I have a story, it’s nothing unusual. It’s about a teenager who found she couldn’t stand up straight. Worried parent’s told her to stand up straight, female family members worriedly whispered as she bent over the bathroom sink to brush her teeth on Saturday morning, no one had any idea why the girl lent to one side when she stood up. Finally dressed in their Sunday best, the girl’s parents took her to the well-respected local doctor at the bottom of her auntie’s road.
The story then start’s to get a little odd. The local GP consulting lot’s of encyclopaedia’s made the girl bend over, Idiopathic Scoliosis was the cause of the deformity. And a double curvature of the spine meant corrective surgery was needed immediately. The girl was whisked out of school and firmly ensconced in Stanmore Orthopaedic, the hub of bone disease research in the UK with it’s marvellous nursing staff.
The girl got to meet other kid’s at the hospital, children suffering, and yes they were, with bone cancer, other kids with scoliosis, children suffering from muscular dystrophy unable to move, wasting as they lay in their hospital bed’s. Then there were the kids that came in for their chemo treatment. One girl, Helen, would spend the night with her curtain’s drawn being physically sick even before she had the treatment because she feared it so much. Then there were the kid’s who were really to young to understand what was happening and of course the parent’s who had lost children that would turn up to talk to the kid’s, nurse’s and consultant’s they had got to know.
The girl and the group she had befriended (The Scoli-ites) had their full spinal surgery, with rib clippings, bone grafting and metal rod’s. Some found they could walk afterwards, some weren’t so lucky. They were all stuck on morphine and then all very angrily weaned off of it via strong sleeping pills and tranquilizer’s. All of which were needed for the chronic pain and to avoid going into shock after surgery.
The girl in the story is me and I haven’t spoken about my surgery or my condition in year’s. I am a stubborn, determined person who was shaped by this experience. And these serious surgeries do affect and shape the person you become. It made me realise two thing’s… there are always, ALWAY’S people far worse than you and ALL situations get better over time. What it also made me realise is how traumatising major surgery is and how disassociated you become from the real world when stuck in hospital for long length’s of time. And even more so when you get home to find you are now lagging behind in the correct time-line of life whilst battling with chronic pain.
For all the consultation’s and quite frankly excellent nursing care we received not once was I or any other of the kid’s offered counselling or psychological consultations. This was left to the already overburdened nurse’s who also acted as security guards and mum’s and dad’s at night.
How many people have you read about in my story so far, do you feel really should have been complementing their treatment with counselling. Was it the parent’s who turned up at their dead child’s old ward because they couldn’t bear to sit in their house without them. Was it the parent’s watching their dying children toddling around the ward. Was it the child who felt so stigmatised by her condition she refused all other help and preferred to spend the evening being physically ill before a chemo session. Was it the kid’s going cold turkey with very strong opioids’. Was it the absolute trooper Katherine who lay in bed with muscular dystrophy making joke’s all day long aware that she did not have much longer to go. The children watching friends bed’s empty. Or maybe the staff themselve’s who had the charge of dying and seriously ill children day and day out.
I would have to say all of them and also all of those who go through intrusive, life threatening surgery and have to return home and catch up with life or simply start living it at their own pace. It’s now 25 years on and I don’t really see alot in the healthcare press pushing or even reporting on psychology being used to complement treatments.
The American Heart Association released data on a collaborative medical and psychiatric program on the 8th of March 2011. The AHA had found high levels of depression in cardiac patients receiving medical aftercare and have now introduced counselling which has increased patients quality of life after elective surgery and therefore affected recovery rates. This was also found to be true in a palliative care study held in four New York hospitals with advanced cancer patients. The palliative care study was first carried out in 2010 with terminally ill cancer patients. The study not only showed a monetary saving to the hospitals overall but also a prolonged period of life for dying patients.
The hospitals decided to extend the study to early stage cancer patients and patients suffering from heart failure, offering emotional support and two way conversations about treatment plans, what the patients should expect and what they wanted to do. The study found that if all four hospitals used a palliative care team for a year they would make a saving of up to $252 million.
I don’t find the fact frustrating that the study is having to use monetary terms to persuade the US Government to build more palliative and emotional support programmes for patients in treatment. I find it frustrating that it is now 25 years on from my original extensive surgery and thing’s are only just starting to change. Basically serious surgery is just that, it physically put’s a strain on the body because it is not a natural state. It is invasive, at some time’s frightening, and traumatising all at once . Surgery is something usually done out of necessity rather than choice.
So why don’t we give some of this choice back in treatment planning and emotional support for the act of surgery itself. We don’t question the need for physical recovery after surgery so why do we question the need for psychological recovery after we have been through such a life threatening, and draining experience?
Michelle is a health industry veteran who taught and worked in the field before training as a science journalist.
Featured by numerous prestigious brands and publishers, she specializes in clinical trial innovation--expertise she gained while working in multiple positions within the private sector, the NHS, and Oxford University.