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Sickle cell disease patients should beware of heroin pumps.

A new report published by the UK's National Confidential Enquiry into Patient outcome and Death (NCEPOD) has raised concerns about the use of morphine and its derivatives in the care of sickle cell disease patients. The report's conclusions support a long-standing campaign by some African and other doctors who have for years preached against the use of heroin pumps in sickle cell treatment. Tom Mbakwe reports.

This summer, Britain will launch a new code for the clinical care of Sickle Cell Disease in the country. Called the "Standards for Clinical Care of Adults with Sickle Cell Disease in the UK", it is expected to "improve the lives of thousands of sickle cell patients, their families and carers; and support the drive to reduce health inequalities faced by black and ethnic minorities in the UK". According to Norman Lamb, the Liberal Democrat shadow health secretary and an enthusiastic supporter of the new code, "the UK is leading the way globally by producing the first known standards for the treatment and care of adults with sickle cell disease. The production of these standards has involved the hard work of many dedicated professionals collaborating with patients over several years."

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On 9 July, Norman Lamb will host an event in Parliament with the (UK) Sickle Cell Society to celebrate the launch of the new code. In fact, the new code could not have come at a better time. In May this year, a damning 84-page report published by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) condemned the care of sickle cell patients in the UK, stressing that "many patients [do] not receive care based on best practice".

The report, the first national survey of deaths caused by sickle cell disease, covered all hospitals and primary care trusts in the UK. It included case notes for patients who had died from sickle cell disease over a two-year period (1 January 2005-31 December 2006). And the verdict was unflattering--81 deaths had occurred during the period, and two-thirds had occurred in hospital. NCEPOD asked expert reviewers to assess the care of 55 patients then in hospital, and the final episode of care of 41 patients for whom full notes were provided. They concluded that "many patients did not receive care based on best practice". For example, "9 of 19 patients with sickle cell disease who had pain on admission and who then died had been given excessive doses of opiods," the report said.

Sickle Cell disease affects mainly people of African/black, Mediterranean and Asian origin. The report, therefore, alarmed Prof Felix Konotey-Ahulu, a UK-domiciled consultant physician of Ghanaian origin who once ran the largest sickle cell disease clinic in the world based in Ghana.

Contacting Prof Konotey-Ahulu about his comments online in the British Medical Journal (BMJ), he told New African that he had written to Prime Minister Gordon Brown drawing his attention to the NCEPOD report, and pointing out that the serious findings of NCEPOD had been what he and others had been saying for "years, nay decades".

A highly rated African doctor in the UK, with regular overseas commitments, Prof Konotey-Ahulu asked the prime minister to take a look at what he and Prof Graham Serjeant, a white doctor who was the former director of the second largest sickle cell disease clinic in the world based in Jamaica, had said over the years about the established practice in Britain where morphine or "heroin pumps" are routinely administered to sickle cell disease patients despite their "lethal consequences" as NCEPOD had just revealed. Neither Prof Konotey-Ahulu nor Prof Serjeant use the term "sickle cell disorder" because they say "it is confusing".

Dr Konotey-Ahulu wondered why leading lights in the British media did not give the NCEPOD report the high profile coverage it deserved. Apart from the British Medical Journal (BMJ) which did a piece on 24 May (and encouraged an online debate on its website), this "extremely serious" report has been roundly ignored by the British media.

Dr Konotey-Ahulu, who is Kwegyir Aggrey Distinguished Professor of Human Genetics at the University of Cape Coast, Ghana, says in the BMJ article that his task of genetic counselling in Harley Street (London) is made easier by saying to parents and would-be parents, think twice before you increase the burden of sickle cell disease in the next generation, lest your children end up on morphine and diamorphine pumps.

He says his aim and that of Prof Graham Serjeant in the management of these patients is to ensure that they are well enough to make use of some of the excellent genes that their parents have given them, so they can become achievers in life. Introducing them to morphine and heroin is not the way to bring out the best in them.

"My greatest qualification enabling me to give advice to sickle cell disease patients, their families and carers," Dr Konotey-Ahulu says, "is not primarily because I am a beneficiary of an excellent mid-20th century British undergraduate and post-graduate medical education, but because I come from a sickle cell disease family. My trait parents had 11 children, three of whom suffered from sickle cell disease. I knew the tell-tale physical signs and symptoms before I went to medical school.

"My elder brother, Agbertey, died in childhood from measles-complicated sickle cell crisis. My younger sister, Sussie, was next to die from salmonella-initiated sickle cell crisis. My immediate younger brother with sickle cell disease, Teye, was killed when he and I were struck by lightning. The remaining eight of us share four trait phenotypes and four normal beta globin phenotype. Nine successive generations of my family had patients with sickle cell disease ... Is it possible, therefore, to have me speak about heroin pumps and their lethal consequences in sickle cell disease patients in a detached way?"

Prof Konotey-Ahulu and Prof Graham Serjeant have been campaigning for decades against the use of morphine and "heroin pumps" in the care of sickle cell disease patients, particularly in the UK. The two men have a combined experience of 80 years covering thousands of patients in sickle cell crisis, and eschew the use of morphine and diamorphine in the care of such patients.

In their pursuit of best practice, the two doctors have met opposition from some British haematologists who have poured scorn on their "80 years of experience". But they have equally had support from unexpected quarters, as in one consultant physician in a London teaching hospital who complained some time ago that "haematologists here have created a cohort of [morphine] addicts".

Responding to the NCEPOD report, Dr Konotey-Ahulu wrote: "One enviable qualification we have is this: Both Graham Serjeant and I, in our different countries ... did not give our patients diamorphine and morphine for pain in sickle crisis. In Jamaican experience, morphia or its derivatives are rarely used or necessary. "We do not treat sickle cell disease; we manage the sickle cell disease patient. We have never used hydroxyurea, preferring the 'well-tried public health measures'. We aim at keeping patients out of hospital, preferring nurses and family practitioners as the main carers ... We never subscribe to the haematological opinion that haemoglobin level must always be kept around 11.0 g/dL ... Exactly 43 years ago this May, I listed blood transfusion as one of the precipitating causes of sickle cell crisis. Many haematologists appear not to be aware of this." He continued: "We modify our protocols taking into consideration morbidity outcomes, for why should doctors keep the same opiate protocols when patients are dying from them? We use patients who have done well (those with no hospital admissions for decades) to tell others how they did it. My website has a slot where I let patient achievers (as I call the over 50s and 60s) answer queries from other patients. "I have asked British haematologists why West African and West Indian patients with sickle cell disease who did without morphine in their countries have to be given morphine pumps during sickle cell crises when they come to the UK? ... In the UK, both morphine and diamorphine are used even for children with sickle cell disease, but I know for certain that heroin has no accepted use in the USA."

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Other doctors responding to the NCEPOD report have supported Dr Konotey- Ahulu's viewpoint. One of them, Prof Kwabena Frimpong Boateng, director of car-diothoracic surgery at the Korle Bu Teaching Hospital in Accra, Ghana, wrote that: "The administration of opiates or their derivatives to patients with sickle cell disease is dangerous, as has been demonstrated by the NCEPOD report. The principles of evidence-based medical practice dictate that this practice should be stopped. Sadly this is not the only 'cruelty' that sickle cell disease patients living in the developed world are subjected to."

This view is supported by a former Ghanaian nurse in Britain, Cecilia Shoetan (who lives in Romford, London). She said she lost her 24-year-old daughter suffering from sickle cell disease only minutes after being given diamorphine intravenously when she could not breathe. "Within 10 minutes of being administered diamorphine by intravenous route, she had cardiac arrest, which subsequently led to complications and her tragic death."

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Mawunu M. Chapman Nyaho, an international civil servant in Geneva and a sickle cell disease sufferer herself, wrote to the BMJ: "Two years ago Prof Konotey-Ahulu was flown to Europe to advise in the care of a desperately ill patient. He stopped all opiates, and the patient was up within days. My own brother in the USA, with the same sickle cell disease as mine, was desperately ill. Prof Konotey-Ahulu was contacted. When told my brother was on opiates, he told the doctor: 'Pain won't kill him, but morphine could'. They stopped the morphine, put my brother on just three injections of Ketorolac in 24 hours, with plenty of fluids, and he was up and about. He was discharged the next day (ie, 48 hours after morphine had been replaced by Ketorolac) with instructions from Konotey-Ahulu as to how to stop sickle cell crisis at his age."

Mawunu Nyaho continued: "What I gather is that European and American experts are quite happy to ask and accept advice from Prof Konotey-Ahulu. But from what I read from The Lancet, British experts do not want to do that. So how many more sickle cell disease patients are to die with excessive opiates in the blood before his advice is sought?"

Which raises the pertinent question: Will the sonorous voices of Prof Konotey-Ahulu, Prof Graham Serjeant and the others against the use of heroin pumps be reflected in the new "Standards for Clinical Care of Adults with Sickle Cell disease in the UK" being launched this summer?

In the meantime, Africans and other sufferers of sickle cell disease generally should be aware of the lethal consequences of heroin pumps and should draw the attention of their doctors to the deadly effects that NCEPOD has revealed.

Front view of university College Hospital, London. The NCEPOD report condemned the care of sickle cell disease patients in uk hospitals
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Title Annotation:Sickle Cell
Author:Mbakwe, Tom
Publication:New African
Article Type:Disease/Disorder overview
Geographic Code:4EUUK
Date:Jul 1, 2008
Words:1843
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