for the children, but it will actually make their jobs a load easier too. Sadly, there aren't enough of these people to go around, which means that a lot of the time we have to deal with entirely preventable and particularly difficult situations.
Some staff feel threatened by our knowledge and experience. Some seem too insecure to share the decision-making process with us. Some are just downright arrogant and appallingly bad-mannered. This is endemic right across the spectrum from the lowliest receptionist to the most high-and-mighty Consultant Specialist. It isn't everybody, and it's desperately sad that these people are being let down too by their less-than-professional colleagues, but it's there, loud and clear, a sort of "institutionalised arrogance" that leaves us in absolutely no doubt as to who holds the power.
These people know we are vulnerable, they know that we are struggling to cope with what is often the impossible, and most of all, they know that it's highly unlikely that we would ever complain. How can we? Our children's health, well-being and sometimes their very existence is completely dependent on the NHS. So we parents struggle on, stoically and silently, smiling through gritted teeth and putting up with the indefensible attitudes of many members of staff. It feels like a very invidious, but far too prevalent, form of bullying, by people who are paid by the taxpayer to deliver care and support to those who really need it, not to make their lives more difficult.
What they don't know, though, is that we talk to each other. We share stories both of great practice and total incompetence, and most local parents get the measure of their local team pretty quickly. We are not alone, although in a clinic room it can often feel like it.
A close friend, after a particularly difficult afternoon at a local hospital seeing a very well-respected Paediatrician, wrote this to me on Facebook. I quote with her permission.
Yvonne, if you ever get a chance to tell medical professionals what parents really want from them, here's my bit.
1. Don't be late for your first appointment.
2. Introduce the other people in the room.
3. Listen/look at the child
4. Listen/look at the parent.
5. Have all the notes, in order.
6. Read the up to date notes before we walk in so we don't have to explain the last 13 years every time.
7. Develop some empathy and use it.
8. Use your common sense.
9. Stop ticking boxes, or at least make us feel like you're not ticking boxes.
10. Announciate your words.
11. Have some respect.
12. Realise that no matter how bad the person sitting in front of you says it is, it's 10 times worse in real life.
13. They probably don't get much sleep.
14. The person sitting in front of you doesn't get a day off, a holiday and will never retire from the job they do.
15. The person in front of you is not stupid or less important.
16. Don't ignore non verbal children.
17. Lose your ego.
18. Parents all talk to each other.
19. We don't like inconsistencies.
20. Acknowledge my letter or e-mail.
21. Get your head out of your backside or you'll miss something.
22. Don't use my child as a guinea pig.
23. Don't talk to us about the cost of a drug. Our child is priceless, so it's irrelevant
Soon other mothers chipped in too, with things like this: "If you call yourself an Autism Specialist, find out what autistic children actually can and can't do and don't then ask them to do the impossible." "Please don't ever again tell my six year old disabled child that he is naughty", "Don't tell me my Autistic child can't be autistic because he hasn't touched any of the walls yet", "Don't insinuate that I must be a bad parent". The debate went on for days. Dozens of mothers, all intelligent, sensible and grounded, sharing their stories of how the NHS short-changes our children time and again, and how we smother our anger with graciousness to get the best we possibly can on behalf of our children.
I am talking specifically from my own experience as a parent of a disabled child. I am sure it is also true of many other cohorts of patients, as evidenced from the number of recent NHS scandals about poor patient care. It feels like it's been a very long time since true patient care was at the core of the NHS values, although there are thousands of individuals working within the NHS who are doing their absolute best, in a working culture that doesn't always seem to actively support their best efforts.
Has the NHS become too big a vehicle to be able to deliver compassionate care in every situation? Has the University-led training of nurses promoted an academic framework at the expense of good old-fashioned basic care? Of course we want highly-trained, competent nurses, but kindness must remain at the core of everything they do.
Are there too many people expecting far too much from an overstretched service, causing an unconscious resentment among some staff members? Do we as a nation love the NHS so much that we have put them on such a towering pedestal and given them so much glory that they can, in some thankfully extremely rare cases, literally get away with murder?
We have to ask ourselves some difficult and painful questions. We have to share experiences and ideas. We have to expect the very very best from our National Health Service. They are public servants. We are the public. The dynamics need to shift towards a better quality of care for everybody, with a zero tolerance of poor care and unprofessional standards. Patients should be able to feel safe in complaining about poor service, without fear that there will be a closing of ranks and a universal hostility towards anyone who has dared to speak a less than popular truth.
The politicians pontificate about the state of the NHS and what can be done, yet many of them have private medical insurance and little if any experience of service delivery at the coal face. Nobody ever asks us what could be done to improve things. Give me a bunch of 10 mothers of disabled children, and we'd give our best shot to have it working efficiently and effectively within days, with a complete change of culture among staff too. Lets face it, with the crises we face on a daily basis with our children, and the breadline poverty levels on which most of us survive, sorting out the NHS might be a piece of cake with icing on the top!
The bottom line is that care costs exactly the same, whether it's good care or bad care. In fact good care is more cost effective because fewer mistakes are made and it's more likely that the right decisions will be made from the very beginning.
I always thought things couldn't get any worse when Toby was still under the Paediatric Team, being cared for by sometimes as many as 14 different Consultants, each only interested in a particular mechanical part of him. So much for holistic care. As he got older, it got better, and we were only seen by 8 regular Consultants. By then, I'd managed to cherry-pick the very best ones, and he had an excellent team. Toby's condition is so rare that he is the only known person in the world with it, which meant that we always saw the Consultants themselves, with each one wanting to see him at either 3, 6, or 12 month intervals. It was tough going sometimes, with an appointment at least once a week, but at least we knew nothing would ever be missed.
Well, as he turned 18 last year, one by one, they each discharged him to the care of his GP. This was scary enough because our GPs just don't really know him; Toby saw Hospital Consultants so often that we've barely had to visit our GP at all throughout his childhood. Whenever Toby has been poorly, he has crashed so fast that he's had to go straight to hospital.
Those frequent hospital visits are now handled by our GP Practice. That will work for acute health issues that present in a way that are obvious to others, but Toby needs more than that. He is non-verbal, he is severely intellectually impaired, and he has means by which to communicate on-going but invisible pain or any new symptoms he may have developed. More significantly, this reduction in the constant monitoring of his health will coincide with Toby leaving home and moving into a care facility. Even the very best carers won't have the experience or intuition to spot the nuances of any change in behaviour that I might notice, which could signal a health concern.
What do we get instead? An annual event called a "Learning Disabled Person's Healthcare Check", an annual event. So the kid-glove monitoring he's always had by seeing a Hospital Consultant every week or so has now been reduced to once a year. Last week I discovered that these annual checks aren't even handled by the GPs themselves. Not even by the Practice Nurse. No. A Healthcare Assistant, with no training and only a few months experience carried it out. The outcome? They have told Toby to eat healthily and take exercise. Great advice for a young person who is gastrostomy fed and whose mobility is so reduced that he is part-time wheelchair user.
Words for once have failed me completely.
So over to you, what do you think? What are your experiences of the NHS, good and bad? How can we work together to make the NHS something we should all be incredibly proud of once again?
I love the NHS, I know that without it, neither Toby nor I would be alive today. I love it enough to want it to be the very best it can possibly be.
A few months after I wrote this, I wrote a book called The Special Parent's Handbook, to try and make things easier for the next generation of families with disabled children. In it I've shared everything I've learnt in how to make things easier, particularly when working with the team of staff who support our children in education, health and social care.
It is now also being widely read by those who work with our children, and I've had considerable positive feedback from these professional members of staff about the book, and how it's helped them to better understand the issues facing families like my own.
The Special Parent's Handbook is available on order from any bookshop or from Amazon, and there's a Kindle version too. Here's the Amazon link if you'd like to buy it.
I also have two Facebook Pages, both posting the very best information, support and news, one for those interested in issues concerning disability,
and one for those with an interest in cancer,
It would be great to see you there!
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