Wide variations in the quality of services for patients with rare blood disorders are at least partly a result of their prevalence among ethnic minority communities, HSJ has been told.
A major peer review of services for patients with sickle cell disease and thalassaemia in England found just a fifth had adequate numbers of staff with the right skills.
The review by the West Midlands Quality Review Service looked at 34 services across England. Many patients described being made to feel like “second class” c patients as they regularly lost out on beds on specialist wards to patients with white blood cell disorders such as leukaemia.
Sickle cell disease is the biggest genetic condition in the UK, affecting about 15,000 people mainly of black African or African-Caribbean origin. NHS England estimates there are about 1,500 people living with thalassaemia, mainly of Mediterranean and Asian origin.
Both are chronic diseases of the red blood cells which can affect every organ in the body, causing debilitating pain and often requiring regular blood transfusions.
Elaine Miller, national co-coordinator at the UK Thalassaemia Society, told HSJ red cell haematology was the “poor relation” to white cell haematology.
She said: “If these conditions affected the white mainstream population rather than ethnic minority communities, maybe they wouldn’t be so badly overlooked.”
Sickle Cell Society chief executive John James told HSJ race definitely had “a role to play” in the variability of services and the fact they appeared to be “neglected”, even in high prevalence areas.
About 80 per cent of sickle cell patients are in London. However, the review found the makeup of teams in the capital was “extremely variable”.
Nationally, just over two thirds of the 32 centres reviewed had a lead nurse and only 29 per cent of centres provided cover for this individual. The review found a nurse in one organisation who was on call 24 hours a day, even taking calls while on holiday.
Elizabeth Anionwu, who co-founded the first sickle cell and thalassaemia treatment centre in the UK, told HSJ the lack of nurse specialists and apparent lack of involvement of commissioners highlighted by the review was “worrying”.
“I don’t think you would find the same variability with cystic fibrosis for example. I think the equality bodies and the NHS should treat this report as a call to address these inequalities.”
Despite its higher profile there are about 5,000 fewer UK patients with cystic fibrosis than with sickle cell.
The review also found many emergency departments were not following National Institute for Health and Clinical Excellence guidelines on sickle cell crises, meaning patients were often left in agony awaiting pain relief.
NHS England’s recently published service specification for haemoglobinopathy care acknowledges there are “inequities” in access to high quality care due to a combination of the “varied prevalence” of the conditions and “the known difficulties in delivering care to minority groups”.
Review co-chair Jo Howard said most services were a long way from meeting the standards set out in the specification.
“We are being expected to meet these standards and provide this fantastic service, which we all want to do, but there is no new resource and funding in this area is already inadequate as the peer review shows.
“We found lots of example of hardworking, dedicated clinicians who had really fought hard for a good service. If it hadn’t been for that one person that service wouldn’t be there.”
An NHS England spokeswoman said its area teams would work closely with providers to make sure all patients had access to high quality services, wherever they live.
She added: “We will look closely at the findings of the review to assess its findings and consider where further focus may be needed.”