Our goal is to improve the patient experience by offering better treatment outcomes for people with sickle cell disease and thalassaemia.
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.
Adolescent Compliance Adherence & Transition Workshop: Thursday 26 May 2016, Thistle Hotel, London
We are pleased to announce a new workshop focused on transition of sickle cell and thalassaemia patients from paediatric to adult care. This free event is open to all healthcare professionals working with patients with sickle cell disease and thalassaemia. Full details can be found here.
NB: This event is organised by Novartis Oncology. All enquiries should be directed to Cheryl Sayer
Sickle Cell in Focus 2016: Monday 2nd – Tuesday 3rd June
We are pleased to announce that the 10th Sickle Cell in Focus conference returns to the National Heart Lung and Blood Institute (NHLBI), National Institutes of Health (NIH),
Bethesda (near Washington DC), USA on 2nd and 3rd June 2016.
Travel, accommodation and subsistence costs must be met by delegates.
Download the SCiF 2016 programme: SCiF 2016_programme
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!
Prefer to send a letter? No problem. Download a template to send to your MP
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