A year ago I took my father to hospital for endoscopy. He had been diagnosed with anaemia over and above a chronic disease known as Churg Strauss Syndrome. He had been referred for endoscopy to check if he might be bleeding into his bowl even though he had no bowl symptoms.
My father stressed about the appointment. He worried about the special diet he had to follow in the days leading up, and also about caring for my mother (who has dementia) on the day of the procedure.
In the event, it all went well. I met him at the other end so to speak, and he was on good form. The doctor showed us a movie of his insides and told us that there was the odd polyp that he had removed and that were normal for his age and condition, but that there was no evidence of bleeding. This was all good news but left the question standing. What was the cause of the anaemia?
Months went by. My parents had other health difficulties. My mother fell in the street in May and broke her arm at the elbow. It was two weeks before the break was recognised and she was put into a cast. Living with someone with dementia is tough at the best of times, the sufferer needs to be fed, watered, washed, dressed, toileted, exercised and entertained. But when the person also has a fiberglass cast from their fingers to their shoulder, and the carer is in their late 70s, frail, anaemic and feeling at a low ebb, it all gets a whole lot worse.
Faith in the NHS
By September there had been no progress on the anaemia. My sister and I encouraged our father to put pressure on his GP and even suggested that he see private doctor. But with all his other difficulties and his utter faith in the health service, the situation remained stagnant.
Eventually it was revealed that his referral had been lost but that an appointment had now been made for the long awaited follow up. He was to have a second investigation this time in his upper alimentary canal even though there were still no symptoms. The proposal was to use one of the new “pill’ cameras. He was pretty excited about this and on a visit to the Wellcome Collection on 15 Sept we actually saw one and marvelled at it.
By now my father had a strange breathlessness and he was given iron intravenously and told it would take a couple of weeks before the effects would be felt. An appointment with a haemotologist was booked and a routine blood sample indicated possible myeloid dysplasia. He was then given his first blood transfusion and an appointment was booked for 8 October at the Macmillan Cancer Centre.
By mid September he was pretty unwell and was admitted to UCLH with pleurisy. He was given intravenous antibiotics and was discharged the following week.
On 21 September, despite his health, we had a family lunch in London. My father was definitely perkier and managed to upset my daughter who, in typical teen fashion, refused to rise to the challenges he set. On 26 September he called an ambulance and was admitted to the acute medical ward at UCLH.
Final email sent just as he was about to leave home for the last time.
From: “Gomperts, Bastien” <email@example.com>
Subject: Re: Bedales Reunion
Date: 26 September 2013 20:14:00 GMT+01:00
sadly noy. uch better though I think that the infection has probably cleared. But nou well. here commes the ambulance.
Give me ca call soon.
Beginning of the End
I visited my father in hospital on 27 Sept. We went for a walk on the neighbouring streets, he in his PJs. We looked at the sculpture in the Macmillan Cancer Centre and he fretted about the up coming appointment and what that might bring. The prospect of regular blood transfusions was on the horizon, and he knew that this would mark the beginning of his end, although neither of us thought this was imminent. A neighbor had survived several years on such a regime.
On 2 October my father was gasping for breath and early that morning was admitted to intensive care. The situation was desperate. He was sucking hard on an oxygen mask. Bursitis in his hips meant there was no comfortable position. His temperature was rocketing and he was sweating profusely. The decision was taken to put him on a ventilator. The life support machine was torturous. His blood was checked and it was immediately apparent that his profile of cells was far from normal. Over the following days, he was given one transfusion after another. By 11 October 2013 he was dead.
Three months on
Despite having completed the UK government tell us once form, that informs all departments of the death of a citizen, we have received a stream of post from the NHS regarding hospital appointments for my father since he died.
He had inappropriate investigations and waited too long for follow up. He can now be found 6 feet down in the chalk at the South Downs Natural Burial Ground. The NHS might as well direct their letters to him there. There is not much chance of this patient showing up!