Less questionnaires, more action.
In 2022, you told us that you had become dissatisfied with filling out lots of surveys and questionnaires but seeing very little in the way of change. TRCN HCC has made a conscious effort since then to only send necessary surveys – and to act upon the information we already had. Some of this has led to the achievements on this page.
Patient and Public Voice Groups (PPVGs)
TRCN HCC hosts a PPVG for both the Sickle Cell Disorder network, and the Thalassaemia and Rare Inherited Anaemia network. These are recommendations from patients that fed into the APPG report No One’s Listening. Since their inception, we have received good feedback that they are working well and have even expanded the Sickle Cell PPVG whilst managing to retain all members.
Patient Advocacy Role
Patients have told us repeatedly that there is a need to have a patient advocacy role that is held by a person with lived experience. TRCN HCC has teamed up with Sickle Cell Society to fund this post for patients in the East of England region for 18 months from August 2024. Congratulations to Toks Odesanmi on her successful appointment to the role. Contact toks.
Research Information Night
Patients informed us that there may have been some avoidable barriers to participation in research studies. In October 2023, TRCN HCC hosted an information evening to discuss the research process and help to break down barriers to participation for patients. The video of this recording is available to view here.
Guide to Living with Sickle Cell Disorder
The Sickle Cell PPVG gave the thumbs up to TRCN HCC to create this guide. The guide itself was co-produced with help from several patients who attend the Sickle Cell PPVG which provided valuable personal insights on how sections should be phrased.
Children and Young Persons Events
In summer 2022, a huge event took place at Tottenham Hotspur Stadium for families affected by Sickle Cell Disorder. You provided overwhelmingly positive feedback on this day but were clear that you would like to similar events in future. This is why we are happy to be hosting a Fun Day at London Zoo in October 2024 for children and young people with haemoglobinopathies.
National Training in Sickle Cell Disorder
On many occasions, patients have been advocates for nationally mandated training of healthcare professionals on Sickle Cell Disorder. TRCN HCC have taken the first strides towards making this a reality by creating a Royal College of Nursing accredited course and gaining national approval of the course by the National Haemoglobinopathy Panel. The e-learning package will be launched in Autumn 2024 on the NHS England Learning Hub.
Menopause in Thalassaemia Sessions
Patients have on several occasions raised their concerns that there is a lack of knowledge and resource dedicated to supporting them through different aspects of ageing with a red blood cell disorder. TRCN HCC are thrilled to say that we will be running a course for Thalassaemia patients, starting in October 2024, to provide some additional support around the subject on menopause.
Nutrition in Thalassaemia Sessions
In Spring 2024, TRCN HCC worked in collaboration with Dr Claudine Matthews and UK Thalassaemia Society to deliver a 4-part lecture series on Nutrition in Thalassaemia. Hailed as a world-first by the UKTS, these sessions were pursued following a request from the Thalassaemia patient group.
Separate Leaflets for Thalassaemia and Sickle Cell Disorder
In January 2024, we hosted a patient engagement evening at the George Marsh Centre to obtain feedback from patients who were likely to access the new Community Red Cell Service. You told us that the leaflets were too focused on Sickle Cell Disorder and that they needed to be separated to accurately depict the nuances of the service between the different conditions. These are now available to view here.