Autism - what it is and how we can all better support people with autism

Autism and how to understand some of the behaviours better, along with the best explanation I can do of the Triad of Impairments and how it gets diagnosed. Hopefully better understanding will lead to more acceptance and support

Non verbal children and young people and 5 ways to hear what they're saying

Coke Floats & Chemo: Getting my Oomph Back

Coke Floats & Chemo: Getting my Oomph Back: Today, for the first time in more weeks than I care to remember, I finally got some of my oomph back and it feels good. Since late November,...

Getting my Oomph Back

Today, for the first time in more weeks than I care to remember, I finally got some of my oomph back and it feels good. Since late November, it feels like I've been hibernating in some wilderness of exhaustion, and barely able to string a sentence together on the worst days. I've had moments when I've wondered if the cancer is closing in and about to draw the curtains on me, but now I can see it wasn't really anything to do with the cancer itself, it was a wake up call that I badly needed to listen to. 

It started with my joints seizing up to the point whereby my legs simply wouldn't weight bear. For about three weeks getting from one room to another downstairs was a twenty minute marathon of pulling myself along from one piece of furniture to the next and then the wall. Leaving the house was nigh on impossible, and worse than that, I was so exhausted I didn't even care. 

Twitter twittered on without me, emails came and remain largely unanswered, Christmas approached in a blur of mind-fog and I wasn't even able to do very much in the way of joined up thinking. I couldn't follow TV programmes much less keep going in a book, it was like I was in some sort of shut-down mode. 

The walking bothered me though. Mobility has been an issue ever since I had chemotherapy three years ago, and it's also massively affected by the cocktail of cancer drugs I've been lumbered with. I've managed to get a pretty good perspective on it though, by counting my blessings and knowing that losing some ease of movement is actually a very small price to pay for being alive and loving it.  However this was on a different scale, and yes, it bothered me a lot. Eventually I swallowed my pride, went on Amazon, did the research and bought myself a walking frame. 

However I didn't have the guts to tell anybody. For days. Until it got to the point that i knew it would arrive and everyone would say "Hey, what's that?" and I was mortified about having to tell them. Well if I was mortified about telling the people I trust the most in the world, how was I ever going to be able to leave the house with my head held high as if I didn't give a stuff, and wander down to the shops with a jaunty little saunter, eh? 

So I blurted it out over dinner one night, and the very next morning it arrived. The family was marvellous, and I needed them because I didn't have the strength to assemble it myself although I gave it a flipping good try. They were kind enough not to laugh out loud when we realised I'd put the wheels where the handles ought to have been - no wonder I couldn't get the damned thing to push properly on it's maiden voyage between the dining room and the kitchen. Once they took over and put everything where it's supposed to go, everyone rallied round to be as upbeat and cheerful as possible about my new little purchase. Have you ever seen anyone skateboard towards the front door on a walking frame? I have. Hilarious, and they did their best, but it still hurt like hell and I was still too proud to really let on how close I was to dissolving into wretched tears about the whole damned thing. 

I've done it though. I've been out in public with it several times, and eventually I'm learning to develop yet another new perspective about it. I have a choice - either go out and be a part of the world with a helpful piece of metal on wheels, or become a housebound hermit. No brainer really, and one day I might even love it. 

A few days before Christmas things started easing. I was able to get up and downstairs without crawling or bum-shuffling. Wow. It felt wonderful. I could nearly walk all the way to the kitchen from the front door without having to stop and catch my breath. Fantastic. 

Things went from good to better for three whole days, long enough for me to do speed-shopping on Amazon for presents, and then I got ill all over again. A cold turned to a chest infection and lingered for for four full weeks, determined to put me in my place and make me come to some pretty life-changing conclusions. At least with the chest infection the brain fog cleared and I was able to think. I was even able to read and managed more books in less than a month than I got through in the whole of last year. 

The thinking - now this is the exciting bit. Pennies started dropping, lightbulbs started lighting, and everything became loads clearer and much more possible - life wasn't over, but it has to be done a little bit differently to make sure I don't ever hit quite such a wall of exhaustion again. 

So what have I learnt? Lot of things! Here are just some of them. 

1. I've got secondary breast cancer and I'm not 22 anymore. So kidding myself that I can cope on 5 hours sleep or less a night isn't going to work long term. Some days over the past couple of months I've slept for over 15 hours in one stretch, because I needed to. I've even worked out that I'm more productive and can get much more done without having to stay up half the night to achieve it. 

2. I've been doing too much, taking on too much, and I've worn myself into the ground. 2016 is the year I'm going to learn to say no sometimes. 

3. I'm very clear about what I want to do to improve things for the next generation of vulnerable adults and children with special needs and their families. I'm much more focused, I'm working on a business plan, I'm redesigning my website, and I'm looking into starting up a Social Enterprise business to put things on a much more solid and settled basis. That way, one day there could be a team of people working with me towards the same purpose and I won't have to do everything all by myself. One day, if it goes well and I'm no longer around to do the work myself, other people could carry it on. 

4. I need help now to cope with all the admin. So I'd like to introduce my first helper, my wonderful daughter, Francesca, who is going to take on one or two of the projects we want to achieve. We're working together for a few weeks to see how it goes, and so far I'm loving it and I hope she is too. 

5. Shoes. I love them, but finding ones that fit now my feet have spread to the size of dinner plates is not easy, and nor do they make those sizes with high heels or in bright shiny colours. For the past two years I've only had two pairs of shoes, one for winter and one for summer, simply because I'm such a funny shoe size now. So I spent a whole afternoon on line, I found some specialist shoe shops, and I ordered and ordered and ordered. So exciting now to be the owner of 5 pairs of brand new shoes that all fit and don't pinch. OK so they all look just like the sort of convent-issue shoes that the nuns in The Sound of Music might have worn, but maybe I'll start a brand new fashion. 

6. I'm a writer who is massively into social media and who may have a limited time left on this fabulous planet.  So why have I been working on a limping old clunky PC that takes what seems like a lifetime and a half to open pages and crashes several times a day? I've been telling myself I can't afford anything better, but the truth is I can't afford not to. So I'm now the proud owner of a state-of-the-art laptop that whizzes from screen to screen in a nano-second. Consequently I'm buzzing along too and able to work much more efficiently and without the tearing-my-hair-out technological frustrations I've been coping with for the past two years. 

7. The laptop is a shiny bright red. So are my new pair of Christmas furry slippers. They nearly make up for the nun's shoes. It's so last year if your slippers don't match your laptop, don't you think?

8. I've read and I've read and I've read. Among the novels that I needed to take me away from real life as respite, I've read business books and cancer books too. Radical Remission by Kelly A Turner has changed the way I look at everything. It's helped me start to think about implementing new ideas which just might increase my chances of staying alive a good deal longer. I'm already on borrowed time. When they discovered my cancer had spread my prognosis was to live for another 26 months. That date came and went over 6 months ago.  With the help of this wonderful book, I'm now aiming to extend that original 26 months into another 26 years. Yay. 

9. Whether I make it or not is immaterial. What's important is that I'm still here, I'm still alive and I'm still taking part in a hundred and one different things and living life to the full. Over the past few weeks I've had moments of doubt about whether or not the grim reaper was lurking. Well I'm pretty sure he's gone away for the time being at least. But I'm not going to make his job easy by twiddling my thumbs and waiting for him to come back. He'll have to wait for me. Ha! 

10. Working and trying to change the world is all very good, but life is about having fun and spending time with people we care about too. Pacing myself and having some balance is vital, and I've been guilty of throwing myself headlong at everything over the past year or so - it's an easy trap to fall into when you think your days are numbered and you feel there's so much to do. I've still got goals I want to reach, but I'm now more likely to stop for a coffee on the way. 

If you are one of the many people who have been waiting weeks for an email from me please accept my apologies, and I'll be in touch again very soon. I'm back now, and raring to go, but at an ever so slightly slower pace. You might even get to meet Francesca and my walking frame - I really must find a cheery new name for it. 

      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
Learning Disability Today - Learning Disability Champion 2015

Author of "The Special Parent's Handbook" 

Hospital Care - What I would Wish For

When Jim Blair, The Nurse Consultant responsible for the care of everyone with a Learning Disability at Great Ormond Street Hospital asked me What Would I Wish For, this is what I said. The one single element of hospital care that would have made all the difference. We once met a wonderful Paediatric Consultant who I will never forget. 

If you'd like to know more about my thoughts on the NHS, you might enjoy reading my most recent post, "Serendipity and Social Media as an NHS Change-Maker"

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...

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. 

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

I love the NHS. I know it well - too well - and without it I wouldn't be here and nor would my son, Toby, or my wonderful Dad. However I'm a realist, and I know it's not perfect, with some very good bits and some very less than good bits too. More often than not it's down to the individual staff member to whom you are assigned, and their ability to engage in a compassionate and caring way. 

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

Some staff are less kind and less patient. Eyes roll to the ceiling, harsh words are spoken, and thoughtless things happen. As we know, there are difficult people everywhere, but those within the NHS can have a devastating impact on a patient’s well-being.

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?

Neither encounter with these two individual staff members was pleasant, yet I don’t blame them. Kindness has never been prioritised as a stand-alone essential element of care within the NHS, and it's hard to measure, so it simply might not occur to everyone that it has both value and importance.

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

There is a new initiative towards "Co-production", whereby patients are invited to work with NHS staff to develop new ways of doing things together. There is a tremendous new-found will within the NHS to involve patients in a lot of what they are doing, but it's not working. Again, a lot of patients can instinctive see why it's not working, but there is no mechanism to feedback to the NHS, or to help them find better ways of making co-production work. 

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

What we are seeing happening already on Twitter is the spirit of what can happen in the NHS. Individual staff members getting their share of some power back, having a voice and coming together, supporting each other in kindness and being a united force for good. 

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

I want to help. If I hadn’t been doing so much reading, thinking and recovering, I’d have finished designing my new series of workshops by now. Based around the themes of my book,  “The Special Parent’s Handbook”, they are aimed at groups of NHS Employees, to enable them to better understand the aspects of care which make a real difference to patients. The workshops are designed to share stories, to give participants an opportunity to step inside the shoes of a patient or a relative, and to really get to grips with important issues such as working with families as a team, kindness and back-to-basics simplicity. The series of workshops will cover different topics of interest to particular cohorts of staff such as Paediatric Clinicians, Commissioners, Frontline Medical Staff and Student Clinicians. Additionally, there is one workshop to build confidence among staff for when their patients have and Intellectual Impairment or Autism, and another workshop looking at better ways to build Models for Co-Production. Maybe I should write another one about the importance of change and how social media can lead to where we all need to go?

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

There’s a great group of nurses on Twitter who use the hashtag #wenurses. Earlier this week I joined in their weekly online chat and they were so welcoming. The topic? "What tips would you share to encourage other nurses to tweet?" Some great conversations followed, and really helped me to sharply focus on the main issues.

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

     

Yvonne Newbold named by HSJ as a Top 50 Inspirational Women in Healthcare 2014

Author of "The Special Parent's Handbook" 

Why Breast Reconstruction isn't for me

Coke Floats & Chemo: Breast Cancer Acceptance, please, not Awareness: Why breast reconstruction isn't for me

Why breast reconstruction isn't for me

Am I the only person who, whenever I hear those three particular words together Breast and Cancer and Awareness, wants to roll my eyes to the heavens and find myself heartily wishing that Scottie was in those clouds and eagerly about to beam me up? Maybe the phrase served a purpose 20 years or so ago when nobody liked to mention the "C" word, and women weren't reminded during every scroll of their Facebook feed of the importance of regular self-examination. 

We've moved on now though, and "Breast Cancer Awareness" has become a meaningless, overused and cliched excuse to talk about tits in the most puerile, insensitive and cheap way possible online, all the while pretending that it's somehow showing women like me compassionate solidarity. Hello? It's not. 

If you want to hold a coke bottle between your breasts, feel free, please go ahead, but don't tell the world you're doing it for me. Even if I wanted to, I'll never hold a coke bottle or anything else between my breasts ever again, because I haven't got two of them anymore. 

Really - only one? I see the question so clearly in their eyes all the time, and then there's often the inevitable follow-up question carrying a very subtle note of disapproval - "So why didn't you have a reconstruction.... didn't you want one?" 

There is a very clear but usually unspoken sub-text. I'm somehow letting the side down because I'm lopsided. I obviously didn't do it properly, I'm still broken and I've failed the breast cancer contest. 

Losing a breast was hard, but it was by no means the biggest thing I've lost since I had breast cancer, nor was it the hardest. Losing a breast was easy peasy lemon squeezy compared to three lots of major surgery, five months of chemotherapy and the third degree burns I got from radiotherapy. Yes, I cried for over a year quietly and privately about my mutilated body, and I couldn't bear to look in a mirror for a very long time, but it was still easier to cope with than the treatment.  

To be honest, I was horrified by my own emotional reaction to it. I was no beauty queen, I was well past my prime and I'd always considered myself the least vain person imaginable. In those last few weeks before the operation I was very matter-of-fact about the whole thing and I thought that that practical pragmatism would carry me through whatever traumas lay ahead. 

Instead I was crushed. Totally, utterly and comprehensively. I was a wobbly, pathetic, mushy mess about the whole losing a breast thing for months, in fact probably considerably longer than that. 

I also felt overwhelmingly ashamed of being so ridiculously fragile over the whole missing breast thing. I didn't tell a soul, I thought they'd laugh at me for being so bothered about it. 

At first, I fully intended to get a new breast, but it wasn't ever going to be easy, and it would have meant that I would have been even more significantly mutilated. My breast cancer was in both breasts, and in the one they removed the tumour was so large, 14.4cms across, that they had to remove so much flesh that they struggled to leave enough skin to stretch across my ribs. My sharkbite-like scar is 12 inches long, trailing from where I once had a cleavage, past where my boob used to be, then under my arm and it finishes about three or four inches around the corner, halfway to my spine. 

I had developed a serious infection just before my mastectomy surgery, which completely ruled out immediate reconstruction, and that wouldn't have been an option anyway - if you are going to definitely need radiotherapy, they normally won't even consider reconstruction beforehand. 

Now, though, I'm so pleased I never bothered, and that's something most people simply can't fathom. So just in case you're reading this desperate to know why but far too polite to ever ask me, these are my reasons for staying "Half Flat and Fabulous".

1. My boobs tried to kill me, they aren't my friends. Why on earth would I want another one? 
2. I've been dealing with having a very serious illness for over just over three years now. I've had extensive surgery, chemo, radiotherapy and I'll be on quality-of-life changing drugs for the rest of my life. I so love the good days. Why would I want to waste three more precious months of my life feeling like death-warmed-up while recovering from another operation? 
3. I love not having to wear a bra ever again. 
4. To create a new breast for me would entail an 8 hour long major operation with very real risks attached. 
5. The operation itself is gruesome, with transplants of flesh and blood vessels from other parts of my body leaving new and livid sharkbite scars. There are loads of potential complications, and the whole thing might not be successful, which would mean I'd be left battered, bruised, scarred and weakened and without a brand new breast to show for it. 
6. What happens if the cancer came backt to where it used to be? All that new flesh plonked on top of where it might be growing could mean I wouldn't notice any new lumps in time. 
7. Reconstructed breasts often feel very different, many women have little or no sensation in their new breasts after reconstruction. For me, the risk of going through all that surgery to achieve a new breast that might have no sensation in it whatsoever seems a bit pointless. 
8. Before I had breast cancer, my body image was appalling. I always felt so fat, so ugly and so unattractive that I felt I was an "also ran" in the human being stakes. Like many women, I felt that unless I was gorgeous and slim I had no worth as a person. Since I was diagnosed, all I've had is bucketloads of love and warmth and goodwill from people. For the first time in my life what I look like simply doesn't matter a jot, I now understand that other people value me for so much more that what they can actually see, and I've learnt to feel good about myself for the first time ever in my life. I have been so swamped with kindness and concern that I have finally realised that if they can accept me regardless of my looks, I can and should be happy with who I am and what I look like. My self-esteem and confidence are no longer linked to my superficial appearance or the number of breasts I own, and hallelujah for that. 
9. It's still wonderful never having to wear a bra again. 
10. Ten months after my initial diagnosis, they found that my breast cancer has spread to my spine. Staying alive and being happy now transcends all else. I have other and different priorities, and pretend breasts don't even feature in my life anymore.
11. Now when I look in the mirror I'm proud of what I've been through and I'm happy with who I see. My scar is now my badge of honour, and it's part of me and who I have become. I actually quite like it now. It took a long time but we got there. 
12. Having a new breast can't turn the clock back and undo the past three years. It won't make everything all right again or wipe the slate clean, and thank goodness for that. Cancer has changed me, it has altered the way I look at things, sometimes in a good way and other times not so good, but this is me now, this is who I am. 

My reasons are right for me, but they won't be right for everybody. Maybe if I'd been prettier or thinner, maybe if I'd had the option of an immediate reconstruction, maybe if my cancer hadn't progressed to my spine, I too might yearn for a new breast to feel whole again. 

For me though, I've never felt as whole as I do now, and that's a great feeling of liberation. I no longer feel pressured to look fabulous, I'm not in that pitiful self-imposed race of gorgeousness anymore. That was a race I was never ever going to win, so I now don't have to set myself up to fail every day even before I've got out of bed. 

Reconstruction is the absolute right thing to do for many women, and their decision is every bit as valid as my decision is. As long as it is really their decision and they don't feel pressured by societal norms and the expectations of conformity. 

Breasts are perceived as an iconic symbol of being a woman, a feeling that is sadly echoed in every silly attempt to hold a coke bottle in a perfectly structured cleavage. That's why women like me, whether we opt to have a reconstruction or not, are hurt and offended by so much of the "awareness" stupidity. Breast cancer acceptance is what we'd really like, but the Facebook photos of whatever that looks like would never quite catch on. 

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

If you'd like to read my most recent post on my Special Parent's Handbook blog, it's about taking the stress out of cutting children's fingernails

Yvonne Newbold named by HSJ as a Top 50 Inspirational Women in Healthcare 2014

Author of "The Special Parent's Handbook" 

Coke Floats & Chemo: Life as it happens

Coke Floats & Chemo: Life as it happens: Health scare Did you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorl...

Life as it happens

Health scare

Did you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorly on and off for the past couple of months or so, and then it all got very serious and became infected. I'm now waiting for biopsies, operations and a proper diagnosis of what's going on. I think I should have had a letter weeks ago, but I just haven't had a minute to chase it up. When you have stage 4 cancer, although it's nice to have things to take your mind of things, I've had so many other things to worry about lately that the whole cancer thing really has had to go to the back of the queue. Tomorrow, I promise I'll make that phone call and see whether or not I've been forgotten. 

Please don't ask in too much detail what it's all about. I try to be open and honest, but this is just too embarrassing to talk about and expect you to keep a straight face. It's bowel related. Ha ha ha not. It was hard enough having dozens of doctors taking it in turns to peer intently at my boobies in the last few weeks of having two of them. Now they want to peer at my bum. Dignity and decorum go out the window completely with cancer, and I don't think you ever get used to it or comfortable with sharing the best-hidden parts of your body with total strangers, no matter how well qualified those total strangers are. The idea of talking about it outside of a doctor's room fills me with cringing dread, so I need to quickly find a way to say something without telling anything, and for someone as naturally open as I am, that's the very hard bit. 

Beyond my control

Never mind, there's so much else going on that there's plenty of other things we can talk about. I'm on the brink of exhaustion all the time and stressed up to the earlobes and not very well, but when life happens you have to be there, take it on the chin, deal with it and cope whether you want to or not. Sometimes I look at the way things are in my life and it's hardly any wonder that cancer might be winning. A little bit more control over my own life would be very nice sometimes, to be able to choose what I do and when, make my own priorities every day, and actually be allowed to see them through to fruition. Instead, I'm fire-fighting, responding to crises, and mainly sorting out the mess other people have imposed on my life. It gets wearing, it's very frustrating, and it's something that's really hard to accept, even though I've been living a version of this life from the moment Toby was born all those years ago. When a child is as profoundly disabled as Toby is, you have to rely on other people. When those people don't always join up their dots, somebody has to, or Toby will pay the price. What mother would let that happen? It's a joyless, thankless task, and it means that parents in my situation come from a different starting point. Before we can start doing the things that we want to do, the things that make our souls sing, we're sorting things out, putting wrongs right, making things happen - but sometimes the sheer scale of keeping all those essential balls in the air just spills over into ridiculousness. 

Another move for Toby

Toby has to move care homes. Long story, and maybe when the time is right I'll do a longer post about it, but it's dominated virtually every waking hour since Christmas week.

Care-home hunting is like a full-time job for an entire office-block of people. I've read 70 CQC reports. I've spoken to 50 care home managers. I've visited 12 care homes. I've written a report for each of them for our Local Authority, as well as a more generalised report about the search itself in terms of expectations and success-critieria. I've had countless meetings with Toby's social worker and other members of her team. The emails I've written and the forms I've filled in would rival the word-count of War and Peace. 

I've taken Toby back to visit the best places we're seen. That was emotional. Suddenly this whole care home search became real - it stopped being a paper-exercise and became something much bigger. It's a huge responsibility. Toby cannot talk, he doesn't understand that his little world is about to be thrown into turmoil all over again and he will have to readjust to new people, new routines, a new environment and different ways of doing things. 

Luckily there was one place where he just looked so happy and relaxed. The staff responded to him with warmth and enthusiasm, and he soon had them playing games his way with him. While Malcolm and I chatted to the care home manager at the kitchen table, Toby took himself off and wandered around, until finally settling down on an armchair near some of the residents, perfectly content and relaxed. It's the closest I could get to involving him in the decision-making process, but it worked better than I could ever have expected. 

That's the place we want, the local authority have asked them to start their assessment on him, and the ball is finally beginning to roll. It's taken nearly 3 months to get here, and there are still a lot of things that can go pear-shaped between now and him moving in. They may not want him, although they dress it up in nicer words along the lines of "unable to meet his needs". This place has an upstairs bedroom, so he has to have an occupational and physiotherapy assessment to ensure the staircase is safe for his reduced mobility. 

Yesterday he hurt his foot badly and today he still can't walk, and I can see a shadow of impending doom looming unless he fully recovers by the staircase assessment day on Thursday. If he passes that test, there are still about another 100 things that could go wrong, and that's before we can even begin to think of the funding fight that has to be overcome before anything happens. I'm holding my breath and crossing my fingers. I just hope I don't have to add banging my head against a brick wall to that list before the next couple of weeks are over. 

Fire-fighting - literally! 

Then, three weeks ago, my father accidentally set fire to his house. That was a huge shock, but luckily, despite some minor health-related smoke-inhalation problems, Dad got out safe and well. He's living in our house - he and I haven't lived together for over 30 years. It's all a bit surreal, particularly when he tells me off for things like being on the phone for too long (Dad, you were allowed to do that when I was 14 and you were paying the phone bill, but I'm a grown-up now and this is my phone....!), but he makes the best cup of tea for miles, and we're all thoroughly enjoying having him around. 

Trouble overhead

On top of everything else, just to make life even more interestingly diverse, directly behind our house they are building a new development, which hasn't been much fun for the last couple of months. The noise is horrific and relentless, and so close to our house it we can feel every thud and clatter. Sometimes the house shakes, and sometimes it's so bad you can feel your own spine revererating. The builders working on the site don't seem that competent or cautious either. So far, due to their negligent drilling through things they shouldn't be touching, we've lost electricity for whole days at a time, we've lost our internet connection and our land-line telephone for nearly a week, and they also cut through the cable that brings TV into our house. Oh, and the gas leak too - a whole sleepless night of the gas board noisily digging up the road while they had to fix the damage the builders had done before anything really serious happened. 

Now, the construction company wants to erect a crane which will loom over us for the best part of the next three years, swinging freely over our house and garden. So more meetings, emails, phone calls, emotion, discussion, rallying of the troops among the neighbours ..... and we still aren't any further forward. It looks like it will happen, we'll have to sign an agreement and get a few paltry pennies a month for our co-operation, but with it will come a whole new raft of worry as to whether they have secured every load properly or will something heavy fall and flatten our houses. 

A & E family day out

Yesterday both Toby and Malcolm ended up in A & E. Toby with this mystery foot injury - his third similar injury since he's lived away from home. Malcolm is very poorly indeed, I've watched him get steadily more and more unwell over several days and yesterday I took one look at him and I just knew this was serious. They managed to bring down his raging temperature, they gave him i/v antibiotics and a litre of saline through a drip, and now he's back home but still really unwell. While I've been writing this, I've had to go over and see Toby too - he's started being sick. Is it related to the foot injury in some way? How much pain is he in and can pain alone cause vomiting? Too many questions to try and second guess. I'm going over again in a couple of hours to decide if he needs to go back to hospital tonight or if it can wait til the GPs surgery is open in the morning. 

Let's blame mum

It was Toby's second trip to A & E in 5 days. The one on Monday caused no end of stress. No one at his current care home can change his gastrostomy feeding tube, so I always do it. No big deal - I've done every change since he was a baby - I could do it in my sleep and standing on my head, so I thought nothing when they asked me to put a new tube in on Saturday.  However, by Monday, some sort of miscommunication whispering campaign seems to have got going, and specialist nurses and our GP were demanding that the care home staff took Toby straight to hospital to ensure there was no internal damage, and that I'd changed it properly. Hello? Why? What? 

Suddenly I was plunged into the middle of a nightmare where it seemed that none of the professionals involved with his care trusted me to change his tube. Phrases like "compromising his safety" started being bandied about, and next I was being interrogated over the phone by someone demanding to know what training I'd had and how I could prove it. These things are serious - I know from bitter past experience that before you know where you are a parent is up in front of some local authority kangaroo court on a trumped-up safeguarding charge. By the time it gets that far, all the professionals will have closed ranks, and the finger is firmly stuck in the "pointing at mum" position, which means that nobody else can possibly be implicated in anything whatsoever. 

So everything had to stop for the best part of three days while I tried to unravel the chain of events that had escalated such a minor detail into some sort of life-threatening emergency with me somehow portrayed as the vilified perpetrator. To be perfectly honest, fuming, incandescent with rage and livid doesn't come close to the fury I was feeling, yet in these situations fury gets you nowhere. Instead, you have to swallow the anger, present as Mrs Nice and Utterly Reasonable, and use every last vestige of tact, diplomacy and social skills that you can cobble together as quickly as you can. Yes it took three days of phone-calls, emails and research to get back to square one, which was that Toby's tube was fitted perfectly correctly, he had never been put in any danger whatsoever, and that I am perfectly competent, capable and responsible to change each and every tube that ever needs changing again. What a total waste of time. 

However, this week I did hear of another looming safeguarding meeting, this one about Toby's second unexplained foot injury incurred at his current care home. Another half day stolen away, more reports to read, things to get my head around, mustering my wits about me so that I can ensure that when the music stops the fingers aren't all pointing at me. They can't be, I wasn't there, but sometimes people will say whatever they have to say to shift blame and wriggle out of responsibility. 

My workshops launching

What I'm really trying to do is to find time to write my next book and launch my new series of Workshops, but it seems like the world and his family want to conspire to stop me ever getting on and earning an honest crust. That's the fun, exciting stuff, the stuff that makes my soul sing, gets me excited and fills me with energy. I'm sure it's what's keeping me alive, whereas everything else just drains me of energy. 

If I could just win a little bit of time back so I could focus and really get this off the ground, I'm sure everything else would fall into place. Instead, I'm walking through treacle sorting out other people's messes. Of course, when they are Toby related, I wouldn't trust anyone else to sort them out, so I have no choice, but that doesn't mean it's any less frustrating. I've got over a hundred lovely people who are waiting for replies to emails, tweets, messages and texts, but there aren't enough hours in the day. As it is I'm lucky to snatch more than 6 hours sleep most nights, and trying to work in a full house of lovely chatty people all day long isn't easy either. 

The Workshops? Oh I'm so glad you asked! I don't know how long I have left on this planet, and I want to spend as much time as I possibly can in helping to improve our Public Sector Services be more responsive and appropriate to the families who most need their help. I've designed a series of workshops for parents of disabled children. If we can make families stronger and more resilient, they will be better able to assert themselves with the teams of education, health and social care professionals who work with their children. 

I'm now working on a parallel series of workshops for the professionals. When you have a child like Toby, it can all get very "them and us". That leads to mistrust, miscommunication, and poorer outcomes for everyone - stress for the adults, poorer decisions for the children. 

We're moving into an era of less public sector spending, so we have to do it differently if we are going to support the families most in need. I see a future where kindness, partnership working and simplicity dominate how things are done rather than wasted resources being squandered on policies, procedures and processes, with families back in the centre of things instead of endless committee meetings and tick boxes. These simple changes cost nothing, in fact they save money, but the difference they could make is priceless. 

The nice bits

There have been other fab things going on - here's a whistle-stop round-up. 

A wonderful Saturday lunch with my breast cancer twitter-sisters! They've kept me going through thick and thin for nearly 3 years now, tweeting support, encouragement and love in 140 character bursts. Well it was a highlight of this decade to actually sit down together for a whole afternoon and natter, chatter, laugh and hug the hours away. 

I also met a very special lady while she was on a rare day-trip to London. Marie Ennis-O'Connor has been there for me every step of the way since I was first diagnosed with breast cancer, through to starting to write this blog, and she has been holding my hand and cheering me on all the way through The Special Parent's Handbook Adventures. Marie was everything and more that I thought she'd be, and we hugged so hard to make up for the three years we'd waited to say a proper hello

Earlier this week, I was invited to a really inspiring evening out, and Malcolm and Francesca came along as my guests. It was the Sutton Community Awards, where local people are the stars of the evening. I was both honoured and humbled to be nominated for The Outstanding Achievement Award 2014, there I am in the front row proudly holding my runner's up framed certificate. 

There was a very special bonus during the evening. A very long time ago, when Toby was tiny and fighting for his life on a daily basis, we were featured fairly regularly in the national press, and we appeared in charity brochures. One morning, a really lovely photographer patiently waited while I tried to ensure Toby was breathing sufficiently well enough to come off his oxygen for just long enough to take some good photos. Last year I found my copy of the photo that very kind photographer had taken that morning and I just knew - it had to be the iconic photo on the cover of The Special Parent's Handbook. The photographer's name was printed on the back of the photo, so I googled him and rang to ask his permission to use the shot. We ended up talking for ages, his warmth and enthusiasm completely undinted by the passing of what was nearly 20 years. If you read the book, please look out for his name, Richard Bloomfield, in the acknowledgements. Guess who was the official photographer on Tuesday at these awards? None other than the lovely Richard! Seeing him again and catching up was like the jewel in the crown of an already very special evening. In case you haven't seen it, here's Richard's original photograph taken that morning of Toby and me. 

It was the week of Awards for the Newbold family. On Thursday I was the proudest mummy when Adam won a Jack Petchey Award for his support work in rehearsals and on stage with Action Replay, the adult learning disability drama group under the Savvy Theatre Company umbrella. Adam was one of King Arthur's knights, and make sure that all the other knights were always on stage with him, in the right places and saying and doing the right things. 

Here's Adam collecting his Jack Petchey Award

And here is is again, as a Camelot Knight in a Princess Hat. 

Sadly, I was too ill to actually be there - I had the tail end of whatever bug has laid Malcolm down so low, and I would have embarrassed him like crazy by coughing all the way through the ceremony. 

Feeling rubbish

Lately, I've been ill too much. Not only is this extra unmentionable health problem bringing me down lower than I like, but I'm catching every bug that's going and not shifting them as quickly as I should be either. Some days I wonder if this is the beginning of the end, other days I think I'm just on overload and it's nothing whatsoever to do with cancer, more to do with curved balls coming faster than I can catch them all. Whatever, today is March, Spring is on its way, and I'm determined to plan exciting times ahead for as long as I possibly can. This month alone, I'm speaking at 3 conference, and bookings are already coming in thick and fast for the Workshops. Later this month I'm off to North Wales, and I'm getting enquiries from all ends of the country and even Dublin. 

Letting everybody down

Meanwhile there are so many emails, tweets, messages, facebook comments and phone calls that I'm not getting time to reply to - every day the list mounts up and up and there are over a hundred lovely people I go to bed every night feeling guilty about because I haven't got back to them yet. Huge sorry if you're one of them. You've probably gathered that some days I'm barely keeping it all together. Eating and sleeping fall off the radar too several times a week which isn't very clever, but there just aren't enough hours in the day at the moment to fit it all in. Can't wait til things ease up, and I hope I don't lose too many friends in the meantime if they think I'm ignoring them. 

And next....

Tomorrow, I'm organising business cards and banner stands, and I'm struggling over how to word them to represent what I do without blowing my own trumpet in a terribly unBritish fashion. Earlier I asked Francesca for some iconic words that describe me. "Annoying", "Short" and "Crazy" was how she thinks I should describe myself. Oh, and "insufferable". So if you know anyone looking for a conference speaker who is insufferably annoying, short and crazy, I'm your man! 

It would be great if you'd like to keep in touch through my FB pages 

Coke .Floats & Chemo Page  for cancer information and support

Special Parent's Handbook Page supporting special needs parents