Listening to and supporting Sickle Cell and Thalassaemia Communities: SCAT Centre Insights

Healthwatch Sandwell wanted to capture early patient and carer experiences of the new Sickle Cell and Thalassaemia (SCAT) Centre following its relocation from Birmingham City Hospital to the Midland Metropolitan University Hospital. The purpose of the work was to understand what is working well, identify challenges, and provide recommendations to support improvement as the service settles into its new location. They spoke to 32 people.

Healthwatch Sandwell used a mixed-methods approach to gather anonymous feedback, including a patient survey, visits to the SCAT Centre, and discussions at a regional sickle cell and thalassaemia meeting. The engagement focused on experiences before and after the move, quality of care, access to treatment, transport and accessibility issues, and comparisons with the former service at Birmingham City Hospital. 

Many participants reported positive experiences at the new centre, particularly valuing access to specialist haematology consultants and skilled, caring nursing staff. The modern, spacious environment at the Midland Metropolitan University Hospital was widely seen as a significant improvement on the outdated facilities at the previous hospital, and patients felt the dedicated SCAT setting offered more appropriate care than general wards or emergency departments. 

Despite these strengths, patients identified several important challenges. A recurring concern was the lack of follow‑up after treatment, with patients noting that routine check‑in phone calls used to occur more consistently at the old centre. Limited staffing and a shortage of beds in the day unit sometimes meant delays or cancellations for pain management, contributing to distress during crises. 

Communication was another area of concern, with some patients reporting difficulty contacting nurses outside appointment times and feeling rushed during telephone conversations. A small number of participants described poor experiences at reception or feeling unclear about what they were waiting for, particularly during busy periods. 

Patients also raised wider hospital‑related issues, including restricted visiting hours, lift breakdowns that made access difficult during pain crises, and inconsistent knowledge of sickle cell and thalassaemia among A&E staff. Some patients felt their pain was not taken seriously in emergency settings and reported significant delays in receiving pain relief. 

A detailed case study highlighted how delays, poor communication, and lack of coordination across hospital wards during an acute sickle cell crisis significantly worsened a patient’s physical pain and emotional distress, despite more positive care experiences once specialist staff became involved. 

The report concludes that while the SCAT Centre has made a positive start in its new location, particularly in terms of specialist care and facilities, there are clear areas for improvement. Healthwatch Sandwell recommends strengthening follow‑up support, increasing staffing and bed capacity, improving training for A&E staff, extending visiting hours, ensuring reliable lift access, supporting patients travelling from outside the area, and improving the accuracy of patient records referring to sickle cell and thalassaemia diagnoses.