Reviewing specialised services for haemoglobinopathies

NHS England is responsible for commissioning specialised services for people living with sickle cell disease (SCD), thalassaemia (which are known collectively as haemoglobinopathies), together with other rare anaemias. As numbers of people living with these conditions continue to rise, including those living in suburban areas, further from our larger hospitals, NHS England is looking at whether services are currently provided in the right way to ensure that wherever you live you can access the best possible care enable equitable access to the highly specialised treatments that can be required.

Background

In England there may be as many as 15,000 individuals with sickle cell disease and almost 1,500 with thalassaemia, and numbers are growing.

There are currently 23 providers of specialised haemoglobinopathy services across England and these are all required to support local clinical networks. These conditions tend to affect people from particular ethnic groups. SCD tends to be more prevalent in African-Caribbean communities and thalassaemia is more prevalent in communities of Asian and Mediterranean origin. As life-long conditions, there is an increased risk of developing chronic complications over time.

NHS England commissions all inpatient care provided by Specialist Haemoglobinopathy Centres where the cause of the admission is related to these conditions. This includes services delivered on an outreach basis as part of a provider network. People with SCD and thalassaemia also access a range of other healthcare services which don’t fall under specialised services, and these are usually funded locally by Clinical Commissioning Groups (CCGs) and aren’t directly in scope for this review.

NHS England spends in the region of £64 million on specialised haemoglobinopathy services and approximately £20 million on chelation each year.

What do we hope to achieve?

Feedback from professionals, patients and carers has already highlighted a number of opportunities to improve care which we hope to address as we are reviewing services and developing a new model for care.

Experience of care across the country is variable, with difficulties accessing the right services in some parts of the country, so we need to ensure that people can access high quality, responsive joined-up healthcare wherever they live.

We have highlighted several key areas that we hope the review will address:

  • Enabling consistent access to pain management services where appropriate
  • More flexible appointment times – particularly for school age children and working people
  • Improved communication between health professionals
  • Better access to transfusion
  • Clearer transfusion protocols / policies
  • Better access to psychological support
  • Improved transition arrangements / handover
  • Addressing staff shortages
  • Patient involvement in their own care and in service design and monitoring

Over the next few months we will be exploring potential new ways of working that could help address some of these identified issues to develop haemoglobinopathy services for the future, and we will want to test out possible solutions with patients and carers.

If you are holding a group or event over the next few months that we could visit to share ideas and hear your feedback, please let us know at England.npoc-bloodandinfection@nhs.net.

To receive regular updates to your inbox, please sign up as a registered stakeholder for the Haemoglobinpathies CRG (Clinical Reference Group) on the NHS England website.