Our goal is to improve the patient experience by offering better treatment outcomes for people with sickle cell disease and thalassaemia.
Two patient representatives needed to help us shape the future of STSTN
STSTN is in a process reviewing what we do as a network. We are beginning a needs assessment exercise to guage what services are currently available in the region and what areas, such as clinical needs, patient services, peer support, education, need attention and development.
Our main aim is to improve the patient and families experience of their treatment and care. To help us with this mission we are now inviting patients and/or family members to express an interest in joining the STSTN Leads Management meetings.
The first commitment would be to attend a Leads meeting that takes place on the 2nd Thursday every other month between 5:30pm – 7:00pm at either King’s College or Guy’s and St. Thomas’ Hospitals campuses.
The next meeting will be on Thursday, 8th September 2016 at King’s College Denmark Hill campus.
What to do
This is a first round call to establish an expression of interest. Please email STSTN to let us know, stating where you receive your care or, if a parent, where your child receives his/her care. This is open to anyone in the STSTN region.
If we receive a large number of people interested in this role, we will organise a separate meeting for you all to meet to discuss and choose amongst yourself who would like to represent the patient cohort.
First nationwide sickle cell survey identifies awareness as key to healthcare improvement
The results of a newly developed survey of people living with Sickle Cell Disease (SCD) in England have revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences, and in turn, the care they receive.
The survey was a Patient Reported Experience Measure (PREM) which ran for a total of six months, from March to October 2015. It was available in three separate versions, suitable for both paediatric and adult patients, and parents/ carers of young SCD patients.
The first of its kind, the tool was intended specifically to understand the lived and healthcare experience of patients with SCD in the UK and thereby improving services by informing future service developments. Developed by the Picker Institute, the not-for-profit organisation dedicated to healthcare improvement, the research was commissioned by researchers from the NIHR CLAHRC Northwest London based at Imperial College London and Chelsea & Westminster Hospital, in partnership with the Sickle Cell Society.
Dr Subarna Chakravorty, Paediatric Consultant at King’s College Hospital NHS Foundation Trust, talks to London Live about the findings.
Luhanga Musumadi on screen to talk about transition from paediatric to adult care
Luhanga Musumadi, Advanced Nurse Practitioner in Haemoglobinopathies & Lead nurse for Adolescent Transition Service at Guy’s & St. Thomas’ NHS Foundation Trust, shares his experiences of managing and running the transition service for young sickle cell and thalassaemia patients. If you would like to know more about the service, please contact Luhanga directly
red cell news Issue 7 out now
Copies should now be available in your local clinic or dowload a PDF here:
As usual, we welcome all your comments and feedback.
And, if you have a sickle cell or thalassaemia related story, an event to publicise or you would like to contribute your graphic or art skills, then please get in touch.
Previous issues can be found on the red cell news page.
Free Prescription Campaign
Help the Prescription Charges Coalition’s campaign for free prescriptions for those with long term illnesses, in particular sickle cell disease and thlassaemia. Send an email to your MP in less than two minutes!
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