Access to care: reducing health inequalities for people living with sickle cell disorder

Imagine you have a disease that leaves you in severe pain, and frequently means you need emergency strong opioid pain relief. But your condition is rare, and A&E staff often have very limited knowledge of your condition. And on top of that you’re black, and staff assume you’re drug seeking, and this happens over and over again.

This is just one of the ways people with sickle cell disorder face discrimination when trying to access health care. Is it any wonder you’d rather avoid the health and care service than have substandard care and/or face stigmatisation?

Sickle cell is one of the most common of the ‘rare’ blood disorders and disproportionately affects people from Black African and Caribbean populations. I recently chaired a roundtable on access to care and treatment for people living with sickle cell disorder. I was shocked to hear first-hand accounts of people receiving sub-standard care in health and care settings, either because staff had little or no training in managing the disease, or worse still, because of blatant discrimination. I heard many accounts of people living with sickle cell disorder being refused opioid pain relief because ‘as a black person, they assume I am simply drug seeking’. Getting good care for sickle cell disorder is a postcode lottery – and predominantly comes down to the prevalence of the disorder in your area.

'Getting good care for sickle cell disorder is a postcode lottery – and predominantly comes down to the prevalence of the disorder in your area.'

Taken together, these factors result in people with sickle cell disorder losing trust in the system that is meant to be there to help them, feeling scared to access hospitals, expecting poor treatment from those who are supposed to care for them and fearing that it is only a matter of time until they encounter serious care failings. What arises is a perfect storm of poor access and care. When patients don’t attend emergency services because of the poor care they have received in the past, the system can then fail to ‘see’ them. Those most in need of services are often this very group of people who do not attend, and often the blame is laid on the patient for not making contact with services. At the same time, the gap between those with good health and those with poor health continues to expand. So how can health and care providers overcome some of these challenges – and seek to redress these barriers that only further worsen health inequalities for those living with sickle cell disorder.

'When patients don’t attend emergency services because of the poor care they have received in the past, the system can then fail to ‘see’ them.'

A recent inquiry by the All-Party Parliamentary Group for Sickle Cell and Thalassaemia into avoidable deaths and failures of care for people with sickle cell disorder made a series of recommendations to improve care. The recommendations include:

• improving the training and awareness of the management of sickle cell disorder crises among secondary care staff 

• understanding and tackling geographical variations in care for people living with sickle cell disorder

• undertaking more research to understand the impact of racism on the provision of care 

• developing an ‘end-to-end’ pathway support for people living with sickle cell disorder, which would see partners from across health, housing and education for example, work together to ensure the needs of sickle cell disorder patients are being met.

These recommendations were discussed at the roundtable, and overall participants, which included people with lived experience, felt that the recommendations were right and that systemic change in the management and understanding of sickle cell disorder is needed.

While there has been some progress in these areas, such as NHS England’s recent education campaign ‘Can you tell it’s sickle cell?’, more needs to be done. Given the current crisis across health services, and particularly in A&E and ambulance services, it is easy to see that the issues for people living with sickle cell disorder may be pushed down the agenda. However, if health organisations and integrated care systems are serious about tackling health inequalities and improving access to care for those who are least well served by health services, sickle cell disorder would seem like a very important place to start.