Luhanga Musumadi, Advanced Nurse Practitioner in Haemoglobinopathies at Guy’s Hospital, has been organising workshops for teenagers and young adults with sickle cell for several years. This year’s spring workshop, held at Guy’s, featured short presentations on a variety of subjects relating to concerns that teenagers and young adults may have, including benefits advice and support at university.
A representative from Addmedica kicked off the day with a presentation about the role of using an App, in managing a long term condition. The Sickle-O-Scope app has been designed as a diary to record symptoms and levels of pain, and also to keep track of any patterns linked to pain. Although the app is entirely confidential, there is an option to share the data with healthcare teams to facilitate clinic consultations. The aim for this session was to ascertain the level of interest in the use of an app. Everyone present responded really positively to the app and had plenty of ideas for future developments.
A key theme for the day was self-management, but also finding support when necessary. Valerie from the Sickle Cell Society was there to talk about the support they offer through their Sickle Cell South London Link. This is a new community service that provides support for people of all ages. Valerie talked particularly about the teenage and young adult support groups and their ideas for future group activities.
Two excellent and practical talks were given by Mary Crawford from King’s College London and Daniel Nyakutsey, a Community Welfare Advisor based at Wooden Spoon House. Mary focused on what support universities can offer for people with long term health conditions, but she also shared some useful things to consider when deciding on a degree course and a university. Daniel talked us through the process of the new Personal Independence Payment scheme, which is replacing the Disability Living Allowance for people over 16.
We also heard from Dr Howard and Dr Inusa, from Guy’s and the Evelina respectively, and nurses Kemi and Tolu from the community team at Wooden Spoon House talked us through the services they offer.
The programme for this workshop was packed with interesting, informative and engaging talks. There were plenty of opportunities for questions and discussions with the speakers, but more importantly there were also plenty of opportunities for those present, a mixture of patients and parents, to talk and support one another. One attendee said that the “interaction in the group was fantastic,” and another felt that “it was great to have questions answered and learn about the extra support I can get”.
Thanks to everyone who came along!