We need your feedback on hospital services

We need your feedback on hospital services

If you use hospitals in Birmingham, Leicester, Nottingham or Southampton for your sickle cell care, we really want your views. We are holding a series of online events in May and June, and invite you to take part. Registration links are below.

Along with the UK Thalassaemia Society are supporting the UK Forum for Haemoglobin Disorders Review Programme.

This means that we are collecting patient feedback on sickle cell services at different hospital locations, to feed into a bigger review of the service people receive. You can be frank with your views and we will provide a report at the end which does not identify the contributors.

Review visits are due to happen at :

  • Birmingham City Hospital and Birmingham Children’s Hospital
  • University Hospitals of Leicester NHS Trust
  • Nottingham University Hospitals NHS Trust
  • University Hospital Southampton NHS Foundation Trust

This is part of a plan to improve care for people with haemoglobin disorders/ Sickle Cell Disorder/ Thalassaemia and Rare Inherited Anaemias. A team of patients, carers and healthcare professionals will look at the care offered by your local service and identify things that are working well and areas where improvements could be made.

Before those visits, we will be holding online meetings with patients and carers, and you are invited to take part. The meeting will last about an hour. For the first 30 minutes we would like to meet with children, young people and their families and for the second 30 minutes with adults.

In particular, we would like patients/families to share:

  • Their experience of the quality of services they receive
  • How well they are involved or engaged about issues regarding their care
  • The support they receive from healthcare professionals and other members of the team
  • Any specific service positives and not so positive

The review team will draw its conclusions from multiple sources and the reports will not identify individuals’ comments.

A representative from the Sickle Cell Society, user and carer reviewers will lead the meeting and a representative from the Midlands and Lancashire Commissioning Support Unit (who are facilitating the review programme) will also attend but only to provide support to the meeting and take notes.

Reviewers will see some information during the visits but will be interested in exploring issues with you about your general experience of care, how you access services and the process for user and carer feedback. We will also ask about information and support that is available for you, how care is planned and monitored, and arrangements for ‘self-care’.

The purpose of the meetings is to gather feedback, and will help to improve the care that your local service offers. Your ideas and suggestions may help people in other areas as well.

Attendance is free, by online meeting, which lasts 30 minutes. Please book a ticket on Eventbrite using the following links, so we are aware of numbers. Children and family meetings start at 4.30pm, and adult meetings start at 5pm :

Birmingham patients : Tuesday 14th May 2024

Leicester patients : Thursday 30th May 2024

Nottingham patients : Tuesday 11th June 2024

Southampton patients : Thursday 27th June 2024