Sickle cell patients are not being properly cared for in the NHS, a damning report has claimed.
Brits suffering from the disease have such bad experiences that they often avoid the NHS for as long as possible, despite debilitating pain, the report commissioned by the NHS Race and Health Observatory found.
The research, undertaken by Public Digital, found they often feel their condition is being undermined by healthcare professionals and that there was a “stark imbalance between the level of mistrust” they faced.
Through poor and inconsistent care plans, terrible communication, and a lack of knowledge of the condition, people were being repeatedly failed by medics supposed to be caring for them.
This was seen in the deaths of soul singer Tyrone Airey, 46, and 21-year-old Evan Nathan Smith who both suffered sickle cell crises shortly before passing.
Sickle cell disease is a group of inherited conditions that affect red blood cells and are particularly common amongst African and Caribbean communities.
It changes the shape of the cells, hindering blood flow, and can even shorten life expectancy by up to 30 years.
One of the main symptoms of the illness are painful episodes which can be “very severe” according to the NHS, and last for days if not weeks.
However the report highlights just how these patients are being let down by the NHS, especially so during crises when they experience debilitating pain.
During these episodes the report found that people would “regularly have poor experiences with ambulance care and A&E” when they went to them for help.
It was this that led to them avoiding seeking the help of healthcare professionals - instead often turning to WhatsApp groups to share tips and resources that may help.
In light of these horrific stories, the NHS is now working to improve the care available to sufferers of sickle cell, including rolling out the first treatment for them in over 20 years this month.
Student Mary Adeturinmo, 29, who took part in the study said she was “often at the mercy of healthcare professionals” when she needed help with her sickle cell.
She added that whilst some of her NHS care was excellent, some of it was “very questionable”.
Poor care of sickle cell sufferers plagued Tyrone Airey before his tragic death on March 16, 2021.
The singer - known as Tai Malone - was in so much pain that he “threw furniture” before dying after a morphine overdose due to neglect by hospital staff.
After a particularly bad flare up of his sickle cell he was rushed to hospital.
Bu when there, an inquest heard that nursing staff had insufficient training to manage Tyrone and his PCA pump - a device which allows patients to administer their own pain relief.
It was this that resulted in the singer-songwriter dying from the toxic effects of a morphine overdose.
A coroner ruled that the staff did not follow the required monitoring and escalation for pain scores or of the monitoring of blood oxygen saturations on air.
The local trust guidance and national guidelines for acute pain associated with sickle cell disease were also not adhered to.
The report also found that care plans for people suffering from sickle cell were lacking, and when present they were often dismissed by healthcare professionals.
Evan Smith died in April 2019 at North Middlesex Hospital, after suffering from sepsis following a procedure to remove a gallbladder stent - sickle cell leaves sufferers acutely at risk of infection.
An inquest heard how he might have survived had he been offered a blood transfusion sooner but the haematology team were not originally told he had been admitted.
Instead, when at hospital, he rang 999 after staff refused his request for oxygen however when he was finally seen by a haematologist later that day, he was prescribed oxygen.
By this point he was already in the early stages of sickle cell crisis and suffered a series of cardiac arrests and died in the early hours of the morning on April 25 that year.
John James OBE, Chief Executive, Sickle Cell Society, said: “It is not acceptable that the NHS continues to provide sub-standard, variable care to those in pain during a sickle cell crisis. Patients are not receiving acceptable, reliable levels of care, with one too many reporting poor experiences in accessing timely medications to reduce their crisis episodes.”
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.
“While specialist services are central to these improvements, it’s also important that all parts of the NHS better understands sickle cell disease and the challenges these patients face, and we are actively offering additional training to help improve this care across the health service.”
