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Poor sickle cell treatment in Britain causing patient deaths
Thu 19 June 2008





An official report on the treatment of Sickle cell sufferers published by Neville Clare PhD, chair of the campaign group Sickle Watch has revealed Africans in Britain are subjected to poor treatment, overdosing with opioids all leading to avoidable deaths

A review of deaths nationally from sickle cell disorder and thalassaemia over two years has produced devastating findings:

- In nearly half of the cases examined, “the actual cause of death was debatable or unknown”.

- “Patients who were acutely ill were not offered support from sufficiently experienced medical staff”.

- “There is a need to monitor patients on opioids more carefully.”

- “Simple measures might well have avoided some of these deaths”.

The report describes the findings as “a wake-up call”. It recommends better ongoing care of all patients, and better management of those in acute pain. This should include monitoring of fluid intake, regular clinical review by a higher level of specialist expertise, and much better nursing observations including respiratory levels. When death does occur, the review found that the quality of autopsies was poor.

Many key comments relate to the use of high doses of opioids – morphine, and diamorphine. “A recurring theme . . . was the excessive doses of opioid analgesics in patients with painful crises. There appeared to be a lack of understanding of the adverse effects of these drugs by doctors and nurses. In addition, assessment of pain, sedation and respiratory rate was infrequently performed.” The report concluded that in nine out of 35 cases of deaths in hospital, excessive doses of opioids had been given. In five cases patients suffered complications as a result “which contributed to the ultimate death of these patients.”

Dr Felix Konotey-Ahulu, clinician and well known expert on sickle cell worldwide, on reading the report commented: “One question that naturally arises is: so what kind of supervision led to this? . .. If the patient dies, sickle cell crisis and chest syndrome will be recorded on the death certificate. No mention is made of the fact that the night nurse on duty was an agency nurse who had not observed until the morning that the patient was hardly breathing from the opiates.” He also pointed out that in his own experience as director of the second largest sickle cell clinic in the world, in Ghana, and in the experience of another known expert Professor Graham Serjeant in Jamaica, treatment with morphia and its derivatives is never deemed necessary. They concentrate on managing the patient, helping them to stay out of hospital as much as possible by avoiding known risk factors, and treating painful crises with established protocols such as fluid intake.






Patient fears drug will kill them - proven

Neville Clare PhD, who is chair of the campaign group Sickle Watch and has campaigned on behalf of sickle cell patients in Britain for over thirty years, says: “For years we have been saying diamorphine – which is heroin – is much more dangerous than the British medical establishment makes out. Here is the confirmation.

“It is not just Ghana and Jamaica, with all their experience of sickle cell, that do not use this drug. In the United States it is never used clinically.” He gives an explanation of the background to the current problems. “In Britain it is a different story. Back in the nineties one patient died from an excessive dose of the previous drug. Suddenly patients here were told they had to change over to diamorphine – no choice. Some of them said they did not want this drug, they did not like what it did to them, they feared it would kill them or they might develop drug dependency or be stigmatised as addicts whether they were or not. The patients were not listened to, they were told it was safe – basically the doctors thought diamorphine was an easy option for themselves. They have believed it is okay for junior nursing staff to give this drug and then ignore the patients, or at least not supervise them closely enough.

“Now everything the patients feared would happen is happening. They are still offered nothing but diamorphine when they are in crisis. Many staff think sickle cell patients are addicts and behave towards them accordingly. And the NHS is giving patients this drug, on the wards, and patients are dying because their breathing gets worse and worse and nobody notices. It is a tragedy and a scandal.”

An article about the report featured in a recent issue of the British Medical Journal, written by Susan Mayor. It quoted David Mason, consultant anaesthetist at the John Radcliffe Hospital, Oxford, and co-author of the enquiry report: “The results highlighted that haemoglobinopathies are complex and complicated diseases. We found a surprisingly high number of cases where we did not know the actual cause of death.” Noting that sickle cell disorder affects every organ of the body, he added, “We need much better information on these patients and their management in order to improve their care.”

The report, A Sickle Crisis? by the National Confidential Enquiry into Patient Outcome and Death, is available at www.ncepod.org.uk.

Correspondence on the issues, on the BMJ website, can be consulted at http://www.bmj.com/cgi/eletters/336/7654/1152-a







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