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" 

Coke Floats & Chemo: Needle-phobia - a major cause of premature death?

Coke Floats & Chemo: Needle-phobia - a major cause of premature death?: Needle-phobia and Cancer I've got needle phobia. I've explained all about why I developed it and how it affects me in a previous b...

Needle-phobia - a major cause of premature death?

Needle-phobia and Cancer

I've got needle phobia. I've explained all about why I developed it and how it affects me in a previous blog post My Needle-Phobic Past  . If you read it you might get an inkling into how terrifying it is for someone like me to cope with a hypodermic needle. I've also given Keynote Speeches at a number of Medical Conferences on the subject. Most people regard needle-phobia as ridiculously laughable and trivial - I can assure you it's not. 

I also have Stage 4 Cancer, the incurable version of cancer that has started to spread and will inevitably kill me prematurely. It means I have been on continuous cancer treatment for nearly three years and I'll be having treatment for the rest of my life. The only reason they will ever stop it is if the cancer has won, and there will be nothing more they can do. That's the reality of my life. It's not how I wanted it to be but that's how it is, and I cope with this knowledge by refusing to focus on it, and enjoying every day as much as I can. 

However, continuous cancer treatment and needle-phobia together isn't a great combination, and over the past three weeks they have joined forces and completely floored me. It's a long time since I've felt low all the time like this, and coinciding with Christmas probably made it all seem even worse. 

PET Scans

When you have cancer that's as life-threatening as mine is, you need a PET scan every 6 months so they can keep an eye on how it's progressing. That's how they can tell how to treat it. They aren't able to cure me, now it's all about prolonging my life, and I'd like them to be able to keep me going for as long as they can. For the PET Scan to work they have to inject a contrast solution into my bloodstream. 

For every single other injection, blood test or intravenous procedure I need, I have a Portacath fitted which they can use. The Portacath is a permanent medical device sewn into my muscle under my skin, that connects with a major vein just before it reaches my heart. They still have to pierce the skin with a needle to use it and I don't really like them doing that at all, but somehow I manage to keep my needle-phobia under control as far as the Portacath is concerned. I still need a mild sedative beforehand as well as some local anaesthetic cream, but somehow the Portacath doesn't really trigger my needle-phobia response in the same way as hypodermic needles do. 

However the PET scan injection is different. They have to fit a cannula into a tiny vein in my foot. Except I have the worst veins in the world, and a cannula simply won't fit. So they try again and again until I'm in such an awful state that they decide to stop trying any more. 

What happens

Despite my needle-phobia I really do everything I can to co-operate.  Just like every other patient I turn up, I stick out my arm or my foot or whatever, I  grit my teeth and I never complain. I also always warn them that I will become extremely distressed but I ask them to ignore it, and to do what they can to just go ahead and do what they really have to do. 

Then it happens. A harrowing howling noise somehow comes out of my mouth and doesn't stop, followed by sobs that make my body shake, and eventually the sobbing stops me being able to breathe.  Even though I've always warned them about my reaction, the medics  always look at me like I'm a madwoman.  They don't meet many of me, and although they try to be sympathetic they find it very hard to get their heads around. While I'm howling in terror they're often gasping in horror - not a great start to working together to find a way through this. 

Interestingly, I have never asked them to stop, it's always their decision to call it a day and say that enough is enough. By that stage they have often made several unsuccessful attempts to insert the cannula, and I'm in a terrible state. 

So I don't get the PET scan. Instead I'm given a new date to come back and go through the whole ordeal all over again, and the cycle goes on and it feels like I'm being set up to fail all over again. In my case, it's almost a year since I last managed to go through with it. Meanwhile what on earth is the cancer doing inside me?

I had another awful PET Scan attempt the week before Christmas, and I was given a date to do it all over again two days ago. In the intervening three weeks I couldn't stop bursting into tears every single day.  I don't cry normally - hardly ever, but something has happened and I just can't think of anything else apart from the terror of the whole caboodle, and now the sheer dread that meanwhile, the cancer might be advancing like crazy and nobody knows, and by the time they find a way to do this scan it could be too late to throw any new treatment at it, and that will be the end of me. 

So I turned up earlier this week and guess what? The whole thing happened again. 

Embarrassed and furious

I'm furious with needle-phobia. I'm furious at myself for my inability to cope with needles, and I'm beginning to get frustrated at how needle-phobia is so poorly understood among healthcare professionals too. 

I've done everything I can think of to try and overcome these fears. I understand the science and the necessity for these procedures, and I do everything I know how to to make it happen despite my fears. I know that my behaviour may also be distressing for health professionals so I do everything I can beforehand to explain what's likely to happen. I'm always as co-operative as I can be, and because I understand the importance of what they need to do I always keep appointments and I do all I can to be courteous, polite and compliant. 

Needle-phobia is a stupid, crazy, irrational fear to have, and I think it must be the most embarrassing of all the phobias. I've done everything I can think of to overcome these fears - I've had counselling and I've also read extensively about intravenous access procedures hoping that a better understanding might lessen the fears. I've also had hypnotherapy, EFT, NLP and about a dozen other types of therapy, but absolutely nothing shifts it. 

The medical perspective

Needle phobia is an accepted medical diagnosis, but doctors and nurses have no training about it, and they simply can't fathom how debilitating and real it is. To them, blood tests and intravenous injections are a minor and routine backdrop of their working lives - they can't get their heads around the fact that some people like me are simply terrified. People like me and people like them are poles apart in our experiences and our thinking, and it's telling that I've been having these reactions over and over again at the same hospital, yet every time they are bewildered and shocked, and I'm bending over backwards with my grovelling apologies. The look in their eyes is often as hard to cope with as the needles are. I feel judged, I feel belittled, and I feel pathetically stupid. Sometimes I even feel their disparaging pity. 

I'm not a wimp. I coped with a radical mastectomy with barely any pain relief. The cancer treatment itself affects my joints causing severe pain and a huge reduction in mobility, but I just accept it and get on with it. I don't allow cancer to take centre-stage in my life and there aren't many people with a more positive attitude than I have. I'm a strong, feisty, intelligent woman.... until it comes to needles. 

I'm not alone, but I am unusual. Most people who have the type of extreme needle-phobic reactions that I do simply don't accept medical treatment. They don't make appointments with their GPs to talk about new lumps or bumps or other symptoms. They can't engage with the medical profession, so great is their fear of needles. It's sometimes called "White Coat Syndrome", and we all know people who claim to "hate hospitals". These people never get diagnosed, their conditions go undetected, and they fade away and die quietly at home, or they get discovered and diagnosed when it's too late to save their lives. Needle Phobia is thought to be one of the major causes of premature death, but these people's medical histories are missing from the statistics, so nobody knows for certain how big the problem really is. 

What would help

I know exactly what I need. I need a very heavy duty sedative that will render me virtually unconscious, the sort of thing that some dentists use for nervous patients. My son, Toby, is severely learning disabled, and in the past I've been with him when he's had drugs like Midazelam or Rohypnol to knock him out during difficult and traumatic medical procedures. They've worked a treat, and I know that's exactly what would make it all doable for me. Yet the doctors don't agree. They can't see why I could possibly need something so strong for what they consider an extremely minor medical procedure. I wish I didn't need it but I do, and they can't believe that I'm really that pathetic. I've offered to pay the private prescription charges for any such drug, but they just can't understand how anyone could possibly be that seriously affected by something so incredibly minor. 

Facts about needle-phobia

Yesterday I googled Needle-Phobia and this is what I learnt. 

• I'm not the only one - between 10-20% of people have varying degrees of needle-phobia. 

• Many needle-phobics are so frightened of needles that they make an active choice not to have medical treatment, or to go to the doctor with any symptoms. 

• This 20%  figure correlates with the percentage of the population who do not take part in medical screening programmes. For needle phobics turning up for a health screen might lead them needle-based procedures, so they simply don't go

• Even in life and death situations, many needle-phobics cannot overcome their fears to receive treatment. Many needle-phobics choose not to engage with medical interventions at all. Needle-phobics choose death instead of needles.

• For many needle-phobics, life-threatening medical conditions go undetected and therefor untreated because they cannot engage with doctors

• These people don't WANT to die. They just can't face needles so death can become inevitable

• It is also believed that needle-phobia is up there with the major causes of premature death. However, it's impossible to collect data on this hidden problem, because researchers can't count people who don't turn up

• There is very little written about needle-phobia. Most people who have it are too embarrassed to write about it, and most medical professionals don't take it seriously enough to write about it either. 

• This means that the blog post I wrote in 2012 is still one of a tiny handful written by patients  My Needle Phobic Past . 

• It's a neglected diagnosis, partly because health professionals can't really believe it exists, and partly because the people who have the worst cases of it steer clear from doctors and hospitals. 

• The initiative to put it on the map has to come from patients themselves, because there are certainly no plans by the medical profession to put it on the agenda. It's up to people like me to talk and write about it as much as we can. I've written a load about it already, and I've been a Keynote Speaker on the subject at Medical Conferences. I've come out of the closet, so to speak but many people find it really hard to own up to because, let's face it, it's extremely embarrassing to admit to having something that is regarded as being laughably childish and trivial. I promise you it isn't. 

What's next?

So where does all of this leave me? A lovely doctor rang me at home yesterday to talk about it. Unfortunately, I couldn't talk to her because I couldn't stop crying, so Malcolm took over the phone call. I've since been able to send her an email about how this whole thing affects me, and she will be talking to the team in the next few days. Meanwhile she has suggested that I have a CT scan instead, which means they can use the Portacath to inject the dye. Whether or not a CT scan is detailed enough to catch any advancing cancer cells in time is something I've asked about in my email. 

I had accepted that I was likely to die of cancer, but perhaps instead Needle-Phobia will be the true cause of my death. I understand why people choose not to be treated - the terror I feel is indescribable. The past few weeks there have been times when I've seriously considered walking away from treatment altogether. I've also had times when I've been convinced that I can feel the cancer growing - every ache and pain and the cancer paranoia takes over. For several days around Christmas I had this sense of certainty that I wouldn't be here to see next Christmas Day, and then I got a really nasty bug and I was too ill to even register that it was New Year, never mind party all night long.  That was a bit of a positive wake-up call. I now have to stay alive for at least the whole of 2015 because I can't possibly allow such a damp squib of a New Year to be my last one ever! 

It hasn't all been bad

So now it's time to find where that mojo of mine has been hiding and get it back up and running as quickly as I can. There have been some great things happening - last week I was on the radio twice which was mega-exciting. Radio Two on the Jeremy Vine show no less - and he is every bit as lovely in real life as I always hoped he was. I was also on the BBC World Service the evening before, both times talking about cancer and whether it's a good death or not. Generally speaking, that's not something I even think about, instead I focus on the good life I love, cancer or no cancer, but it was a very interesting debate, and hopefully nobody suspected that I was in the middle of a huge downer for me. 

Other good news is that Adam, my youngest, started his first grown-up job this week! I'm so proud of him I'm positively beaming. I've also been working on designing a range of Parent Workshops that will support and empower parents like me who have disabled children, based on the themes from my book "The Special Parent's Handbook". I was thrilled to be back on the Number One Bestseller slot on Christmas Day itself for my book category. A Christmas Number One, eh? Just like the Beatles! I'm also planning the next book - this time it will be about coping with cancer - and I'm hoping it will be every bit as uplifting and joyful as my first book seems to be. 

Online Community

One of the very nicest aspects of having written a book is the wonderful people I've been privileged to meet, both in real life and on line. On the Facebook Page I set up to support parents of disabled children, I'm the one being supported this week. I've had so many lovely messages of good will and friendship from some fabulous people there that at times it feels like I'm being carried along by an army of well-wishers. 

I was also honoured beyond measure to be invited to take part in Michelle Daly's Warrior Mums project as their special Christmas Feature. Michelle even had me going on a lovely nostalgia trip finding old childhood photos - now that's really a strange experience to see your 3 year old self looking straight at you from a computer screen. 

The other thing about this whole needle phobia stuff is that it's given me an excuse to come back and revisit this Blog, the one where the cancer writing happens. It's been a long six months or more and I've missed it - but I've had to concentrate on the other blog posts which are part of the official book website www.yvonnenewbold.com . 

Toby

Of course nothing is ever plain sailing - another difficult happening during that week before Christmas. Toby's care home have asked me to find somewhere else for him to live. Back to the drawing board, more trauma, more upset, and a huge responsibility to find exactly the right place where he can be happy and settled for a very long time. Poor Toby, he has absolutely no way of understanding any of it, and he's got to face another major upheaval. Right now, he needs me more than ever, on the ball and on the case to find the very best care home in the world for him.  I've got to find the motivation and a new perspective quickly, I've been floored for far too long, and maybe Toby will succeed where the doctors haven't managed to yet - he'll have me bouncing back in no time. 

Coke Floats & Chemo: Dancing not Drowning

Coke Floats & Chemo: Dancing not Drowning: Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writi...

Dancing not Drowning

Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writing a book if nobody reads it, not because it might be a rubbish book but because they never got to know about it at all. So it's the PR, the internet marketing, the social media presence that's where the real work happens, and there's no other option but to jump straight into the deep end and hope to goodness that you don't get drowned. 

It's fun though, but very full on. I did nearly drown for several days when I was trying to create a website from scratch. Trying to get Wordpress.org and the website hosting service to link up and make friends was far more than my little brain could cope with, and I was climbing walls in tearful frustration for days. Then I found the answer - they had sent me an email days beforehand which I had thought was spam because they unhelpfully didn't mention either of their organisations' names in the email title. With 21st century technology, it's always those tiny little things that just don't quite meet up that completely that do my head in. 

So, I've now got the beginnings of a website. Not the best one in the world, but I've never been prouder of anything because it really does represent blood, sweat, tears and goodness knows what else. It's also a "work-in-progress" - there is stacks of room for improvement, but if you'd like to see it before it becomes simply marvellous (ha ha ha) here's the link :The Special Parent's Handbook Website.

I've also set up a Facebook Page, again called The Special Parent's Handbook, and here's the link to the Facebook Page.

Then yesterday I did another You Tube video. Hilarious. Not. It took about 8 takes with WM creatively constructing another tripod from all sorts of things around the house. if you haven't seen the blog post about his previous attempt here is it: How Not to Film Videos .

It's worth a peep if only to see the photo of the bonkers tripod itself. We managed it in only 8 takes this time, mostly techno nonsense but Take Number 7 is a classic - just as I was saying goodbye after a word-perfect performance, the best one I'll probably ever manage, literally 2 seconds before the very end, Adam forgot we'd told him what we were doing and he barges in through the door only wearing pyjama bottoms and calling "Mum, where are you?" rather loudly. We have it on camera, including the bit with me failing to maintain my professional dignity and losing it completely.  WM and Francesca are threatening to post just those few seconds on Facebook. It really is very funny now, but I couldn't find a funny side at the time. 

In the video I read a bit of the book, an extract which looks at how frustrating it can be when you are a medically-savvy parent of a complex needs child during the Doctor's Round on a hospital, when it's sometimes hard to have your concerns taken seriously and listened to properly. 

Me reading from The Special Parent's Handbook

The best bit of the whole new world of publicising the book is the amount of goodwill and friendship there is online. People I've never met are banging the drum for me, holding my hand through all the stuff I'm such a novice about, and the warmth and enthusiasm for the project is simply astounding. 

I can barely bring myself to watch the video, I just cringe at both the way I look and sound, but then one completely lovely "virtual friend" sent me this tweet last night which I absolutely love to bits! 

@SpParentsHbook definitely cute.. and cuddly.. I wanted to get a hug from you :-) You looked like just the mum everyone would want to have x

— Marie Ennis-O'Connor (@JBBC) May 5, 2014

There's still so much to do, and I've barely started the whole publicity and internet marketing stuff yet, and already the book is making loads of pre-order sales on Amazon. They stock 20 million books, and even though my book isn't actually being launched until the 2nd June, pre-orders are selling so well that it's spent a lot of time in the top 10,000 most popular books, and it even got to rank at being the 2,740th most popular book on the whole of Amazon for a few hours the other day! OK so it's not in the top ten yet, but I was still leaping up and down with excitement. Today, I even got an email from Amazon to order a consignment of books from me, and I wanted to spend the whole morning singing and dancing about it.   

It's also lovely to have an Amazon page and an Author's page - I can't quite believe how much fun this can be sometimes! If you want to have a look, here's the link: The Special Parent's Handbook Amazon Page.

Oooh, I've just realised that the past few days of tearing my hair out over websites and technology must have paid off - I've never before had so many links, a You Tube video AND an embedded tweet in a blog post before. Best of all, I haven't mentioned cancer once, even though it's the horrid PET scan day tomorrow.  I'd better go off and dance around my kitchen again in celebration! 

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.

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.

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!