People living with sickle cell disorder in north central London will benefit from quicker pain relief when experiencing a crisis thanks to new pathways introduced across the country.
In June, NHS England announced the creation of new expert models of care to provide specialist care when people need it most, allowing them to bypass A&E. One of these will now be located at North Middlesex University Hospital NHS Trust (North Mid), in Edmonton, and builds on its current red cell service as well as complementing specialist services at Whittington Health NHS Trust and University College London Hospitals NHS Foundation Trust, and local haematology care at Royal Free London.
In north central London, around 1,200 adults live with sickle cell disease and nearly half report having accessed urgent or emergency care within the last six months. The condition can cause a variety of health problems due to red blood cells forming the “sickle” shape and reducing blood flow to organs and causing chronic low blood counts. This can lead to episodes of severe pain. In these circumstances, admission through busy emergency departments can be exacerbating.
The enhanced service will mean that patients experiencing a sickle cell pain crisis will be able to contact a red cell specialist 24 hours a day, seven days a week, to determine the most appropriate treatment. This would mean speaking directly to clinicians who understand their condition and can provide effective pain relief quicker, through receiving care from North Mid’s haematology day unit, care in the community, via a virtual ward or attending an emergency department. The approach was developed with people living with sickle cell disease, who reported that a hotline would provide better access to specialist help from health care professionals who know their circumstances and care closer to home would help reduce the need to travel.
The new unit is part of a raft of measures the NHS in England has taken over the last year to improve care for people living with red cell disorders, including training for healthcare professionals on sickle cell symptoms and increasing community services for people with sickle cell disorder, thalassaemia and rare anaemia. This is in addition to funding for new blood group genotyping in specialised molecular diagnostics, which is technology that will enable clinical experts to provide an exact blood match for patients living with red cell disorders needing blood transfusions.
Dr Nnenna Osuji, chief executive of North Mid, said: “We want people living with sickle cell disorder to have the confidence that in their time of need, we will be here to care for them. So, this new service at North Mid is a vital step forward in providing a better experience for people living with sickle cell disease needing treatment.
“What has been instrumental in its development is that patients have told us what matters to them. I’m incredibly grateful to people in our local community who continue to feedback to us and hope the improved access to personalised care, advice and support they need, when they need it, will mark a step change in how they receive care.”
Chris Caldwell, chief nursing officer NHS North Central London Integrated Care Board, said: “We are very proud of the whole team effort that has made this new service possible. By taking the time to listen to those with lived experience and their loved ones, we are able to support a better quality of life for those people living with sickle cell disorder .
“Our commitment to reducing inequalities amongst our communities across north central London is integral to our efforts to support people to start well, live well and age well. This service would not be possible without those who work and volunteer to provide care for those living with sickle cell disorder across hospital, community and primary care, and the collective effort to drive improvement and prevent ill health.”