I am a patient advocate, activist, medical writer and author, and have worked alongside patient-centred health professionals to improve services at local and national level. My book, ‘Nothing Personal, disturbing undercurrents in cancer care’, was a winner in the Medical Journalists’ Association Open Book Awards 2009.
Health Care Trust– an oxymoron?
In the mid 1980s I was told the pain of defecation was ‘nothing to worry about’, ‘a ‘small haemorrhoid’, I should ‘eat bran’. Pain subsided, but returned and by December 1989 was unbearable. The diagnosis was ‘carcinoma of the anal canal’- a 4cm tumour which had spread. The twelve week treatment had to be ‘fairly aggressive if she is to have a chance’: simultaneous chemotherapy and radiotherapy, radiotherapy alone, plus implanted radioactive wires (brachytherapy). Side effects were ‘nausea, tiredness, diarrhoea and wind’. Nobody mentioned pain.
Treatment began on 6th March 1990. Staff seemed kind, but questions met with questions, tailored truth, conflicting information and outright lies. With nothing to rely on, I began writing everything down to clarify my situation.
Radiotherapy caused violent diarrhoea. Muscle spasm and wind pulled the tumour in different directions. Passing faeces felt like passing shards of glass. But failure to acknowledge treatment harms resulted in unmet needs. By the end of the second week the pain of defecation was so terrible I was biting a toilet roll to muffle the groans. CoProxamol was ineffective. I asked for better pain relief but was told there was nothing else I could have. On the loo, I began banging my head on the wall.
The same words, ‘Turn over and we’ll just take a look’, preceded each weekly visual examination of my bottom. After a month, swollen and raw inside and out, the same words deceived me into position for a full rectal examination, carried out despite resistance. A nurse and another doctor did nothing to protect me. I felt distraught, worthless, set up and set upon. My mind could not accept that my protectors could do this to me. Trust died.
I suffered continual playback and nightmares. The letter to my GP said, ‘It was impossible to tell if the treatment is having any effect, because the examination was so difficult’. I learned later I had been treated according to the protocol of a clinical trial which allowed a 6-8 week break before examination and assessment to allow the area to heal.
A two-week gap between treatments followed. They said I would be ‘a bit ill’. Deterioration was rapid. I could not lift a glass of water. Off-the-scale pain escalated daily. I identified with torture victims and suffered in anticipation. I felt abandoned and suicidal. My GP did not visit for a week.
Two weeks’ radiotherapy to the groin followed. In May, after another 2 week break, I was admitted for brachytherapy: 6 wires, up to 6cm long, involving three quarters of the circumference of the anal canal, were threaded through the muscle under general anaesthetic and left in place for 60 hours. After the insertion, I woke to find an unsupervised visiting doctor (one of 4 briefly introduced as having ‘come to see you’ but who had come to learn the technique) trying unsuccessfully to connect the wires to the radioactive source. As the implanted muscle went repeatedly into spasm he ignored my primal groans. The nurse said, ‘We’ll give you a pain-killing injection – when we’re through.’ According to a later report, the protracted procedure lasted 11/2-2 hours.
ischarged home, the ‘play-back’ became two-pronged. Incredibly, the pain of defecation reached new heights. I could not bear to hear the word ‘pain’. MST was ineffective. Eventually, Palfium 5mg (dextromoramide) brought short-term relief – as long as I got the timing right.
I had been too traumatised to speak out about unacceptable practices as they happened. Staff silence normalised situations, creating barriers to raising concerns. After two years I met with the oncologist and pleaded with him to ensure such things could not happen to other patients. He said, ‘You can’t expect to come here and tell me what to do’.
Indebted for my life, yet suffering years of conflict and playback, I was unable to speak about events without crying. I was also dealing with divorce. So it was 4 years before I wrote to the oncologist asking if these things were still happening. My concerns were ignored.
I wrote to the hospital and a Nurse Manager visited my home (a 90 mile round trip). She asked if I wanted to make a formal complaint. I declined. I simply wanted to ensure future patients would not suffer as I had. Another manager said they would try to effect change ‘the nice way’. But a year later they wrote, ‘informed consent is still a difficult issue’. I requested the implant doctor’s name. The hospital said it was ‘illegible’. I requested the other three doctors’ names. They claimed their computer system had changed – such information was inaccessible. I wrote again and visited the manager. When I pleaded for change regarding the rectal examination, she looked away, commenting, “That is the oncologist’s preferred way of working”.
I contacted other doctors to identify usual practice. Two mentioned the need for adequate pain relief with regard to implants; one stated, ‘if (a rectal) examination were necessary at that time, the only recourse would be general anaesthetic’.
Desperate to raise awareness, I wrote to the British Medical Association and the General Medical Council, but they were not helpful. I learned of the Declaration of Patients’ Rights in Europe 1994 and wrote to the World Health Organisation. They replied, “It is exactly because of the kind of experiences that you are describing in your letter why WHO has taken the initiative to promote the adoption of patients’ rights legislation…” I wrote articles in the Health Service Journal (1996) and the British Medical Journal (1998).
Meanwhile, my last letter to the hospital had initiated a formal complaint. Repeated indecision about whether to use old, or new, complaints processes caused great delays. Making a complaint became almost as damaging as the experiences themselves.
In March 1997, two doctors held an Independent Professional Review at NHS Trust Headquarters. Hope crumpled when one said he knew the pain of muscle spasm could be bad – as he had experienced it while out running. But he did not have wires threaded through his muscles! After perfunctory questioning, they referred to my concern about consenting to treatment by telephone and thrust a paper at me asking, ‘Is that your signature?’ This had been missing from ‘full’ copies of my medical notes sent prior to the Review. It seemed I had later signed a consent form for brachytherapy.
This memory lapse seemed to signal dismissal of my ‘evidence’. I protested I had written down details of traumatic events as they happened. They asked if I would mind if the lunch hour was shortened, to enable them to catch an earlier train.
Their undated report, received months later, contained several inaccuracies including treatment to ‘right’, instead of ‘left’, inguinal nodes. It praised the oncologist’s achievements, minimised the rectal examination as a communication issue, stated ‘there was no protestation made’ and dismissed my version of events as unreliable due to poor memory and time span between treatment and Review. I received an unwanted, meaningless corporate apology from the hospital trust with regard to pain suffered during the implant connection.
Treatments had spanned 3 months; pain and ‘playback’ lasted many years. The psychological damage is life-long.
Mitzi Blennerhassett 18 May 2011