Sickle cell advocate calls for medical education after report on 'care failures'

Blood test

Cecilia Shoetan, founder of Lorraine’s Sickle Cell and Thalassaemia Foundation, campaigned for antenatal screening for the blood disease. - Credit: NHS

The founder of a support group for patients with sickle cell disease in east London has called for greater education on the condition after a landmark report outlined “many years of sub-standard care” for sufferers. 

The report, published last week, described how sickle cell patients had lost faith in the health system due to “stigmatisation and lack of prioritisation”. 

It found a “routine failure” to comply with national care standards around pain relief in A&E and described patients’ experiences of alleged racism at the hands of medical professionals. 

Sickle cell disease is an inherited disease with serious and lifelong effects. 

People with the condition produce unusually shaped red blood cells which do not live as long as healthy cells and can block the body’s blood vessels, resulting in "crises" – episodes of pain which can be severe and last up to seven days on average. 

It is particularly common in people with an African or Caribbean family background, and the all-party parliamentary group (APPG) report exposed some of the experiences of racism patients suffered at the hands of medical professionals. 

It said patients reported slurs being used by medical staff and being perceived as drug-seekers when in pain. 

The report, published by the AAPG on sickle cell and thalassaemia, was triggered by the coroner’s report into the death of Evan Nathan Smith in North Middlesex University Hospital.

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An inquest found there were failures in the care he received. 

Cecilia Shoetan, who runs a foundation to support sickle cell sufferers in east London, said she was not surprised by the findings of the report. 

She remembered an incident in which the parents of a sickle cell patient phoned her complaining that their son was in crisis. 

"They had taken him to the hospital and the painkiller they’d given him wasn’t effective.  

 “If he had been at home, he could have taken another stronger one – so he asked for the stronger one; they won’t give it to him.” 

Such stories, she alleges, are “common”. 

One patient, Diane Crawford, told the inquiry: “As sickle is mainly a black illness, they jump to the conclusion that we’re all ‘junkies’ and not in pain at all. 

“If we were cancer patients it would be totally different, they have high doses of morphine, no questions asked and extra if they need it because they are mainly white people.” 

In response to the report, an NHS spokesperson said: “Sickle cell disease can be an extremely debilitating, distressing condition and NHS England recently overhauled the way treatment is delivered to patients with 10 new centres for sickle cell disease being set up across the country, including dozens of specialist teams.

"The report welcomes this, along with our recent announcement we are rolling out the first sickle cell treatment in over 20 years.

“While specialist services are central to these improvements, it’s also important that each part of the NHS works with patients to improve ongoing care.”   

Cecilia set up Lorraine’s Sickle Cell and Thalassaemia Foundation in 2002 after the death of her daughter, aged 24, from the disease two years prior. 

She recalled how she had to convince doctors of her daughter’s condition and said the “disbelief” with which many patients are confronted can endanger life. 

She said: “When she was in crisis and I went with her to the hospital, told them she suffers from sickle cell, [they said]: ‘Oh, she doesn’t look like someone with sickle cell.'

“They wasted so much time, so many hours, they delay, delay, delay, until she died.” 

Lorraine’s Foundation – named for her daughter – is a support group based in Barking, Dagenham and Havering providing advice for people living with the conditions and promoting public awareness of them. 

The Sickle Cell and Thalassaemia Support Group of Barking, Dagenham and Havering were given a tour o

The Sickle Cell and Thalassaemia Support Group of Barking, Dagenham and Havering were given a tour of Westminster with Andrew Rosindell MP - Credit: Archant

A midwife for many years, Cecilia was part of a successful drive to introduce antenatal screening for sickle cell. 

The 75-year-old now lives in Leighton Buzzard and, since the pandemic, the foundation has mostly offered telephone advice.

She said she was looking for someone to take over the foundation: “I can’t carry on because of my age."

Cecilia said she hoped medical staff and the general public would become more educated in spotting the signs of a crisis since the report was released.