Summer events
We have a number of workshops and feedback sessions over the summer months. The upcoming events are listed below and more will be added as dates are announced:
Sickle Cell and Genomics Workshops
Historically, research in sickle cell has not been prioritised. Because of this, there are few treatment options for people who are living with this condition. There is also limited understanding of how and why sickle cell affects people so differently, making complications difficult to predict and treatments hard to develop.
We are working with Genomics England, part of the Department for Health and Social Care. They are building a sickle cell data set comprised of genomic, clinical and associated patient data. The aim of this is to improve and increase future research opportunities in sickle cell.
The aim is we to help research to better understand why sickle cell presents differently and enhance innovative and collaborative research. This will help to better understand the condition, and to encourage the development of new and better treatments for patients.
We’re thrilled to announce a series of upcoming workshops designed to gather insights from people with sickle cell disorder, sickle cell carriers, and carers. These sessions will focus on identifying priority research areas in sickle cell and genomics.
Throughout July and early August, join us for both face-to-face and online workshops to ensure everyone can participate. In-person sessions will be held in London, Birmingham, and Manchester, while our online workshops will be accessible to all.
This is your chance to voice your opinions and shape the future of sickle cell and genomics research. Your input is essential in prioritising areas that will enhance treatments and therapies for sickle cell disease.
We will start with an online event for sickle cell clinicians on the morning of July 15th. Contact rashae.peart@sicklecellsociety.org for more details and to register.
Feedback sessions
In line with the World Sickle Cell Day theme of ‘stronger together’ we are running a short online session on June 27th for Southampton sickle cell patients.
We are supporting a programme of hospital sickle cell service reviews. Our role is to feed into planned hospital visits with some anonymous patient feedback.
You can be frank with your views and we will provide a report at the end which does not identify the contributors.
A review visit to University Hospital Southampton NHS Foundation Trust is taking place in July. The purpose of the review 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 the visit, we would like to hold an online meeting on Thursday June 27th with patients and carers. 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.
A representative from the Sickle Cell Society, user and carer reviewers will lead the meeting and a representative from the 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’.
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.
The purpose of this meeting 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 Microsoft Teams. Please book a ticket so we are aware of numbers :
Thursday 27th June 4.30pm -5.00 pm – Children, young people and their families
Thursday 27th June 5.00pm – 5.30pm – Adults
Focus Groups – Clinical Trial
We’re working with the NHS Race and Health Observatory and Queen Mary University to run focus groups in the coming weeks.
We are conducting two focus groups to discuss a new clinical trial aimed at improving the management of acute pain crises in sickle cell disease. Your feedback will help shape this important research and ensure it meets the needs of the community.
Who Should attend? Adults with sickle cell disorder, Parents and caregivers of those with sickle cell disorder.
Dates – 5th or 8th July by Zoom. More information and how to register in the flyer link, below :
