Thursday, 23 January 2014

Care and Compassion

It's been a great day today, I finally finished "The Special Parent's Handbook" at about 3am on Sunday morning, and then I emailed it to eight very special people for feedback, people whose judgments I really value. Three of them are special mummies, all with their own children facing disabilities, one is a very dear friend I met over 16 years ago, when Toby was in the next Intensive Care bed to her son at Guy's hospital. For several long, difficult months we also lived in the same Ronald McDonald House just around the corner from Guys, along with 6 other long-stay families, all of us coping with the worst times parents can cope with. Whereas my Toby eventually recovered and came home, her son wasn't so lucky, and he didn't make it. I think of him every single day, and count my blessings. 

In the book, I've included a chapter on coping with your child being so desperately poorly that they are ventilated and in ITU, and it felt the right thing to do to also cover what happens if your child dies. It was a heart-wrenching chapter to write, and I felt a bit of a fraud because, although it nearly happened to Toby countless times, I was one of the lucky ones. I needed to be sure that I had hit the right tone in terms of sensitivity, so there was only one person I trusted to be judge and jury on that one. This lovely friend agreed to read it and promised to be brutally honest. Well, it means the world to me that she feels it absolutely hits the right note. 

The other people who are reading it are - a really supportive GP, a retired Social Worker who has known our family for nearly 18 years, and my ex-next door neighbour who is also a teacher. Then there is the Publishing guy himself, whose feedback has had me dancing around the kitchen nearly all evening. He was so generous in his compliments and started his long feedback comments with the phrase "Absolutely fantastic and a very inspiring read". Well, you can't do much better than that, now, can you?! 

It's also beginning to get a little bit exciting now. On Sunday, we had Rachel Raphael, a very talented photograper, over to our house for the whole afternoon to take some shots of us for book publicity purposes. It started as nerve-wracking, but by the end of the session I was just beginning to feel like a film-star. Apart from having the perfect face for radio, that is, of course. 

It will be a couple of weeks before we can see everything that Rachel captured, but she has very kindly already let me see a couple of the shots ahead of time, and I'd love to know what you think. I think black and white makes everyone seem just that little bit more classy, don't you think?! 

It's interesting how many very difficult emotions have been brought back up to the surface whilst writing the book, things I thought I'd dealt with many moons ago. Some of it has made me very sad at times, other bits have made me so angry at the way the very people who are paid to support families like mine have let us down time and time again, making what was already an intolerable situation unbearably worse. It really hasn't been easy to write at all, but it's probably done me the power of good to be able to take out all the memories, good ones and bad ones, and look at them again from the distance of time, and put them to bed in a more peaceful way, perhaps. 

In writing the book, I also had to do a fair bit of research, and I wanted to read other books on similar topics. Apart from anything else, having books to read gave me an excellent distraction at times from the task in hand of getting my book finished, holy moley, any excuse! It was a brilliant excuse really, a completely guilt-free one, because it was "research" rather than "procrastination"! 

So I bought 5 or 6 books covering similar, but not identical issues, and surrounded my laptop with them on the dining room table. If you ever came to my house you would wonder how I ever got anything written at all with the constant comings and goings, dramas, crises, interruptions and Toby's screamingly loud Barney the Purple Dinosaur videos inches away from my ears. That's not to mention the constant stream of family and friends and Uncle Tom Cobbley and all that pop in to help or for a chat or a cuppa. Piccadilly Circus is an oasis of calm compared to my dining room. 

There was one book that kept disappearing. I found it on the sofa, in the other room, on the stairs, even in the loo once, in our kitchen .... people just kept picking it up and wandering off to devour it's contents. I now have a long list of people who want to borrow it, and most of them have now gone off and bought their own copies because they are impatient to read it and finish it. 

Eventually, it stayed still long enough for me to get hold of it and read it too. That was a mistake.... because I couldn't put it down, and I finally finished it in one sitting at 5am in the morning. 

It's called "Beyond My Control" by Suzan Collins. It is a truly harrowing read, but also essential reading for anyone, like most of us, who may at one time or another, have someone we care about dependent on hospital inpatient care. 

It details the story of Suzan's mother, an elderly lady with a physical disability but who was mentally still as sharp as a pin, and how a catalogue of appalling neglect, incompetence, apathy, poor nursing practice, cover-ups and error after error caused her completely unnecessary death following months of equally unnecessary agonising pain, misery and a total loss of dignity. It shines a spotlight on what is actually happening in many of our hospitals, how management has lost it's way, how it's all about shifting blame or covering up rather than taking responsibility to ensure it doesn't happen again, and how ward staff often can't see what is so blindingly obviously neglect that they are inadvertently delivering instead of care. 

The most shocking aspect of all of this is that Suzan herself has worked in the Care Sector at a very senior level for over 30 years. This is a daughter who understands the system, who knows what constitutes basic standards of care, and who is intelligent and articulate and still, despite all of this, she was powerless. Suzan did everything she possibly could to help her mother access the level of care and concern that she both needed and deserved, and yet it got them nowhere, such is the size of the machine that the NHS has become. It begs the question, if Suzan couldn't right the wrongs, what hope have the rest of us got when it's our own vulnerable relatives in hospital? 

Well, the book addresses this aspect too. Suzan has included advice and information about how to make the system work better for all of us to learn from. This is an essential book to read, and one that is best read when everyone in your family is well and healthy, please don't wait until there is someone you care about already in hospital and falling through the cracks where the care should be. 

Reading the book certainly got me thinking about the whole issue of care, compassion and how they are so often missing from everyday life on a hospital ward. Sadly, the nursing staff almost universally entered their profession because they cared so passionately about helping people, and lightening the load of the sick, the injured, those in pain and their families. On many wards up and down the country there are still huge numbers of caring, hard-working committed teams of nurses who strive to attain these ideals. What is hard to understand is that so many of these teams are working within an NHS culture that isn't supporting them in their efforts to care compassionately about their patients. In some areas of the NHS, nurses are finding it just impossible to care properly because the culture is blocking their best efforts.  It's not the fault of the individual nurse, it's the fault of the system, which seems to have sometimes lost sight of what the priorities should be.

I know from my own experience with Toby having been in hospital countless times, how a good nurse can make all the difference. A smile, a pro-active approach to pain management, a comforting word here and there, the time to stop and talk and make you feel like you matter - these are all things that reduce fear and engender trust and confidence, and once that happens patients are happier, and happier people actually get better quicker because their immune systems are stronger. It's a no-brainer, really, but somehow the system often makes it impossible for even the best nurses to do these things that they can do so well, and that simply is unacceptable.

Until the priorities change and nursing staff are allowed to care for our families and friends in the way they want to, and have the time to notice when things are amiss, and their management adopts a more open approach to admitting failures and mistakes and working hard to putting them right rather than compounding them by pretending they never happened, it's up to us to ensure the on-going safety of our hospitalised family and friends. We all need to be aware of what may go wrong and what steps we can take to put them right. Suzan Collin's book, "Beyond My Control" may make you weep buckets as you read it, but it may also give you the skills you'll need to advocate effectively on behalf of a loved one. Let's just hope what happened to Suzan's mother never ever happens again, and that things can and will significantly improve for everyone, patients and nurses alike.

Just to finish, I've done a little YouTube video about this blog post too. I hope it's OK, I'm just too embarrassed to watch it the whole way through! Please let me know what you really think, as long as you can stop laughing long enough!! 


  1. A book I now need to read while waiting for yours my friend. It sounds like it would fit in with the views of care I see and don't see when I visit my dear clients who have hospitalized.As you know I am a home support worker for the elderly. It makes my blood boil . Great blog as usual
    love Debbie xxx

    1. It makes a lot of people's blood boil, Debbie, yet it seems such a simple thing to actually treat people with respect, dignity, understanding and compassion, but the NHS sometimes makes it so complex and difficult for the ward staff to see the wood from the trees. It happens too much but there are still excellent individual nurses and very good teams pulling together for the good of the patient in lots of places. Hope things are good with you and thank you for leaving a comment. xxx

  2. Congratulations on finishing the book - I have no doubt it will be an essential guide to navigating the waters of parenting a special child.

    1. Many thanks Marie, it's certainly a great feeling to have got to the end. The book is full of things I learnt, things I did wrong as well as the things I got right, so it would be lovely if others can benefit from reading it. Hope you're having a good week too xx