This summer the sickle team at King’s organised two events for patients. In July we held a patient forum, to which we invited all sickle cell and thalassaemia patients at King’s, and in August we held a transition workshop for patients aged 14-18 who are either approaching transition or going through the process.
On a Friday evening in July approximately thirty patients gathered in the Boardroom in the Hambleden Wing to take part in our forum. The hot topics for discussion included stem cell transplants, psychology, hydroxycarbamide, and managing pain among others.
Gary Bridges, adult psychologist, introduced the new adult psychology service at King’s and Dr Victoria Potter gave a talk on stem cell transplants. Transplants for adult sickle cell patients is a very exciting topic at the moment and those in attendance had lots of questions for Dr Potter.
We held the transition workshop on a somewhat grey Saturday in early August and welcomed a number of teenage patients and their parents. We had an interactive programme planned for the day that included a talk from psychologist Gary Bridges and Consultant Haematologist Sara Stuart-Smith, as well as a tour of the adult wards, A&E and outpatient unit.
At the transition workshop with KCH transition nurse, Giselle Padmore-Payne.
For part of the afternoon we asked patients to design their own goodbye cards that the paediatric team could give to patients when they transition to the adult service. We awarded prizes for the designs (with the prizes kindly donated by SickleKan and Roald Dahl’s Marvellous Children’s Charity), and hope to get them printed to use in the future. Take a look at the wonderfully artistic designs:
Goodbye card designs
The focus of both events was encouraging patient and their families to provide feedback on the service at King’s. Feedback is so important in helping us shape the services we offer and make improvement that have a positive impact on the people who actually use those services. Some common themes came up across both events, including: experiences in A&E, improving education/training for nurses and doctors, raising awareness of sickle cell disease, improving the ambulance service (read more about a recent update here), tailoring support and services to individual needs, and education for siblings, family and friends. Many of the teenagers at our transition workshop also suggested the idea of mentors – people with sickle cell who can support and mentor other patients.
The team at King’s plan to hold a patient forum twice a year and continue with regular transition workshops in the future. Feedback from the patients, parents and carers who use our service is vital to making worthwhile changes and improving the experiences had within this hospital and the network as a whole.
Thank you to everyone who attended these events and to the sickle team at King’s for facilitating them! A huge thank you also to Roald Dahl’s Marvellous Children’s Charity and SickleKan for supporting the transition workshop and providing prizes and goodies.
If you are a patient at King’s and would like to find out when our next forum will be, please ask your nurse or get in touch with Eleanor (firstname.lastname@example.org).