Friday, 29 November 2013
Coke Floats & Chemo: The Special Parent's Handbook
Coke Floats & Chemo: The Special Parent's Handbook: Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my fi...
The Special Parent's Handbook
Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my first book, because I really hope there's going to be time to write a load of them. Already I've pencilled together the bones of 12 different book titles, but then if no one likes my first one, who knows whether I'll be brave enough to impose the others onto an unsuspecting world.
There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us.
Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream.
Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability.
So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though.
Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far.
Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most.
Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening".
Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door. We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.
My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine. A little bit of financial security would be lovely, and that's what's really keeping me going.
I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption.
Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays.
Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am. Night night.
There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us.
Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream.
Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability.
So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though.
Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far.
Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most.
Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening".
Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door. We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.
My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine. A little bit of financial security would be lovely, and that's what's really keeping me going.
I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption.
Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays.
Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am. Night night.
Monday, 11 November 2013
Coke Floats & Chemo: She's that lady with cancer, you know
Coke Floats & Chemo: She's that lady with cancer, you know: Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my ...
She's that lady with cancer, you know
Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my analysis of some of the problems facing our NHS too. It's been a good week, if a little bit too full-on to catch my breath very often.
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
Thursday, 31 October 2013
Coke Floats & Chemo: Nursing the NHS back to health
Coke Floats & Chemo: Is the NHS wearing the Emperor's New Clothes?: Twitter and Facebook have worked overtime since my previous post, NHS Care for Disabled Children , and I've learnt so much more about ...
Nursing the NHS back to health
Twitter and Facebook have worked overtime since my previous post, NHS Care for Disabled Children, and I've learnt so much more about what's wrong with everything, not just the NHS, but Public Sector working generally. So many people have joined the discussions, from all corners of the issue, and all passionately concerned about the current problems facing the NHS. Old, young, nurses, doctors, patients, parents of young children, chidren of older parents, it has been fascinating. If only we could find a way to harness all the good ideas, and pull together to make it work as brilliantly as it deserves to.
It seems like the NHS is running on fear, from the very bottom to the very top, all the way to the Central Government, who are probably frightened too, maybe of spending too much money on it, and of being voted out by the rest of us if they mess it up to much. Fear makes people close ranks, become defensive and terrified of being blamed for any error, no matter how small. Subsequently, mistakes get swept under carpets, and anyone, staff or patient or relative, that lifts that carpet up and points it out, is going to become massively unpopular among those who are frightened of the repercussions.
So the best thing is to just pretend nothing wrong ever happens. Whitewash it away, don't listen, perpetuate the myth that everything is just fabulous. We've allowed the NHS to develop an "Emperor's New Clothes" syndrome. Every section of the NHS is so complaint-averse that unless we are all prepared to happily sing from the same songsheet that everything's rosy, we will be pushed out in the cold, ostracised, scapegoated and ignored. I know from bitter experience that this happens to patients and relatives, but until very recently, I had no idea it also applies to staff, even very senior staff.
How does an organisation even begin to improve if it isn't prepared to look at itself with a critical eye, and encourage its staff to do the same in a "how can be do even better" kind of way? Where is the Customer Service approach? Most commercial organisations would encourage whistleblowers to expose colleagues who are working against the best interests of the organisation.
Decent, hardworking, committed, caring healthcare professionals, the overwhelming majority of the NHS workforce, sometimes feel they are being effectively silenced and marginalised, and are struggling to be allowed to do their jobs to the best of their ability with integrity and professionalism. Thank goodness for them, it is because of them that most of the NHS delivers excellent, life-saving care in a way that makes us all proud and humbled.
My own experience of cancer treatment over the past 18 months has been a really good example of this. Amazingly caring, committed staff all pulling together to ensure I consistently get the very best of treatment, delivered in a holistically caring manner, with nothing too much trouble along the way. I really couldn't ask for anymore, and had this been my only experience of the NHS at work, I would be blissfully ignorant of any problems, and protectively defensive about anyone who had the audacity to fault it in any way whatsoever.
My own experience of cancer treatment over the past 18 months has been a really good example of this. Amazingly caring, committed staff all pulling together to ensure I consistently get the very best of treatment, delivered in a holistically caring manner, with nothing too much trouble along the way. I really couldn't ask for anymore, and had this been my only experience of the NHS at work, I would be blissfully ignorant of any problems, and protectively defensive about anyone who had the audacity to fault it in any way whatsoever.
However, when criticism is silenced, a situation can develop where the very worst of human characteristics can thrive and grow; bullying, intimidation, cruelty, dishonesty and worse. The world needs whistleblowers to keep standards high, particularly in the caring professions, but who on earth would be brave enough to raise their head over the parapet in this environment? There are luckily many very courageous people, but it seems that some have had to pay far too high a price for speaking the truth.
Until this bullying and intimidation is sorted out throughout the organisation at root and branch level, and a new climate of openness and acceptance of human error is encouraged, the NHS is likely to remain in its chronically ill state.
Until this bullying and intimidation is sorted out throughout the organisation at root and branch level, and a new climate of openness and acceptance of human error is encouraged, the NHS is likely to remain in its chronically ill state.
Partly, as well, I feel a finger needs to be pointed at the recent revolution in education. In my previous post, I suggested that perhaps the university training of our nurses is focussing on the academic rather than the caring element of their role. Many nurses have, quite rightly, pointed out to me that we need our nurses to be educated to the highest of levels if we are to consistently improve standards.
Thirty years ago, though, education was as much about weeding out unsuitable candidates as imparting the correct skills to the next generation of nurses. Nursing training was undertaken by individual hospitals, so there was a responsibility to ensure that all nurses who would carry their hospital training badge into other settings would maintain that hospital's good reputation. This meant that there was an accountability, a real incentive to instil qualities of care and integrity as well as competence alone.
Recently, not just in nursing, but universally among many training establishments, we have changed the emphasis to ensure as many people as possible pass their courses. Universities and colleges are financially penalised rather than rewarded for drop-out rates, and skills are often assessed in isolation, out of context of performing these skills in a spirit of care and compassion. This means that the trainees who would have been singled-out as unsuitable for their chosen profession in the past and asked to leave the course, are now able to sail on through unhindered towards a profession that really doesn't need them onboard.
When my children were very young, we were on the circuit for trainee nurses to spent two weeks at home with us as part of their training, shortly after the Project 2000 university style of training had been launched. Over a period of a couple of years, we had about 15 or so girls spend time with us; Toby was profoundly disabled with complex medical issues, and I also had two other under fives, so we were a very good environment for them to learn about nursing in the community, and I really valued the extra pair of hands. Most of the girls (not being sexist, we just weren't sent any young men!) were excellent, enormously helpful, hands on and just about wonderful. Only one let all the others down. One day, Toby was extremely ill and needed my total attention. Another child needed an urgent nappy-change. This young lady was sprawled on my sofa reading a book at the time. I asked her to change the nappy, she replied that she didn't need to thanks, because had I forgotten she'd changed one yesterday so I'd already signed it off in her Skills Assessment Checklist.
I talked to her tutor about the incident, who seemed completely unbothered, and suggested that we don't document it in her records because that might bring her overall marks down a bit, which might affect her degree award. Once upon a time, behaviour of this nature would have had a Ward Sister reading her the riot act.
It must be about 15 years since this particular young lady qualified, and I often wonder if she, together with her appalling attitude, is climbing the ranks towards the top of the NHS management structure.
What's also been interesting about the debate since I last wrote is that it's not just the NHS. I've heard stories about education authorities, social workers, housing departments and countless other statutory bodies that would make your hair stand on end. I've got plenty of these stories about both schooling and social care myself, but as I hear more and more with a similar theme I'm beginning to see that while the NHS can be an easy target because we all use it nationally, within local authorities ordinary people are being intimidated and bullied too by the very people paid by the public to serve the very public they are abusing.
The best bits of the past couple of weeks have undoubtedly been the Facebook chats with other mothers of disabled children. We have mostly developed a very gallows form of humour to cope with our challenges, and the more we exchanged the funnier it became, until we virtually had an entire script for a sitcom that included polishing shovels to bury dead professionals in the garden while our "service users" are "accessing the community" that wants to pretend they aren't really there, and I'm busy dropping dead with cancer in the next 10 minutes too. You probably had to be there to really appreciate it, but it had dozens of us howling with laughter and it just went on for days.
Tomorrow I'm off on a 3 day bootcamp, to learn how to write and publish a book, or several, and I really can't wait. Not sure if I'll have the stamina to keep going for three whole days including the commute up to London there and back each day, but sometimes you just have to find a way to do the things that you really want to do, and blow the consequences.
That's one thing I've learnt since this cancer of mine has spread to Stage IV. Time is so precious, I don't know how much more I've got, and if I'm going to write a few bestsellers, and a Miranda sitcom, and sort out the NHS, our education system and every single social worker in the country too, while still finding time for good friends and a lot of laughter, I'd better get my skates on and jfdi.
Wish me luck!
Thirty years ago, though, education was as much about weeding out unsuitable candidates as imparting the correct skills to the next generation of nurses. Nursing training was undertaken by individual hospitals, so there was a responsibility to ensure that all nurses who would carry their hospital training badge into other settings would maintain that hospital's good reputation. This meant that there was an accountability, a real incentive to instil qualities of care and integrity as well as competence alone.
Recently, not just in nursing, but universally among many training establishments, we have changed the emphasis to ensure as many people as possible pass their courses. Universities and colleges are financially penalised rather than rewarded for drop-out rates, and skills are often assessed in isolation, out of context of performing these skills in a spirit of care and compassion. This means that the trainees who would have been singled-out as unsuitable for their chosen profession in the past and asked to leave the course, are now able to sail on through unhindered towards a profession that really doesn't need them onboard.
When my children were very young, we were on the circuit for trainee nurses to spent two weeks at home with us as part of their training, shortly after the Project 2000 university style of training had been launched. Over a period of a couple of years, we had about 15 or so girls spend time with us; Toby was profoundly disabled with complex medical issues, and I also had two other under fives, so we were a very good environment for them to learn about nursing in the community, and I really valued the extra pair of hands. Most of the girls (not being sexist, we just weren't sent any young men!) were excellent, enormously helpful, hands on and just about wonderful. Only one let all the others down. One day, Toby was extremely ill and needed my total attention. Another child needed an urgent nappy-change. This young lady was sprawled on my sofa reading a book at the time. I asked her to change the nappy, she replied that she didn't need to thanks, because had I forgotten she'd changed one yesterday so I'd already signed it off in her Skills Assessment Checklist.
I talked to her tutor about the incident, who seemed completely unbothered, and suggested that we don't document it in her records because that might bring her overall marks down a bit, which might affect her degree award. Once upon a time, behaviour of this nature would have had a Ward Sister reading her the riot act.
It must be about 15 years since this particular young lady qualified, and I often wonder if she, together with her appalling attitude, is climbing the ranks towards the top of the NHS management structure.
What's also been interesting about the debate since I last wrote is that it's not just the NHS. I've heard stories about education authorities, social workers, housing departments and countless other statutory bodies that would make your hair stand on end. I've got plenty of these stories about both schooling and social care myself, but as I hear more and more with a similar theme I'm beginning to see that while the NHS can be an easy target because we all use it nationally, within local authorities ordinary people are being intimidated and bullied too by the very people paid by the public to serve the very public they are abusing.
The best bits of the past couple of weeks have undoubtedly been the Facebook chats with other mothers of disabled children. We have mostly developed a very gallows form of humour to cope with our challenges, and the more we exchanged the funnier it became, until we virtually had an entire script for a sitcom that included polishing shovels to bury dead professionals in the garden while our "service users" are "accessing the community" that wants to pretend they aren't really there, and I'm busy dropping dead with cancer in the next 10 minutes too. You probably had to be there to really appreciate it, but it had dozens of us howling with laughter and it just went on for days.
Tomorrow I'm off on a 3 day bootcamp, to learn how to write and publish a book, or several, and I really can't wait. Not sure if I'll have the stamina to keep going for three whole days including the commute up to London there and back each day, but sometimes you just have to find a way to do the things that you really want to do, and blow the consequences.
That's one thing I've learnt since this cancer of mine has spread to Stage IV. Time is so precious, I don't know how much more I've got, and if I'm going to write a few bestsellers, and a Miranda sitcom, and sort out the NHS, our education system and every single social worker in the country too, while still finding time for good friends and a lot of laughter, I'd better get my skates on and jfdi.
Wish me luck!
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 ...
Subscribe to:
Posts (Atom)