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,

 The Special Parent's Handbook Facebook Page

and one for those with an interest in cancer, 

Coke Floats and Chemo Facebook Page

It would be great to see you there!