Showing posts with label Twitter. Show all posts
Showing posts with label Twitter. Show all posts
Thursday, 27 August 2015
Coke Floats & Chemo: Serendipity and Social Media as an NHS Change-Make...
Coke Floats & Chemo: Serendipity and Social Media as an NHS Change-Make...: Serendipity Don't you just love a bit of serendipity? A string of random events which position themselves around each other to have a...
Wednesday, 26 August 2015
Serendipity and Social Media as an NHS Change-Maker
Serendipity
Don't you just love a bit of serendipity? A string of random events which position themselves around each other to have a huge collective impact. For me it's been a hospital appointment, a book I've read, some workshops, a totally unexpected invitation and some great Twitter conversations. Together they've pushed me out of my comfort zone and made me think about everything a little bit differently - and I'm loving it.
A World Gone SocialThe book was startling in the effect it's had on me. It's a long time since I've picked up a non-fiction book that was so good I could barely put it down, and every time I turned a page there were yet more light-bulb moments and flashes of inspiration waiting for me. Please read it if you get a chance, and I'd love to know what you think. It's called "A World Gone Social" by Ted Coine and Mark Babbitt, and their take on the way the world is changing has given me a new perspective on so many aspects of life.
It's about how huge an impact social media is having on society, even though social media is new. No one knows quite where it's taking us as a society, but it's definitely here to stay. It's breaking down barriers and changing the way we communicate. It's giving ordinary people unprecedented direct access to the movers and shakers right at the top of every organisation in the world. It's giving a sense of power and control back to individuals as never before - it's loosening the structured formality of society, which is taking democracy to a whole new level.
Some of us love it. We can find like-minded people, people we'd never have med 10 years ago, people we can share ideas and visions with. Partnerships are being formed with people who otherwise would never have met. Career opportunities are being created and all sorts of projects are being initiated which would never before have got off the ground. We can build support networks with invaluable peer support, something that has been a godsend for me. I'm part of two online communities now, one comprised of other parents of special needs children and the other of other women who also have breast cancer.
No more Hype and Spin
However, social media is bigger than that - it's reflecting a
whole shift in the way people think, and what we want from life. We have
evolved as a society. We are all heartily sick of hype and spin. We've had
decades of the wool being pulled over our eyes with glossy marketing campaigns
and clever advertising. We can see through it all, and we want transparency,
accountability and honesty.
Twitter and Facebook have an authenticity which has been the missing piece of a jigsaw for many of us. There is an honesty and authenticity about how people come across on social media - there's a shared vulnerability that facilitates seeing each other's true character in a way that sometimes takes much longer in real life. There's a simplicity about it, a shared purpose, and a real community where trust easily turns into friendship.
Don't you just love a bit of serendipity? A string of random events which position themselves around each other to have a huge collective impact. For me it's been a hospital appointment, a book I've read, some workshops, a totally unexpected invitation and some great Twitter conversations. Together they've pushed me out of my comfort zone and made me think about everything a little bit differently - and I'm loving it.
A World Gone SocialThe book was startling in the effect it's had on me. It's a long time since I've picked up a non-fiction book that was so good I could barely put it down, and every time I turned a page there were yet more light-bulb moments and flashes of inspiration waiting for me. Please read it if you get a chance, and I'd love to know what you think. It's called "A World Gone Social" by Ted Coine and Mark Babbitt, and their take on the way the world is changing has given me a new perspective on so many aspects of life.
It's about how huge an impact social media is having on society, even though social media is new. No one knows quite where it's taking us as a society, but it's definitely here to stay. It's breaking down barriers and changing the way we communicate. It's giving ordinary people unprecedented direct access to the movers and shakers right at the top of every organisation in the world. It's giving a sense of power and control back to individuals as never before - it's loosening the structured formality of society, which is taking democracy to a whole new level.
Some of us love it. We can find like-minded people, people we'd never have med 10 years ago, people we can share ideas and visions with. Partnerships are being formed with people who otherwise would never have met. Career opportunities are being created and all sorts of projects are being initiated which would never before have got off the ground. We can build support networks with invaluable peer support, something that has been a godsend for me. I'm part of two online communities now, one comprised of other parents of special needs children and the other of other women who also have breast cancer.
No more Hype and Spin
However, social media is bigger than that - it's reflecting a whole shift in the way people think, and what we want from life. We have evolved as a society. We are all heartily sick of hype and spin. We've had decades of the wool being pulled over our eyes with glossy marketing campaigns and clever advertising. We can see through it all, and we want transparency, accountability and honesty.
Twitter and Facebook have an authenticity which has been the missing piece of a jigsaw for many of us. There is an honesty and authenticity about how people come across on social media - there's a shared vulnerability that facilitates seeing each other's true character in a way that sometimes takes much longer in real life. There's a simplicity about it, a shared purpose, and a real community where trust easily turns into friendship.
Yes there are trolls lurking who want to cause upset and trouble,
and there have been some pretty high profile incidents of this reported in the
press. However, there are some pretty unpleasant people everywhere, in every walk of life, and
there always have been. Bullying is everywhere, but on social media something
very interesting is often happening when someone is attacked online. People
aren’t tolerating it, they are standing up and being counted, and supporting
the those who are being targeted. They are looking out for each other – a new
solidarity of fairness, kindness and thoughtfulness is emerging – and people
are fighting back in the face of bullying in a way that the same people are
reticent to do in schools, workplaces and on the streets of the real world.
Yes there are trolls lurking who want to cause upset and trouble, and there have been some pretty high profile incidents of this reported in the press. However, there are some pretty unpleasant people everywhere, in every walk of life, and there always have been. Bullying is everywhere, but on social media something very interesting is often happening when someone is attacked online. People aren’t tolerating it, they are standing up and being counted, and supporting the those who are being targeted. They are looking out for each other – a new solidarity of fairness, kindness and thoughtfulness is emerging – and people are fighting back in the face of bullying in a way that the same people are reticent to do in schools, workplaces and on the streets of the real world.
As people, we have spent so long trying to impress each other and
big ourselves up. Yes, there is still a fair amount of that on social media,
but there is also a new spirit of openness and vulnerability which is very
exciting. People are beginning to feel more collaborative and less competitive.
It’s subtle, but it’s happening, and it’s growing.
Changing the shape of Hierarchical Organisations
It’s changing the way companies are working, again it’s only just
beginning, but in the book there are so many examples of real life shifts in
business practice that it feels that there is a very exciting new way of doing
things everywhere that is on its way. These companies which are leading the way
in working differently are becoming flatter in their structure, removing layers
of management roles, and giving staff more autonomy and personal
responsibility. There is trust, and most of all, there is kindness coming back
into the workplace. Rules and regulations are being relaxed – when people are
too micromanaged they become fearful, stressed, and less productive. It’s a
movement, a shift, which is tangible yet still in its infancy – but the signs
are there that this could be big.
In the same way that hype and spin are now out-dated, people are
also sick and tired of policies and procedures and tick-boxes taking precedence
over people and what we, as individuals, need for a sense of well-being.
I read the book in virtually one sitting – barely able to put it
down because it so totally captured my imagination. Then when I finished it the
thinking began. If the future is being led by social media and a more
collaborative approach, then the past is defined by huge corporations with
rigid controls on working practices, where staff are ruled by fear and stress.
The sort of place where bullying can go unchecked because everyone’s too
frightened to whistle-blow. Somewhere like the NHS in fact.
I love the NHS
The NHS workforce is unique. It has huge talent - an army of fiercely intelligent, highly motivated, intensively trained and precision skilled individuals. The vast majority purposefully chose a career in healthcare because they care about people, they are intrinsically kind-hearted.
Many staff, despite years of the frustrations of working with
policies, procedures, pathways, processes, rules and regulation, are still
simply fabulous. Just as in social media, there are some pretty unpleasant
members of the public these people have to deal with on a daily basis, and yet
they still have endless reserves of tolerance, kindness and patience. They know
how frightened we, the patients often are, and they have the capacity to listen
properly as we voice our fears. They offer comfort and inspire our trust in
them.
When Kindness & Thought is Forgotten
I encountered two very difficult moments during my recent hospital
procedure, and being a very experienced patient, neither incident shocked or
surprised me. What warmed my heart was that, of the 7 members of staff
responsible for my well-being that day, 5 of them were wonderful.
The other two? I was apprehensive, particularly since, for
clinical reasons, I was unable to be sedated, something that is generally
standard practice for this procedure. When I arrived in the room, I heard every
word of a disparaging discussion already underway about me, and one member of
staff was very clearly expressing his irritation that I was going to be
conscious throughout. Turning to me,
this person then said “Oh we’ve decided to be brave today have we? I hope you
know it’s going to hurt”. Not exactly the sensitive, caring approach I’d hoped
for.
Later in recovery, finally a nurse approached me where I was still
lying on a trolley, and closing the
curtains told me I could get up and go home. She then walked away. I have
limited mobility. Sitting up on the trolley without help, particularly since I
was still in pain and disorientated, was a fairly major ordeal, and then when I
swung my legs over the side of the trolley I realised that my feet were nearly
six inches off the ground. I’m not quite five foot tall, and I really didn’t
know how I was going to get off that trolley without falling. Very gingerly I
had to edge forward, and slowly lower myself, lunging at the wall close by to
break my fall as I finally jumped the last couple of inches. It must have been
in my notes that I have bone cancer. A simple gesture of a hand being extended
to hold onto, or a step moved into place that I could have stepped onto, would
have been the work of seconds but would have made an enormous difference to my
struggle.
I obviously took far too long in getting off the trolley. This
person returned a few minutes later and flamboyantly opened the curtains before
checking whether I was still there or not. I was. And half naked.
Why is Kindness Forgotten?
Yet it is kindness that patients remember. That, along with staff
taking the time to listen and to exercise a little thoughtfulness. Has anyone ever stood outside a hospital with
a clipboard asking people, as they leave, a simple question - "Was anyone
unkind to you today?" Not to my knowledge, but they'd learn a lot if they
did.
The NHS is a huge, clunky, unwieldy machine of
an organisation. It has policies, procedures, pathways and processes coming out
of its ears. Central Government is always adding new expectations. Staff are
subject to so many rules and regulations and new guidelines and initiatives
that they are effectively doing their job with their hands tied. The priority
has shifted away from people - both staff and patients - to such a degree that
it's now much more about working for the legal department, covering the
organisation's back in case of future litigation. The amount of paperwork every
member of staff is expected to do has long ago passed the tipping point of
ridiculousness. It's a case of one minute at a bedside now means that nearly 10
minutes is spent writing down every nuance of that bedside conversation. The
complexity of the bureaucracy is suffocating real care. Staff are frightened of
putting a foot wrong. Sadly, less and
less of the things they are doing is about good old-fashioned patient care.
It's more and more about filling out forms, jumping through invisible hoops,
and being too frightened to do their job with any real heart and soul.
As the largest health provider in the world, the NHS has created a pretty unhealthy working environment. Fear breeds distrust, people shut down, staff feel unsafe and vulnerable to being accused of wrong-doing. Worst of all, when people feel unsafe, the perfect conditions are created for bullying to come into its own, and it does, I've seen it.
I know quite a lot about the NHS and I've had far more than my fair share of value from the organisation. For the past 3 years I've had constant on-going intensive treatment for Stage 4 breast cancer. Toby, my middle child,
spent most of his first six years in hospital, with me living alongside him
24/7 throughout every admission. The severity of his disabilities and complex
needs meant that we had countless outpatient appointments, therapy
appointments, community health care teams, carers, nurses working for long
shifts in our home - you name it, I've seen it. I've seen great things happen
but I've also seen everything else too.
So have thousands of other patients and their families. We have so much knowledge, insight, experience and answers between us that could really help heal the NHS and get it back into working order again. Yet nobody asks us what we really think, and it's very difficult to get our thoughts across. The NHS need supportive people working alongside them, critical friends who can highlight simple, cost effective changes.
Kindness costs nothing, and yet it is priceless. That’s the irony
of the situation – good care and bad care don’t cost the same, good care is far
less costly because fewer errors are made and everything works more
efficiently. It isn’t just a patient issue either, it’s a colleague issue too.
A new culture of kindness has to begin with staff working together, being kind
to each other, looking out for one another and extending thoughtfulness in the
workplace. Just like what happens on Twitter.
Co-production
Loosening the Steel Grip of Micromanagement
This steel grip of micromanagement has to be loosened. Not
overnight, but in manageable stages. Of course there must be checks and
balances, of course there must be excellent record keeping, but there has to be
room to innovate and some freedom of thought too. Low morale is endemic right
across the workforce, and staff are stressed and unhappy. Unhappy people
don't work productively. No wonder some of them don’t practice kindness. What
is amazing is that most of them do.
Twitter Leading NHS Change
Society is changing, and I'm hopeful that it's a good change that is on its way. The NHS needs to embrace these changes and implement them throughout, from the top down and from the bottom up. Hierarchical organisations such as the NHS are going to become out-dated dinosaurs in the next decade or so unless they find significantly different ways of doing things. Change has to come from within, but may have to be kick-started from outside, and with difficult truths being spoken by ordinary people like you and me.
NHS England Leadership
I believe that the NHS has already seen the writing on the wall and is fully committed to changing. I have met several of the NHS England Leaders, and they are a breath of fresh air in their energy, vision and
optimism. They can see how it is and how it needs to change, but it's a huge
task ahead and one that they know needs a complete sea-change in culture.
My New Series of Workshops
Underpinning every workshop is a spirit of kindness, where I will create a safe, supportive space in which participants can be open with each other, listen to each other's experiences and stories, and share their best bits. There are thousands of people who feel like I do, both inside and outside the NHS, wanting positive change, and believing it can happen As I said earlier, I love the NHS, and even if I can only be a tiny drop in the ocean, I want to do everything I can to make it better, to heal it back to health.
Embracing Change
The NHS workforce is unique. It has huge talent - an army of fiercely intelligent, highly motivated, intensively trained and precision skilled individuals. The vast majority purposefully chose a career in healthcare because they care about people, they are intrinsically kind-hearted.
As the largest health provider in the world, the NHS has created a pretty unhealthy working environment. Fear breeds distrust, people shut down, staff feel unsafe and vulnerable to being accused of wrong-doing. Worst of all, when people feel unsafe, the perfect conditions are created for bullying to come into its own, and it does, I've seen it.
I know quite a lot about the NHS and I've had far more than my fair share of value from the organisation. For the past 3 years I've had constant on-going intensive treatment for Stage 4 breast cancer. Toby, my middle child, spent most of his first six years in hospital, with me living alongside him 24/7 throughout every admission. The severity of his disabilities and complex needs meant that we had countless outpatient appointments, therapy appointments, community health care teams, carers, nurses working for long shifts in our home - you name it, I've seen it. I've seen great things happen but I've also seen everything else too.
Loosening the Steel Grip of Micromanagement
Society is changing, and I'm hopeful that it's a good change that is on its way. The NHS needs to embrace these changes and implement them throughout, from the top down and from the bottom up. Hierarchical organisations such as the NHS are going to become out-dated dinosaurs in the next decade or so unless they find significantly different ways of doing things. Change has to come from within, but may have to be kick-started from outside, and with difficult truths being spoken by ordinary people like you and me.
NHS England Leadership
I believe that the NHS has already seen the writing on the wall and is fully committed to changing. I have met several of the NHS England Leaders, and they are a breath of fresh air in their energy, vision and optimism. They can see how it is and how it needs to change, but it's a huge task ahead and one that they know needs a complete sea-change in culture.
Underpinning every workshop is a spirit of kindness, where I will create a safe, supportive space in which participants can be open with each other, listen to each other's experiences and stories, and share their best bits. There are thousands of people who feel like I do, both inside and outside the NHS, wanting positive change, and believing it can happen As I said earlier, I love the NHS, and even if I can only be a tiny drop in the ocean, I want to do everything I can to make it better, to heal it back to health.
Embracing Change
Not everyone is ready to embrace social media, and many large
organisations find it threatening. Yes it is likely to change the status quo,
but in a way that should be beneficial to all of us.
If the NHS is to successfully make the changes that this social
revolution is heralding, it needs its staff to be on board, and for them to
feel comfortable in leading the way. Already there are thousands of NHS
employees on Twitter, and from every sector and seniority level across the
board. They are learning to bring down barriers and to embrace diversity of
opinion and a new spirit of collaboration. As their numbers grow, they will
bring this new-found spirit of openness back into their work stations with
them, and in time it will take hold throughout the whole NHS.
These people are the pioneers, the forward-looking change-makers,
the ones the NHS so badly needs on board.
#We Nurses
Nurses were talking freely, exchanging ideas, supporting each other, pooling their thoughts, pulling together - just how every corner of the NHS could work without the limitations of over-reaching rules, regulations, intimidation and fear. Yet the fear was still there - lurking in the shadows. Nurses felt that many of their colleagues are too frightened to tweet for fear of being accused of saying the wrong thing. There was a lot of discussion of what guidelines should be put in place for nurses to follow, and whether that would give more nurses the confidence to join in the on-line discussions.
The NHS is rule-bound. Twitter is the complete opposite. The NHS needs its staff to lead the way towards a social model of doing things, and staff should be encouraged to take part in online debate without having to abide by petty rules. Nurses are sensible people. They know what they can and can't say in public. One or two may overstep the mark perhaps, but one or two probably do already and say too much when out with friends. You can't restrict the freedom of everyone just because a tiny minority might occasionally step out of line. There has to be trust. There has to be personal responsibility. Rules will curtail freedom, spontaneity and authenticity. Anything they’re “allowed” to say will become meaningless.
Also, who would set these rules for Twitter? At the moment the world is made up of two types of people, those who are embracing social media already, and those who are cautious, skeptical and would like to make it all go away. That's true right across the spectrum, this isn't a specific NHS issue.
However, it’s the skeptics who want rules in place, and they’ll be
the ones to write them. They don’t want the early adopters running wild in this
new-fangled twitter-thing and somehow causing trouble. But how can they write
rules for something they don’t understand? The Twitter nurses and doctors and
their colleagues have to be set free and allowed to explore new ways of doing
things unburdened by bureaucracy. Those who are uncertain of change must be
encouraged to trust their pioneering colleagues to act responsibly, and they
won’t be let down.
The NHS was designed and developed for people. Somehow it’s lost
its way. Everyone, patients and staff alike, have to be placed right back in
the heart of the organisation ahead of all the bureaucracy.
NHS England - Innovation Expo 2015 Conference
Lastly - my exciting invitation? Completely unexpectedly, with thanks to the lovely Gill Phillips of Whose Shoes, I'm off to Manchester next week to be at the NHS Expo Innovation Conference. Who knows? Maybe somebody will ask me what I think about the NHS. Serendipity indeed.
PS! I've just done a short selfie-video vlog on What I would wish for from Hospital Care if you'd like to hear more.
Are you on Facebook? If so, have you seen the
Coke Floats & Chemo Facebook Page, offering support, information, news and hope to anyone coping with cancer, sharing the best relevant posts nearly every day?
I also have another Facebook Page called The Special Parent’s Handbook. It’s full of information, advice and support for families of special needs children
Nurses were talking freely, exchanging ideas, supporting each other, pooling their thoughts, pulling together - just how every corner of the NHS could work without the limitations of over-reaching rules, regulations, intimidation and fear. Yet the fear was still there - lurking in the shadows. Nurses felt that many of their colleagues are too frightened to tweet for fear of being accused of saying the wrong thing. There was a lot of discussion of what guidelines should be put in place for nurses to follow, and whether that would give more nurses the confidence to join in the on-line discussions.
The NHS is rule-bound. Twitter is the complete opposite. The NHS needs its staff to lead the way towards a social model of doing things, and staff should be encouraged to take part in online debate without having to abide by petty rules. Nurses are sensible people. They know what they can and can't say in public. One or two may overstep the mark perhaps, but one or two probably do already and say too much when out with friends. You can't restrict the freedom of everyone just because a tiny minority might occasionally step out of line. There has to be trust. There has to be personal responsibility. Rules will curtail freedom, spontaneity and authenticity. Anything they’re “allowed” to say will become meaningless.
Also, who would set these rules for Twitter? At the moment the world is made up of two types of people, those who are embracing social media already, and those who are cautious, skeptical and would like to make it all go away. That's true right across the spectrum, this isn't a specific NHS issue.
NHS England - Innovation Expo 2015 Conference
Lastly - my exciting invitation? Completely unexpectedly, with thanks to the lovely Gill Phillips of Whose Shoes, I'm off to Manchester next week to be at the NHS Expo Innovation Conference. Who knows? Maybe somebody will ask me what I think about the NHS. Serendipity indeed.
PS! I've just done a short selfie-video vlog on What I would wish for from Hospital Care if you'd like to hear more.
Are you on Facebook? If so, have you seen the
Coke Floats & Chemo Facebook Page, offering support, information, news and hope to anyone coping with cancer, sharing the best relevant posts nearly every day?
I also have another Facebook Page called The Special Parent’s Handbook. It’s full of information, advice and support for families of special needs children
Yvonne Newbold named by HSJ as a Top 50 Inspirational Women in Healthcare 2014
Author of "The Special Parent's Handbook"
Saturday, 29 March 2014
Coke Floats & Chemo: Rattling Cages
Coke Floats & Chemo: Rattling Cages: Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in...
Rattling Cages
Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in motion a chain of events that means that, in a few months time, nothing will ever be quite the same for my family again.
The book I've been writing for the past four months is finished, I've chosen the photos for the cover design, and at some point during the summer, I will be a published author. Exciting beyond belief, but also daunting and a little scary too, because this could be a very controversial book, and there will be many within the elite senior management and political ranks who will wish the book had never been written, and may do all within their power to discredit and silence me.
Luckily, mine is not a lone voice. There are many of us coming together, seeking a better way forward, a more accountable approach, and a kinder, more humane way of doing things than the current systems in place within the NHS, Education and Social Services. Initially we were all lone voices, swimming against the tide, with nobody listening. Twitter has helped many of us find each other. Each one of us with important stories to tell, or with innovative new ways of doing things already being implemented, or with our individual visions of how the future should look like for supporting the most vulnerable people in our society with compassion, dignity, respect and care.
If you are on Twitter, you might like to follow some of these inspirational voices, all doing their own bit to make the future a better one for everybody:
@patientmemoirs @DrUmeshPrabhu @NHSwhistleblowr @meandme10 @KayFSheldon @HelenHSAUK
@wwwframeworks4c @WhoseShoes @JusticeforLB @curetheNHS @willcpowell @stopcoverups @archangelolill@suzancollins @GrangerKate @AlysColeKing
There are many more, all with their part to play in rebuilding things better, if only we are allowed to be heard.
The book I've written, called "The Special Parent's Handbook", is written primarily for parents who are at the sharpest end of the best and the worst that statutory services can offer. They are parents whose children are disabled or seriously ill. I've tried to write the book I wish I'd been given on the day I was first told I had a child with serious disabilities. When I was first thrust, completely unprepared, for a lifestyle so different from anything I had ever envisioned.
At first I was overwhelmed with a what seemed like a blanket of despondency and fear. There was no set of instructions, no one I knew who had ever had to cope with anything like I was facing, and I had no clue of what to do or where to go for help. Meanwhile, it felt like every clinician, therapist, specialist and social worker was queuing up to strip away yet another layer of privacy and self-confidence. Everything I knew to be rock-solid about the world was collapsing around me, and I didn't have a clue how to be a parent to a child with complex needs and profound disabilities who would spend most of his next six years in hospital fighting for his life. He was never expected to survive more than a few short weeks; in three week's time we will celebrate his 20th birthday.
On the way through his childhood, stumbling a lot, falling often, but sometimes getting it right, it was discovered that his older sister and his younger brother both had a whole list of disabilities of their own, completely different to his. Their conditions are almost invisible, yet have a significant impact on virtually every aspect of their daily lives.
Over time, I learnt a lot, and as a family we started to get it right much more often than we got it wrong, and it's now time to pass some of that learning onto other parents. There's nothing quite like being diagnosed with incurable cancer, like I was a year ago, to make you realise there's no time to waste in getting things like this done and dusted.
I've tried to write a comprehensive parenting guide covering all the stages of childhood and virtually every eventuality along the way. In the end, the hardest bit was deciding what not to included, because if I'd put in everything it would have been longer than War and Peace.
There are chapters on getting the news and absorbing it without losing the plot, how to keep your own relationship from becoming a casualty of the untold stress, how to handle long hospital admissions, endless out-patient appointments and all sorts of other meetings too. Some chapters deal with finding ways to give all your children a happy childhood, packed with ideas of things you can do even when you can't go out and about or on holiday or take your eye off the child that may stop breathing at a moment's notice. Other chapters deal with our Education System and how to get the very best deal for your child, and Social Services, about how they can help but how, like every other service, the help they can offer says much more about funding, budgets and politics than it does about the help your child actually gets. A lot of the book looks at how you slowly become the only true expert about your child, and the frustrations that can cause when no one will listen to you, but also strategies to give your feelings the best chance of being heard. There is also a chapter on food issues as well as one about coping with meltdowns.
All through the book I've put a Tips, Tricks & Strategies section at the end of every chapter. A lot of it you'd never see anywhere else, because they include some of the oddball quirky solutions we've had to make up as we went along, sometimes as a matter of urgency. It's very much a hand's-on, practical guide from one parent to another, and there are a few laugh out loud moments too scattered along the way. It's honest, and I try to tell it as it is, highlighting the appalling errors I've sometimes made as we muddled through. That's often when the best lessons get learnt. An academic, preachy tome this is not.
Inevitably, the readers will learn a lot about our family too, since I've used various real-life moments from our house to illustrate things in the book. They won't be able to fail to notice how incredibly proud I am of all three of my children, now on the brink of adulthood, and all that they have overcome and how much they have achieved, against very considerable odds.
There's also a fair amount of criticism about the services that too often fail families like ours, and how these clunky organisations often don't support the individuals who work for them in being able to reach out and offer the help we need. So often small changes would make all the difference, low-cost or no-cost solutions, sometimes these solutions could even result in the saving of thousands of Public Sector money. All it would take is a tiny shift in attitude sometimes, or a slightly different approach, and everything would join up and work so much better.
A handful of people have already read the book, including some professionals and some "Special Parents" too. All of them have said that this book should be a "must-read" for everyone who works with anyone with disabilities. If they read it, I'm pretty sure some of them won't like it, but I hope I've been fair, pointing out the inspirational, devoted care we've received as a family as well as some examples of the less good. Some of the professionals who have already been kind enough to read it for accuracy have told me that they have changed their approach already as a result of what they learnt from the book, which was lovely of them to say and made me feel really encouraged.
Another person who has been really encouraging all the way through is Rosa Monckton, who is also an expert in this field since she is a mother of a daughter with Down's Syndrome. Rosa is also a tireless campaigner for improvement in the services currently on offer to children with disabilities, and has presented some very hard-hitting TV documentaries on the subject.
Rosa has very kindly written the Foreword to the book. Her words are very powerful indeed, and I am so grateful for her enthusiasm and endorsement of this project. In her Foreword she also says that it should be read by all professionals working with disabled people, and she goes so far as to call my book "A Story of our Time".
So, it's all out of my hands now. We'll just have to wait and see what happens when it gets published. There are bound to be detractors, but I'm crossing my fingers that they will be outnumbered by the people who read the book and can feel the spirit in which it has been written.
Just because I've sent the book off doesn't mean I can sit and chill on the sofa until it gets published then swan about signing books and smiling when it comes out with a glass of champers in my hand. That would be nice.
Instead, I've now got to focus this technophobic brain of mine into mastering how to design a website, a Facebook page, and sort out all the PR for the book too. There's no point in writing a book if no one knows about it to buy it. I've being interviewed by a journalist who writes for The Guardian on Monday. We'll be talking about another aspect of disability for a different publication, but she has already asked for an early review copy of the book, and may be able to do a high-profile feature about it nearer the publication date. All good stuff.
There is also something far more important than any book that I'll be focussing a lot on over the next few weeks, in fact forever. We are only a few days away from welcoming my first Grandchild into the world. A little boy. His parents are very young teenagers, but they have both more than risen to this huge challenge, and despite their tender years, they have the makings of becoming fabulous parents. My little boy, now 16 and a whole foot taller than me, will be a Dad. Both the young parents come from strong, stable, supportive and loving families, and we will all pull together to give this little lad the very best start in life he could wish for. It also means that, despite my less than great prognosis, I will live to be a Granny.
Exciting times, new life and a new generation. Wouldn't it be just fantastic if this next generation of children grow up with the services properly in place to support both them and their families, and that those services do exactly that?
The book I've been writing for the past four months is finished, I've chosen the photos for the cover design, and at some point during the summer, I will be a published author. Exciting beyond belief, but also daunting and a little scary too, because this could be a very controversial book, and there will be many within the elite senior management and political ranks who will wish the book had never been written, and may do all within their power to discredit and silence me.
Luckily, mine is not a lone voice. There are many of us coming together, seeking a better way forward, a more accountable approach, and a kinder, more humane way of doing things than the current systems in place within the NHS, Education and Social Services. Initially we were all lone voices, swimming against the tide, with nobody listening. Twitter has helped many of us find each other. Each one of us with important stories to tell, or with innovative new ways of doing things already being implemented, or with our individual visions of how the future should look like for supporting the most vulnerable people in our society with compassion, dignity, respect and care.
If you are on Twitter, you might like to follow some of these inspirational voices, all doing their own bit to make the future a better one for everybody:
@patientmemoirs @DrUmeshPrabhu @NHSwhistleblowr @meandme10 @KayFSheldon @HelenHSAUK
@wwwframeworks4c @WhoseShoes @JusticeforLB @curetheNHS @willcpowell @stopcoverups @archangelolill@suzancollins @GrangerKate @AlysColeKing
There are many more, all with their part to play in rebuilding things better, if only we are allowed to be heard.
The book I've written, called "The Special Parent's Handbook", is written primarily for parents who are at the sharpest end of the best and the worst that statutory services can offer. They are parents whose children are disabled or seriously ill. I've tried to write the book I wish I'd been given on the day I was first told I had a child with serious disabilities. When I was first thrust, completely unprepared, for a lifestyle so different from anything I had ever envisioned.
At first I was overwhelmed with a what seemed like a blanket of despondency and fear. There was no set of instructions, no one I knew who had ever had to cope with anything like I was facing, and I had no clue of what to do or where to go for help. Meanwhile, it felt like every clinician, therapist, specialist and social worker was queuing up to strip away yet another layer of privacy and self-confidence. Everything I knew to be rock-solid about the world was collapsing around me, and I didn't have a clue how to be a parent to a child with complex needs and profound disabilities who would spend most of his next six years in hospital fighting for his life. He was never expected to survive more than a few short weeks; in three week's time we will celebrate his 20th birthday.
On the way through his childhood, stumbling a lot, falling often, but sometimes getting it right, it was discovered that his older sister and his younger brother both had a whole list of disabilities of their own, completely different to his. Their conditions are almost invisible, yet have a significant impact on virtually every aspect of their daily lives.
Over time, I learnt a lot, and as a family we started to get it right much more often than we got it wrong, and it's now time to pass some of that learning onto other parents. There's nothing quite like being diagnosed with incurable cancer, like I was a year ago, to make you realise there's no time to waste in getting things like this done and dusted.
I've tried to write a comprehensive parenting guide covering all the stages of childhood and virtually every eventuality along the way. In the end, the hardest bit was deciding what not to included, because if I'd put in everything it would have been longer than War and Peace.
There are chapters on getting the news and absorbing it without losing the plot, how to keep your own relationship from becoming a casualty of the untold stress, how to handle long hospital admissions, endless out-patient appointments and all sorts of other meetings too. Some chapters deal with finding ways to give all your children a happy childhood, packed with ideas of things you can do even when you can't go out and about or on holiday or take your eye off the child that may stop breathing at a moment's notice. Other chapters deal with our Education System and how to get the very best deal for your child, and Social Services, about how they can help but how, like every other service, the help they can offer says much more about funding, budgets and politics than it does about the help your child actually gets. A lot of the book looks at how you slowly become the only true expert about your child, and the frustrations that can cause when no one will listen to you, but also strategies to give your feelings the best chance of being heard. There is also a chapter on food issues as well as one about coping with meltdowns.
All through the book I've put a Tips, Tricks & Strategies section at the end of every chapter. A lot of it you'd never see anywhere else, because they include some of the oddball quirky solutions we've had to make up as we went along, sometimes as a matter of urgency. It's very much a hand's-on, practical guide from one parent to another, and there are a few laugh out loud moments too scattered along the way. It's honest, and I try to tell it as it is, highlighting the appalling errors I've sometimes made as we muddled through. That's often when the best lessons get learnt. An academic, preachy tome this is not.
Inevitably, the readers will learn a lot about our family too, since I've used various real-life moments from our house to illustrate things in the book. They won't be able to fail to notice how incredibly proud I am of all three of my children, now on the brink of adulthood, and all that they have overcome and how much they have achieved, against very considerable odds.
There's also a fair amount of criticism about the services that too often fail families like ours, and how these clunky organisations often don't support the individuals who work for them in being able to reach out and offer the help we need. So often small changes would make all the difference, low-cost or no-cost solutions, sometimes these solutions could even result in the saving of thousands of Public Sector money. All it would take is a tiny shift in attitude sometimes, or a slightly different approach, and everything would join up and work so much better.
A handful of people have already read the book, including some professionals and some "Special Parents" too. All of them have said that this book should be a "must-read" for everyone who works with anyone with disabilities. If they read it, I'm pretty sure some of them won't like it, but I hope I've been fair, pointing out the inspirational, devoted care we've received as a family as well as some examples of the less good. Some of the professionals who have already been kind enough to read it for accuracy have told me that they have changed their approach already as a result of what they learnt from the book, which was lovely of them to say and made me feel really encouraged.
Another person who has been really encouraging all the way through is Rosa Monckton, who is also an expert in this field since she is a mother of a daughter with Down's Syndrome. Rosa is also a tireless campaigner for improvement in the services currently on offer to children with disabilities, and has presented some very hard-hitting TV documentaries on the subject.
Rosa has very kindly written the Foreword to the book. Her words are very powerful indeed, and I am so grateful for her enthusiasm and endorsement of this project. In her Foreword she also says that it should be read by all professionals working with disabled people, and she goes so far as to call my book "A Story of our Time".
So, it's all out of my hands now. We'll just have to wait and see what happens when it gets published. There are bound to be detractors, but I'm crossing my fingers that they will be outnumbered by the people who read the book and can feel the spirit in which it has been written.
Just because I've sent the book off doesn't mean I can sit and chill on the sofa until it gets published then swan about signing books and smiling when it comes out with a glass of champers in my hand. That would be nice.
Instead, I've now got to focus this technophobic brain of mine into mastering how to design a website, a Facebook page, and sort out all the PR for the book too. There's no point in writing a book if no one knows about it to buy it. I've being interviewed by a journalist who writes for The Guardian on Monday. We'll be talking about another aspect of disability for a different publication, but she has already asked for an early review copy of the book, and may be able to do a high-profile feature about it nearer the publication date. All good stuff.
There is also something far more important than any book that I'll be focussing a lot on over the next few weeks, in fact forever. We are only a few days away from welcoming my first Grandchild into the world. A little boy. His parents are very young teenagers, but they have both more than risen to this huge challenge, and despite their tender years, they have the makings of becoming fabulous parents. My little boy, now 16 and a whole foot taller than me, will be a Dad. Both the young parents come from strong, stable, supportive and loving families, and we will all pull together to give this little lad the very best start in life he could wish for. It also means that, despite my less than great prognosis, I will live to be a Granny.
Exciting times, new life and a new generation. Wouldn't it be just fantastic if this next generation of children grow up with the services properly in place to support both them and their families, and that those services do exactly that?
Wednesday, 5 February 2014
Coke Floats & Chemo: Born to Dance
Coke Floats & Chemo: Born to Dance: I really shouldn't be writing this now - there is so much else I ought to be doing, things from the tediously boring but frighteningly i...
Born to Dance
I really shouldn't be writing this now - there is so much else I ought to be doing, things from the tediously boring but frighteningly important Paperwork Mountain, but sod it, this is much more fun.
It's been a crazy few days with hardly a moment to draw breath, but apart from Monday when I thought I must surely be dying, it's all been totally, utterly, completely fabulously brilliant.
WM and I went off on the course I wanted to do at silly O'Clock on Friday morning. He is so good to me - he drove me to the station, left me on a bench with the luggage, drove back and parked the car, then walked to meet me. If you knew how close we lived to the station you'd realise how pathetically ridiculous it is that I can't walk there without getting puffed out and overwhelmed by joint pain, but I prefer to believe that I'm just a lazy cow with a man who treats me like a princess.
We managed to get a seat on the rush hour train, and then later on the rush hour tube from Victoria too. Jammy. We fell out of Gloucester Road tube station, and our lovely hotel, The Milennium Bailey's, was directly across the road. The course itself was just around the corner, about 30 paces away, in their sister hotel, The Milennium Gloucester.
So for the next three days, along with some really inspiring fellow trainees, WM and I were plunged into a super-intensive Public Speaking course. It was so full-on and energetically non-stop, but loads and loads of fun. The trainers managed to break the ice really quickly, and I've never experienced a room of 35 strangers bonding so warmly together so quickly - within no time at all we were a cohesive, supportive family wanting to cheer each other on from the sidelines like we'd known each other for decades.
I've been a bit shy about admitting it was a public speaking course, to be honest. I've given more speeches to huge rooms of people than I can count, and people always give very warm feedback and it doesn't generally phase me at all. But there is always that little tiny doubting voice in the back of my head that people are just being kind, and because I tend to talk about emotive subjects like my three children and their disabilities or my incurable cancer, of course it's easy to win all the generous sympathy votes in the room. I also always write a script and hold onto it like my life depends on it, reading aloud rather than speaking from the heart. I've always been in awe of those speakers who can just walk on stage and talk with no prompts or cue cards or scripts, now that really is smart.
Now that I've written a book, the received wisdom these days is that authors would be penniless if they relied on book sales alone for their income, but it's the speaking engagements to talk about the books where you can earn a living. The average sales of a book from a first time author is around 250 copies, which would barely cover all the costs. So I felt I needed proper professional training so that I have the confidence to believe that whatever speech I'm delivering, to whatever type of audience, is just about as good as it can be.
There were some very impressive people on the course - people who are real movers and shakers, with finely-honed business acumens, running very successful companies in all sorts of fields. Then there was little old me.
Over the weekend I realised just how far I've come over the past year or two in the self-confidence stakes, and it is so stupidly sad that I had to get cancer to start believing I had any skills or talents that were worth having. I walked into the room, and there were dozens of people all expensively dressed with beautifully toned bodies, and I didn't feel small or insignificant or fat and ugly like I used to feel in similar situations.
I think a lot of women will understand exactly what I'm saying. I've never had the money to dress like a fashion icon, and even if I had, they just don't make those sort of clothes for people with my body shape. I never quite made five foot tall, and where everybody else's waist are I have a huge, rounded barrel-belly instead. Then my feet have just lost the plot entirely and have spread in every direction - sideways and upwards, so that I can only buy shoes mail-order from specialist "fat-foot" internet sites. Firstly these shoes are not cheap, nor are they sexy, and mostly when they arrive they are far too tight and I can't wear them. So without decent shoes ever, it severely limits the sorts of clothes I can wear even further. I have one pair of ankle boots for winter, and one pair of turquoise sandals for summer, and that's it. Once upon a time I was a shoe-queen, with a selection to rival anyone's. Yes, I hate it, yes, I get mega-embarrassed about it, and yes, I get very insecure and panic-stricken when a pair of shoes begins to wear out in case it's going to be impossible to replace. There, I've said it. Phew.
When I was a kid and all the way into my early thirties, I was tiny, barely seven stone and with a figure to die for. Each of my pregnancies added more and more inches, and with my six miscarriages that's nine pregnancies in all, and I've never been able to shift any of it. Over time, I developed more and more body image issues, but I've never admitted it until right now this minute, instead, I got very good at putting on a mask and fronting it out. It's a woman thing definitely, that very subtle but very real moment when you can see the flicker of another woman's eyes judging you, and instantly dismissing you as unimportant and insignificant just because you have a different shape. It hurts like hell, it happens all the time and everywhere, and it flourishes and blooms particularly well at the school gate, when you collect your primary-aged schoolchildren every afternoon, standing still, waiting for the bell to ring, but on show to hundreds of pairs of judgemental eyes.
Every time it happens, a tiny little bit more of your self-esteem dies forever, until you feel that even friends and family are doing you a favour by spending any time with you whatsoever. You feel you have to apologise for even being there, you feel ugly and revolting and disgusting and worthless, to the point where you try to take up as little space on the planet as possible, or just hide away from the world altogether.
I got very good at brazening it out, and pretending confidence I just didn't have. I doubt even those closest to me have any idea whatsoever of how I really felt.
So what do you think happened when, diagnosed with cancer, I had a radical mastectomy and went bald for 8 months? This is the incredible bit, because I started to value myself for the first time in 30 years!
I've got a load of people to thank for that. When I first announced my diagnosis, I was astounded by the tidal wave of love, concern and outrage at the unfairness of it all. Then I started this blog, and before I knew it, it wasn't "my" cancer anymore, it was "our" cancer. People were so supportive, they laughed along with me as I recounted some of the cancer-absurdities that happen, and slowly I realised that actually, the only people that matter don't give a stuff what I look like, they are insightful enough to look beyond the superficial and see who I really am.
What makes me cross now is why did I waste so many years crucifying myself over things that, quite frankly, just aren't important? Why did it take cancer to open my eyes and realise that I have a load of stuff to offer the world?
What's really interesting is that now that I don't even worry about what I look like, I must carry myself a lot more confidently in some way, because other women just don't do that eye thing at me anymore. How many millions of women are still tying themselves in depressive knots instead of shining their lights brightly with panache? So so so sad.
So, back to the course. I loved every last minute of it, and I learnt how to talk from the hip, in fact I can't wait til I'm next asked to make a speech and I can do it without a written script. I think, too, that it has completely and utterly put to bed all those insecurities of old. It was very intense, lots of physical movement, and every session began with dancing on stage to re-energise; my old creaky bones let me down on most of those sessions which was very annoying, because I'm just one of those people who was born to dance.
The 3 days also had sessions on other book spin-offs I can offer so I'm also really excited by the idea of running seminars, workshops and training courses emanating from the book I've written too.
It's called "The Special Parent's Handbook" and it's partly telling the story of my family, partly passing on some of the ideas, strategies and tips that I had to learn the hard way, and partly looking at the current statutory services, set up to support and help our children, but which instead, far too often leave them short-changed and abandoned.
The Special Parent's Handbook covers virtually every aspect of parenting a child who is different, not less. Education, healthcare, and social care, obviously, but also how to negotiate a win-win situation in all the endless meetings, how to build and develop support networks, how to nurture your relationships, how to ensure your other children aren't left out or stigmatised, how to prioritise your own sense of self, and how to ensure your child has a great childhood and can develop into a confident and happy young adult.
Writing it was hard because there was so much to say on every aspect. I realised I could have turned each chapter subject into at least one book, and choosing which bits to put in and which bits to keep out was very difficult.
So, I may have incurable cancer, but I now know there are an awful lot of books still inside me waiting to be written. My dream? To create a legacy for my children in two ways. Firstly, wouldn't it be lovely if they do have to cope with losing their mum much too early, that there is money in the bank to help them springboard into adulthood? Best of all, wouldn't it be brilliant if those books help our society to understand much more about the difficulties children like mine face, and how, with just a tiny shift in attitude and understanding, how much more our children will be able to take their full places in society?
That's the blueprint, anyway, and we'll see what happens along the way.
The public speaking weekend had a fabulous title "The Ultimate World Class Speaker's Camp", and one of its many catchphrases was "Success happens when preparation meets opportunity".
Then yesterday, completely out of the blue, an opportunity came knocking which put my voice out to the whole wide world and made the catchphrase take on a whole new meaning!
It was World Cancer Day, and the World Health Organisation have published a very detailed report of a study about the projected worldwide cancer epidemic that is expected in the next 20 or so years, with a call-to-action for Governments to implement public health strategies that may reduce these expected cancers by a half. The report itself ran to 800 pages.
So what happens? Sensationalist journalists, who probably can't be bothered to read the whole thing, have almost universally twisted the findings and jumped on a bandwagon theme of "Do people with cancer bring it on themselves?". You can imagine the upset that's caused among the cancer community, and it irritated me somewhat, too. So I tweeted just once on the subject yesterday morning, saying:
"According to the National News this morning, it's all my fault I got cancer. Oh, & yours too if you get it. Unhelpful, cruel simplistic tosh".
Well much later on, I got a reply on Twitter from a BBC Journalist inviting me to take part in a BBC World Service Radio discussion programme on that very topic, now, how exciting was that! And here it is, the podcast, if you want to hear it. I'm introduced at minute 38!
http://www.bbc.co.uk/radio/player/p01qpr0y
So the only possible fly in the ointment is results day on Friday, but even if it's bad news and that spreading cancer is on the march, I'll just have to write all those books even faster than ever!
It's been a crazy few days with hardly a moment to draw breath, but apart from Monday when I thought I must surely be dying, it's all been totally, utterly, completely fabulously brilliant.
WM and I went off on the course I wanted to do at silly O'Clock on Friday morning. He is so good to me - he drove me to the station, left me on a bench with the luggage, drove back and parked the car, then walked to meet me. If you knew how close we lived to the station you'd realise how pathetically ridiculous it is that I can't walk there without getting puffed out and overwhelmed by joint pain, but I prefer to believe that I'm just a lazy cow with a man who treats me like a princess.
We managed to get a seat on the rush hour train, and then later on the rush hour tube from Victoria too. Jammy. We fell out of Gloucester Road tube station, and our lovely hotel, The Milennium Bailey's, was directly across the road. The course itself was just around the corner, about 30 paces away, in their sister hotel, The Milennium Gloucester.
So for the next three days, along with some really inspiring fellow trainees, WM and I were plunged into a super-intensive Public Speaking course. It was so full-on and energetically non-stop, but loads and loads of fun. The trainers managed to break the ice really quickly, and I've never experienced a room of 35 strangers bonding so warmly together so quickly - within no time at all we were a cohesive, supportive family wanting to cheer each other on from the sidelines like we'd known each other for decades.
I've been a bit shy about admitting it was a public speaking course, to be honest. I've given more speeches to huge rooms of people than I can count, and people always give very warm feedback and it doesn't generally phase me at all. But there is always that little tiny doubting voice in the back of my head that people are just being kind, and because I tend to talk about emotive subjects like my three children and their disabilities or my incurable cancer, of course it's easy to win all the generous sympathy votes in the room. I also always write a script and hold onto it like my life depends on it, reading aloud rather than speaking from the heart. I've always been in awe of those speakers who can just walk on stage and talk with no prompts or cue cards or scripts, now that really is smart.
Now that I've written a book, the received wisdom these days is that authors would be penniless if they relied on book sales alone for their income, but it's the speaking engagements to talk about the books where you can earn a living. The average sales of a book from a first time author is around 250 copies, which would barely cover all the costs. So I felt I needed proper professional training so that I have the confidence to believe that whatever speech I'm delivering, to whatever type of audience, is just about as good as it can be.
There were some very impressive people on the course - people who are real movers and shakers, with finely-honed business acumens, running very successful companies in all sorts of fields. Then there was little old me.
Over the weekend I realised just how far I've come over the past year or two in the self-confidence stakes, and it is so stupidly sad that I had to get cancer to start believing I had any skills or talents that were worth having. I walked into the room, and there were dozens of people all expensively dressed with beautifully toned bodies, and I didn't feel small or insignificant or fat and ugly like I used to feel in similar situations.
I think a lot of women will understand exactly what I'm saying. I've never had the money to dress like a fashion icon, and even if I had, they just don't make those sort of clothes for people with my body shape. I never quite made five foot tall, and where everybody else's waist are I have a huge, rounded barrel-belly instead. Then my feet have just lost the plot entirely and have spread in every direction - sideways and upwards, so that I can only buy shoes mail-order from specialist "fat-foot" internet sites. Firstly these shoes are not cheap, nor are they sexy, and mostly when they arrive they are far too tight and I can't wear them. So without decent shoes ever, it severely limits the sorts of clothes I can wear even further. I have one pair of ankle boots for winter, and one pair of turquoise sandals for summer, and that's it. Once upon a time I was a shoe-queen, with a selection to rival anyone's. Yes, I hate it, yes, I get mega-embarrassed about it, and yes, I get very insecure and panic-stricken when a pair of shoes begins to wear out in case it's going to be impossible to replace. There, I've said it. Phew.
When I was a kid and all the way into my early thirties, I was tiny, barely seven stone and with a figure to die for. Each of my pregnancies added more and more inches, and with my six miscarriages that's nine pregnancies in all, and I've never been able to shift any of it. Over time, I developed more and more body image issues, but I've never admitted it until right now this minute, instead, I got very good at putting on a mask and fronting it out. It's a woman thing definitely, that very subtle but very real moment when you can see the flicker of another woman's eyes judging you, and instantly dismissing you as unimportant and insignificant just because you have a different shape. It hurts like hell, it happens all the time and everywhere, and it flourishes and blooms particularly well at the school gate, when you collect your primary-aged schoolchildren every afternoon, standing still, waiting for the bell to ring, but on show to hundreds of pairs of judgemental eyes.
Every time it happens, a tiny little bit more of your self-esteem dies forever, until you feel that even friends and family are doing you a favour by spending any time with you whatsoever. You feel you have to apologise for even being there, you feel ugly and revolting and disgusting and worthless, to the point where you try to take up as little space on the planet as possible, or just hide away from the world altogether.
I got very good at brazening it out, and pretending confidence I just didn't have. I doubt even those closest to me have any idea whatsoever of how I really felt.
So what do you think happened when, diagnosed with cancer, I had a radical mastectomy and went bald for 8 months? This is the incredible bit, because I started to value myself for the first time in 30 years!
I've got a load of people to thank for that. When I first announced my diagnosis, I was astounded by the tidal wave of love, concern and outrage at the unfairness of it all. Then I started this blog, and before I knew it, it wasn't "my" cancer anymore, it was "our" cancer. People were so supportive, they laughed along with me as I recounted some of the cancer-absurdities that happen, and slowly I realised that actually, the only people that matter don't give a stuff what I look like, they are insightful enough to look beyond the superficial and see who I really am.
What makes me cross now is why did I waste so many years crucifying myself over things that, quite frankly, just aren't important? Why did it take cancer to open my eyes and realise that I have a load of stuff to offer the world?
What's really interesting is that now that I don't even worry about what I look like, I must carry myself a lot more confidently in some way, because other women just don't do that eye thing at me anymore. How many millions of women are still tying themselves in depressive knots instead of shining their lights brightly with panache? So so so sad.
So, back to the course. I loved every last minute of it, and I learnt how to talk from the hip, in fact I can't wait til I'm next asked to make a speech and I can do it without a written script. I think, too, that it has completely and utterly put to bed all those insecurities of old. It was very intense, lots of physical movement, and every session began with dancing on stage to re-energise; my old creaky bones let me down on most of those sessions which was very annoying, because I'm just one of those people who was born to dance.
The 3 days also had sessions on other book spin-offs I can offer so I'm also really excited by the idea of running seminars, workshops and training courses emanating from the book I've written too.
It's called "The Special Parent's Handbook" and it's partly telling the story of my family, partly passing on some of the ideas, strategies and tips that I had to learn the hard way, and partly looking at the current statutory services, set up to support and help our children, but which instead, far too often leave them short-changed and abandoned.
The Special Parent's Handbook covers virtually every aspect of parenting a child who is different, not less. Education, healthcare, and social care, obviously, but also how to negotiate a win-win situation in all the endless meetings, how to build and develop support networks, how to nurture your relationships, how to ensure your other children aren't left out or stigmatised, how to prioritise your own sense of self, and how to ensure your child has a great childhood and can develop into a confident and happy young adult.
Writing it was hard because there was so much to say on every aspect. I realised I could have turned each chapter subject into at least one book, and choosing which bits to put in and which bits to keep out was very difficult.
So, I may have incurable cancer, but I now know there are an awful lot of books still inside me waiting to be written. My dream? To create a legacy for my children in two ways. Firstly, wouldn't it be lovely if they do have to cope with losing their mum much too early, that there is money in the bank to help them springboard into adulthood? Best of all, wouldn't it be brilliant if those books help our society to understand much more about the difficulties children like mine face, and how, with just a tiny shift in attitude and understanding, how much more our children will be able to take their full places in society?
That's the blueprint, anyway, and we'll see what happens along the way.
The public speaking weekend had a fabulous title "The Ultimate World Class Speaker's Camp", and one of its many catchphrases was "Success happens when preparation meets opportunity".
Then yesterday, completely out of the blue, an opportunity came knocking which put my voice out to the whole wide world and made the catchphrase take on a whole new meaning!
It was World Cancer Day, and the World Health Organisation have published a very detailed report of a study about the projected worldwide cancer epidemic that is expected in the next 20 or so years, with a call-to-action for Governments to implement public health strategies that may reduce these expected cancers by a half. The report itself ran to 800 pages.
So what happens? Sensationalist journalists, who probably can't be bothered to read the whole thing, have almost universally twisted the findings and jumped on a bandwagon theme of "Do people with cancer bring it on themselves?". You can imagine the upset that's caused among the cancer community, and it irritated me somewhat, too. So I tweeted just once on the subject yesterday morning, saying:
"According to the National News this morning, it's all my fault I got cancer. Oh, & yours too if you get it. Unhelpful, cruel simplistic tosh".
Well much later on, I got a reply on Twitter from a BBC Journalist inviting me to take part in a BBC World Service Radio discussion programme on that very topic, now, how exciting was that! And here it is, the podcast, if you want to hear it. I'm introduced at minute 38!
http://www.bbc.co.uk/radio/player/p01qpr0y
So the only possible fly in the ointment is results day on Friday, but even if it's bad news and that spreading cancer is on the march, I'll just have to write all those books even faster than ever!
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!
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