Government refuses to add sickle cell patients to free prescriptions list

A health minister has confirmed there are no plans for sickle cell patients to receive free NHS treatment during a landmark parliamentary debate.

Maria Caulfield was quizzed at the ‘Treatment of Sickle Cell’ debate at Westminster Hall, which followed the publication of the No One’s Listening report last month. The report on the disease highlighted avoidable deaths and failures of care for patients.

Labour MP for Streatham Bell Ribeiro-Addy asked Ms Caulfield whether prescription exemption charges would be extended to sickle cell patients.

Confirming that there were no plans for this to take place, Ms Caulfield told the debate on Wednesday: “Most patients are probably young, of working age, and have to pay for their prescriptions but around 89 per cent of all community prescriptions are free.

“For those with long-term conditions, such as sickle cell, there is the pre-payment certificates where, for around £2 per week, no matter how many items they have to order, they’re covered by that certificate.

“That is a system that is in place that often patients aren’t told about.”

The certificate has to be applied for and can cost up to £100 per year, while the prescription exemption list covers illnesses such as epilepsy - which disproportionately affects white people.

Approximately 89.7 per cent of all prescription items are dispensed for free, according to official data, with the vast majority (60 per cent) of all prescriptions issued without charge to patients claiming age exemption.

Nearly half of Black, Asian and minority ethnic households (45 per cent) in Britain live in poverty, compared with 19 per cent of white British people, data from the Social Metric Commission has found.

Sickle cell disease – which mainly affects Black people – is a serious and lifelong health condition causing severe pain and organ failure often requiring hospital admissions.

Speaking to The Independent, Ms Ribeiro-Addy said not extending the exemption from prescription charges suggest “institutional racism”.

“I don’t understand how the government can so frequently challenge the existence of institutional racism whilst charging those with sickle cell for prescriptions,” she said.

“They know it predominately affects people from African and Caribbean backgrounds and yet have no problem making them pay whilst others with similar chronic illnesses are exempt from charges.

“For the avoidance of doubt, this is an example of institutional racism.”

The No One’s Listening report by the All-Party Parliamentary Group revealed that sickle cell patients are grappling with racism and medical negligence in the NHS that is placing their lives at risk.

It was prompted by a coroner’s report into the avoidable death of 21-year-old Evan Nathan Smith, a sickle cell patient, at North Middlesex Hospital in April 2019. The report includes evidence on poor treatment of those living with the illness from patients, clinicians, and politicians.

MPs’ recommendations included the implementation of charge-free prescriptions for sickle cell patients and the development of guidance for A&E staff to ensure that sickle cell patients are prioritised for treatment in the event of medical emergencies.

Labour MP Florence Eshalomi spoke movingly at the debate about her late mother, for whom she was a carer, and her struggle with sickle cell disease.

“The fact that we are seeing our community, not just in London but right across the UK, become more diverse, we have to make sure that people going into the healthcare system understand this disease,” the MP for Vauxhall said.

“I hope that the minister will respond to those critical recommendations in this report and come back with a clear action plan; no one should have to die because they have sickle cell.”

Ms Caulfield outlined some of the work the government is doing to address the issue in the report, including the development of a national database of UK patients with blood disorders to enable healthcare practitioners to tailor services to patients in their communities.

She said: “Any failure in care is one failure too many.”

Since the APPG report was published, Health Education England has made improvements to its curriculum and there are now modules for trainee nurses on sickle cell and thalassaemia as core competencies.

A petition set up by Anusjka Regis-Etumnu, and backed by the Sickle Cell Society, has called for the blood disorder to be added to the prescription charge exemption list and is now signed by over 20,000 people.

“We are requesting that the inherited disease sickle cell anaemia, be placed on the prescription charge exemption list as soon as possible. This will contribute to a better quality of life for people who already suffer so greatly,” the page read.

The society is also a part of the Prescription Charge Coalition, a group of 51 organisations calling on the government to scrap prescription charges for people with long-term conditions in England.

The Department for Health has been approached for comment.