Sickle Cell and Thalassaemia Survey 2014

In partnership with Healthwatch Hackney, the Sickle Cell and Thalassaemia patient group based at the Homerton hospital designed and distributed a patient survey to gauge the experiences of Sickle cell and Thalassaemia patients at the Homerton hospital and Homerton community services. The survey was also advertised on the Healthwatch Hackney website.  70 people responded.

Overall, patients reported a mix of positive and negative experiences. Many respondents valued services such as the “Living Well” sessions and some aspects of care, describing staff as professional, supportive, and informative in certain settings.

However, the report identifies several significant concerns. Patients frequently highlighted poor staff attitudes, including perceived rudeness, lack of empathy, and feeling disbelieved about pain levels. Staff shortages were also a major issue, contributing to long waiting times, delays in treatment, and overstretched services. 

Delays in receiving pain relief and treatment were particularly concerning, with some patients reporting long waits even during severe pain crises. Communication between staff and patients was often described as inadequate, leaving patients feeling uninformed or ignored. 

Concerns were also raised about the hospital environment, including poor hygiene, lack of cleanliness, overcrowding, and insufficient privacy. In addition, patients noted inconsistencies in care quality across different wards and between adult and paediatric services. 

Feedback on the Sickle Cell and Thalassaemia Centre was more mixed. While some patients praised helpful staff and good service, others reported difficulties in accessing support, limited outreach, poor communication, and a lack of responsiveness to wider community needs. 

Patients identified several areas that could improve their quality of life, including better pain management, peer support, mentoring, and self‑esteem programmes, as well as more holistic care approaches. 

The report also highlights broader social challenges, such as the need for improved housing support, employment assistance, legal advice, and greater public awareness of sickle cell and thalassaemia. Patients emphasised the importance of reducing stigma and improving understanding of the condition across healthcare services and the wider community. 

Recommendations include ensuring timely pain relief in line with NICE guidelines, increasing patient involvement in service design, improving staff training in sickle cell care, addressing staffing levels and attitudes, and expanding support services such as peer mentoring and awareness programmes. 

Overall, the report concludes that while some services are valued, systemic improvements are needed to ensure timely, respectful, and patient‑centred care for people living with sickle cell and thalassaemia in Hackney.