Thursday, 31 October 2013

Coke Floats & Chemo: Nursing the NHS back to health

Coke Floats & Chemo: Is the NHS wearing the Emperor's New Clothes?: Twitter and Facebook have worked overtime since my previous post,   NHS Care for Disabled Children , and I've learnt so much more about ...

Nursing the NHS back to health

Twitter and Facebook have worked overtime since my previous post,  NHS Care for Disabled Children, and I've learnt so much more about what's wrong with everything, not just the NHS, but Public Sector working generally. So many people have joined the discussions, from all corners of the issue, and all passionately concerned about the current problems facing the NHS. Old, young, nurses, doctors, patients, parents of young children, chidren of older parents, it has been fascinating. If only we could find a way to harness all the good ideas, and pull together to make it work as brilliantly as it deserves to. 

It seems like the NHS is running on fear, from the very bottom to the very top, all the way to the Central Government, who are probably frightened too,  maybe of spending too much money on it, and of being voted out by the rest of us if they mess it up to much. Fear makes people close ranks, become defensive and terrified of being blamed for any error, no matter how small. Subsequently, mistakes get swept under carpets, and anyone, staff or patient or relative, that lifts that carpet up and points it out, is going to become massively unpopular among those who are frightened of the repercussions. 

So the best thing is to just pretend nothing wrong ever happens. Whitewash it away, don't listen, perpetuate the myth that everything is just fabulous. We've allowed the NHS to develop an "Emperor's New Clothes" syndrome. Every section of the NHS is so complaint-averse that unless we are all prepared to happily sing from the same songsheet that everything's rosy, we will be pushed out in the cold, ostracised, scapegoated and ignored. I know from bitter experience that this happens to patients and relatives, but until very recently, I had no idea it also applies to staff, even very senior staff. 

How does an organisation even begin to improve if it isn't prepared to look at itself with a critical eye, and encourage its staff to do the same in a "how can be do even better" kind of way? Where is the Customer Service approach? Most commercial organisations would encourage whistleblowers to expose colleagues who are working against the best interests of the organisation. 

Decent, hardworking, committed, caring healthcare professionals, the overwhelming majority of the NHS workforce, sometimes feel they are being effectively silenced and marginalised, and are struggling to be allowed to do their jobs to the best of their ability with integrity and professionalism. Thank goodness for them, it is because of them that most of the NHS delivers excellent, life-saving care in a way that makes us all proud and humbled. 

My own experience of cancer treatment over the past 18 months has been a really good example of this. Amazingly caring, committed staff all pulling together to ensure I consistently get the very best of treatment, delivered in a holistically caring manner, with nothing too much trouble along the way. I really couldn't ask for anymore, and had this been my only experience of the NHS at work, I would be blissfully ignorant of any problems, and protectively defensive about anyone who had the audacity to fault it in any way whatsoever.

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!

Wednesday, 16 October 2013

Coke Floats & Chemo: NHS care for disabled children

Coke Floats & Chemo: NHS care for disabled children: The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It ...

NHS care for disabled children

The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It feels churlishly unpatriotic to voice even the most gentle, whispered criticisms, and yet with it hurtling towards financial disaster, and brandished about as both a pawn and a weapon by politicians of all persuasions, constructive criticism right now is an absolute must. 

For the majority of the country, the NHS is there in the background as an insurance policy for when they or a loved one really needs it. Chances are that when they do, it will be short and sweet, and they will be left with an incredibly good impression of an amazing NHS who perform miracles with a ready smile and some comforting words. 

Yes, that version of the NHS does exist, it's alive and kicking and is a total joy to behold. I've seen it for myself time and again with my cancer care. However, for some of us, those of us who parent disabled children, there is often another very different version we also have to deal with, one that leaves us feeling isolated, alone, frightened, marginalised and very, very angry. 

When you are a competent, intelligent parent of a disabled child, over the years you organically become their expert. We can tell by a fleeting expression that a seizure may be imminent, or by the tone of a cough that a chest infection is on its way. We know how to keep our children calm, how a whole sentence can be conveyed in a slight movement of the head of a non-verbal child, and what to do to best encourage them to co-operate with a frightening hospital procedure. We have years of 24/7 on-the-job training and experience, yet we lack the certificate on the wall that we have earned over and over again. 

The very best NHS staff recognise this. They treat us with respect, they ask our opinions and they listen. These staff members are a joy to work with, and it is working "with", because they understand that working in partnership with committed parents will not only secure better outcomes for the children, but it will actually make their jobs a load easier too. Sadly, there aren't enough of these people to go around, which means that a lot of the time we have to deal with entirely preventable and particularly difficult situations. 

Some staff feel threatened by our knowledge and experience. Some seem too insecure to share the decision-making process with us. Some are just downright arrogant and appallingly bad-mannered. This is endemic right across the spectrum from the lowliest receptionist to the most high-and-mighty Consultant Specialist. It isn't everybody, and it's desperately sad that these people are being let down too by their less-than-professional colleagues,  but it's there, loud and clear, a sort of "institutionalised arrogance" that leaves us in absolutely no doubt as to who holds the power. 

These people know we are vulnerable, they know that we are struggling to cope with what is often the impossible, and most of all, they know that it's highly unlikely that we would ever complain. How can we? Our children's health, well-being and sometimes their very existence is completely dependent on the NHS. So we parents struggle on, stoically and silently, smiling through gritted teeth and putting up with the indefensible attitudes of many members of staff. It feels like a very invidious, but far too prevalent, form of bullying, by people who are paid by the taxpayer to deliver care and support to those who really need it, not to make their lives more difficult. 

What they don't know, though, is that we talk to each other. We share stories both of great practice and total incompetence, and most local parents get the measure of their local team pretty quickly. We are not alone, although in a clinic room it can often feel like it. 

A close friend, after a particularly difficult afternoon at a local hospital seeing a very well-respected Paediatrician, wrote this to me on Facebook. I quote with her permission. 

Yvonne, if you ever get a chance to tell  medical professionals what parents really want from them, here's my bit. 

1.    Don't be late for your first appointment.

2.    Introduce the other people in the room.
3.    Listen/look at the child 
4.    Listen/look at the parent.
5.    Have all the notes, in order.
6.    Read the up to date notes before we walk in so we don't have to explain      
the last 13 years every time.
7.    Develop some empathy and use it.
8.    Use your common sense.
9.    Stop ticking boxes, or at least make us feel like you're not ticking boxes.
10.  Announciate your words.
11.  Have some respect.
12.  Realise that no matter how bad the person sitting in front of you says it is, it's 10 times worse in real life.
13.  They probably don't get much sleep.
14.  The person sitting in front of you doesn't get a day off, a holiday and will never retire from the job they do.
15.   The person in front of you is not stupid or less important.
16.   Don't ignore non verbal children.
17.   Lose your ego.
18.   Parents all talk to each other.
19.   We don't like inconsistencies.
20.   Acknowledge my letter or e-mail.
21.   Get your head out of your backside or you'll miss something.
22.   Don't use my child as a guinea pig.
23.   Don't talk to us about the cost of a drug. Our child is priceless, so it's irrelevant

Soon other mothers chipped in too, with things like this: "If you call yourself an Autism Specialist, find out what autistic children actually can and can't do and don't then ask them to do the impossible." "Please don't ever again tell my six year old disabled child that he is naughty", "Don't tell me my Autistic child can't be autistic because he hasn't touched any of the walls yet", "Don't insinuate that I must be a bad parent". The debate went on for days.  Dozens of mothers, all intelligent, sensible and grounded, sharing their stories of how the NHS short-changes our children time and again, and how we smother our anger with graciousness to get the best we possibly can on behalf of our children. 

I am talking specifically from my own experience as a parent of a disabled child. I am sure it is also true of many other cohorts of patients, as evidenced from the number of recent NHS scandals about poor patient care. It feels like it's been a very long time since true patient care was at the core of the NHS values, although there are thousands of individuals working within the NHS who are doing their absolute best, in a working culture that doesn't always seem to actively support their best efforts. 

Has the NHS become too big a vehicle to be able to deliver compassionate care in every situation?  Has the University-led training of nurses promoted an academic framework at the expense of good old-fashioned basic care? Of course we want highly-trained, competent nurses, but kindness must remain at the core of everything they do.  

Are there too many people expecting far too much from an overstretched service, causing an unconscious resentment among some staff members? Do we as a nation love the NHS so much that we have put them on such a towering pedestal and given them so much glory that they can, in some thankfully extremely rare cases, literally get away with murder?

We have to ask ourselves some difficult and painful questions. We have to share experiences and ideas. We have to expect the very very best from our National Health Service. They are public servants. We are the public.  The dynamics need to shift towards a better quality of care for everybody, with a zero tolerance of poor care and unprofessional standards. Patients should be able to feel safe in complaining about poor service, without fear that there will be a closing of ranks and a universal hostility towards anyone who has dared to speak a less than popular truth. 

The politicians pontificate about the state of the NHS and what can be done, yet many of them have private medical insurance and little if any experience of service delivery at the coal face. Nobody ever asks us what could be done to improve things. Give me a bunch of 10 mothers of disabled children, and we'd give our best shot to have it working efficiently and effectively within days, with a complete change of culture among staff too. Lets face it, with the crises we face on a daily basis with our children, and the breadline poverty levels on which most of us survive, sorting out the NHS might be a piece of cake with icing on the top!

The bottom line is that care costs exactly the same, whether it's good care or bad care. In fact good care is more cost effective because fewer mistakes are made and it's more likely that the right decisions will be made from the very beginning. 

I always thought things couldn't get any worse when Toby was still under the Paediatric Team, being cared for by sometimes as many as 14 different Consultants, each only interested in a particular mechanical part of him. So much for holistic care. As he got older, it got better, and we were only seen by 8 regular Consultants. By then, I'd managed to cherry-pick the very best ones, and he had an excellent team. Toby's condition is so rare that he is the only known person in the world with it, which meant that we always saw the Consultants themselves, with each one wanting to see him at either 3, 6, or 12 month intervals. It was tough going sometimes, with an appointment at least once a week, but at least we knew nothing would ever be missed. 

Well, as he turned 18 last year, one by one, they each discharged him to the care of his GP. This was scary enough because our GPs just don't really know him; Toby saw Hospital Consultants so often that we've barely had to visit our GP at all throughout his childhood. Whenever Toby has been poorly, he has crashed so fast that he's had to go straight to hospital.  

Those frequent hospital visits are now handled by our GP Practice. That will work for acute health issues that present in a way that are obvious to others, but Toby needs more than that. He is non-verbal, he is severely intellectually impaired, and he has means by which to communicate on-going but invisible pain or any new symptoms he may have developed. More significantly, this reduction in the constant monitoring of his health will coincide with Toby leaving home and moving into a care facility. Even the very best carers won't have the experience or intuition to spot the nuances of any change in behaviour that I might notice, which could signal a health concern. 

What do we get instead? An annual event called a "Learning Disabled Person's Healthcare Check", an annual event. So the kid-glove monitoring he's always had by seeing a Hospital Consultant every week or so has now been reduced to once a year.  Last week I discovered that these annual checks aren't even handled by the GPs themselves. Not even by the Practice Nurse. No. A Healthcare Assistant, with no training and only a few months experience carried it out. The outcome? They have told Toby to eat healthily and take exercise. Great advice for a young person who is gastrostomy fed and whose mobility is so reduced that he is part-time wheelchair user. 

Words for once have failed me completely. 

So over to you, what do you think? What are your experiences of the NHS, good and bad? How can we work together to make the NHS something we should all be incredibly proud of once again? 

I love the NHS, I know that without it, neither Toby nor I would be alive today. I love it enough to want it to be the very best it can possibly be. 

A few months after I wrote this, I wrote a book called The Special Parent's Handbook, to try and make things easier for the next generation of families with disabled children. In it I've shared everything I've learnt in how to make things easier, particularly when working with the team of staff who support our children in education, health and social care. 

It is now also being widely read by those who work with our children, and I've had considerable positive feedback from these professional members of staff about the book, and how it's helped them to better understand the issues facing families like my own. 

The Special Parent's Handbook is available on order from any bookshop or from Amazon, and there's a Kindle version too. Here's the Amazon link if you'd like to buy it. 

I also have two Facebook Pages, both posting the very best information, support and news, one for those interested in issues concerning disability,

and one for those with an interest in cancer, 

It would be great to see you there! 

Monday, 7 October 2013

Coke Floats & Chemo: Acceptance with a Big Heart

Coke Floats & Chemo: Acceptance with a Big Heart: I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shock...

Acceptance with a Big Heart

I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shocks, and loads else. Where do I start? Health news, I suppose. Over the past few weeks I've heard the very best of possible outcomes prognosis-wise, followed moments later by the very worst of outcomes. To be honest I've spent a lot of the past few weeks reeling with shock and trying to get my head around very conflicting information. Yes, I've had moments when I've been lower than ever, then moments when I'm just totally resigned to whatever will happen, then moments of anger at myself about my resigned acceptance, because that just feels like giving up and pointing your toes in the air. Anyhow, it all seems to be OK now, and we're back to that old chestnut with cancer - I might die soon or I might not, but I'm hovering at a comfortable balance at the moment and nothing too dramatic is likely to happen this week or next. They call it stable, whatever that means.

Some cancers are fuelled, either totally or partially,  by a growth hormone called HER2, and about a decade ago a really exciting new drug was launched, Herceptin, which blocks this HER2 and so the cancer can't grow. My cancer was partially HER2 receptive, so yippee, I got it, the standard treatment of one year, every three weeks via a drip.

Then I got even better news. Remember the shock when they told me the cancer had spread to my spine and that meant that it was now incurable, and prognosis was very confusing? Well according to the latest PET scan results, something really absurd had happened - that little dot of spine cancer had actually got a tiny bit smaller!! Double yippee! The doctor explained that there seems to be a very small group of women who seem to react remarkably well to Herceptin, and they think that I'm one of this incredibly lucky group. There have been clinical trials offering certain groups of women Herceptin for longer than the year long treatment, and some are doing so well they've been on it for more than 5 years. They tentatively told me that they are considering leaving me on it for at least another year, and possibly just keeping it going until it doesn't seem to be working any more. However. There is always a "but", and in my case it turned out to be an enormous one.

Herceptin blocks HER2 which is great news as far as cancer goes, except your heart also has HER2 receptors, and stopping the HER2
 working properly in your heart can cause pretty serious heart damage. I have a heart scan every 3 months to make sure everything is still looking good, and this time it wasn't.

So with barely time to draw breath, never mind cartwheel across the consulting room, the lovely doctor had to explain all that too. Talk about giving you something with the left hand and taking it away with the right. If my heart is damaged, it means absolutely no more Herceptin, which almost certainly means premature death.

It was six whole weeks of wait and wonder before I was booked into a full day of horrid heart tests at a specialist unit. During this time, they decided I could have one dose of Herceptin, and something really odd happened - just as it started I had a funny turn, and doctors got called, and everything got stopped. My blood pressure was through the roof at 190 over 120, and nothing was looking very good at all. So on top of everything else, they have now put me on beta blockers too.

Anyhow, the heart test day was not a good one, lots of needles, lots of horridness, but it was all so worth it in the end. My heart is OK. In fact not just OK, pretty flaming marvellous by the way they were talking. Apparently it's a little bit enlarged which they don't seem to be worried about, but then it's surely much better to have a big heart than a big head. Hope to goodness I don't have both.

There has been a stack of other stuff going on too, stressful stuff, funny stuff, sad stuff, happy stuff, but telling all of it would run to a War and Peace length of prose. The kids are all moving on and growing up, far faster than I ever thought would happen, but this is bringing the odd moment of sheer terror too, and it does seem like we are lurching frotvm crisis to crisis almost on a daily basis. I really wish I was the type of person that loses weight with worry - if there was any fairness in the world I've had enough worry of late to be a perfect size 6.

One of the things that has happened is that my eldest beautiful, clever, talented, witty, kind caring daughter has taken herself to Italy all by herself for a few months. It happened suddenly, one Friday evening, when she bounded downstairs, leapt onto the sofa and told me she had found herself a new job. To start in a few days. On a beach in Sicily, keeping 5 small children safe on their holiday. Francesca hates beaches, the heat and being in the water. Or at least she always has up until then. Off she went, and I was a total amalgam of fear, pride, pleasure and more fear. Oh and I blubbed for England as her plane flew away. Adam was lovely - he took me in his arms and said "Don't worry Mum, she'll be back home again soon". "Not if she falls in love with an Italian, marries him and has his babies" I wailed. He laughed. "Mum, this is Francesca we're talking about. Who on earth would want to marry her?". Little brothers, eh?! But it did make me laugh.

So that's why, last week, WM and I flew off to Rome for 3 days. She has totally fallen in love with Italy, and is now doing an intensive language course just off Piazza Navona. My baby girl, I just had to be with her for her 21st birthday on Wednesday.

Fabulous time, fabulous food, and so brilliant to see her and spend loads of time catching up on all the gossip, news, events and just putting the world to right together. It was also really special to spend proper stop-still-and-stare time with WM, who has just been totally rock-solid in his love and support through every moment, good and bad, since this whole cancer chapter began.   We stayed at a Hotel overlooking the Trevi Fountain. The views at breakfast were just beyond amazing. Odd though, because although no one knew I had cancer which was fairly liberating, I just felt so old, and tired, and weak for so much of the time, and the walking was so painfully hard, particularly on the cobblestones, that I felt the cancer was there pointing it's finger and laughing at me the whole time. I was last in Rome only 4 years ago, but I felt 200 years older, and I just couldn't do what was effortless before. It's been a bit of a wake-up call. a realisation that this is how it will always be now. More taking on board, assimilating and accepting, but it will be OK. There was a definite upside, though. For the first time in my life, I wasn't a gibbering wreck as the plane took off. It's this whole acceptance malarkey again, whatever will be will be, and potential plane crashes just don't seem nearly as scary anymore.

Next time I write, I'll post some lovely photos of Rome, but before the family starve to death,  I'm now off to create yet another new dinner with an Italian twist - Shepherd's Bolognaise.