Supporting people living with sickle cell disease in Haringey
Sickle cell patients face a range of psychosocial challenges which also impact their families and close friends. Addressing these challenges can help to better support people with sickle cell in the management of the condition.
Many people with sickle cell report that there is often a low priority given to the challenges around workplace discrimination and accessing benefits on the part of practitioners and healthcare professionals. This is on top of already facing stigma, delays in care, allegations of exaggerating their condition, being discredited, racism, microaggressions, inadequate pain management and poor assessments.
Primary and secondary care in North Central London has faced hefty criticisms for being slow to address the concerns of people with sickle cell disease, but it is apparent that there are positive moves to address longstanding issues at North Middlesex Hospital and the George Marsh Centre. The 2024 launch of the new Community Red Cell Service for Adults with Sickle Cell, Thalassaemia and Rare Inherited Anaemias is also a demonstration of increased recognition of red cell disorders locally.
Improvements at North Mid
There have been significant improvements which have been made by North Middlesex Hospital which Healthwatch Haringey has observed. For instance, on the Haematology Day Unit the plan is for there to be eleven new positions:
- Two advanced nurse practitioners
- A community arm with a community matron
- A service manager
- Three Band 7 nurses
- One Band 6 nurse
- One practice development Nurse
- Additional consultant time
- Additional registrar time
Our research methods
- Semi-structured interviews with key individuals in Haringey who have sickle cell disease.
- Semi-structured interviews with healthcare professionals working with people who have sickle cell disease.
Key themes from interviews
After the interviews with key participants these were the main themes which emerged:
- Experiences with sickle cell crises
- Traumatic experiences within healthcare settings
- Managing chronic pain for people with sickle cell disease (SCD)
- A lack of knowledge of the condition across primary, secondary and tertiary care
- A lack of employment and benefit support
- Haringey as a borough of sickle cell health activism
- The medicalisation of people with sickle cell
- The NHS and historic institutional racism
- Improvements at North Middlesex Hospital and across North Central London
Your whole-body aches. When you go to hospital they give you what they can, like you’re screaming for pain relief but then you’re a bit worried they might think you’re a junkie. You know so you don’t want to answer too much, they can’t give you too much either because when I had the attack my blood pressure was so low there’s only so much morphine your body can handle.
Key recommendations
- Enhancing the function of sickle cell centres which have staff trained in managing the conditions are key and have been shown to result in reduced anxiety among patients with sickle cell disease.
- Developing better integrated support for accessing benefits for people with sickle cell and supporting people with sickle cell around employment.
- Increased understanding of psychosocial issues with a greater focus on the wellbeing of people with sickle cell, such as wellness interventions and emotional support.
- Providing training for healthcare professionals regarding sickle cell disease which address management of the condition, patient needs, discrimination in primary and secondary care and raise awareness of implicit biases.
- Initiatives for trust-building among patients and medical professionals to reduce stigma.
- Focus on initiatives around nutrition and wellbeing which reduce sickle cell crises, disease severity and hospitalisations, thereby contributing to an improved quality of life.
- Addressing any pre-existing multifactorial environmental stressors such as poverty and food insecurity that contributed to the initial hospitalisation.
Downloads
Supporting people living with sickle cell disease in Haringey (Summary) September 2024
