Diane with members of the Sickle Cell Society at a recent event
Sickle Cell is the England’s most common inherited blood disorder with over 12,000 sufferers.
It affects people mainly from black African and Caribbean background and I myself have known people who have suffered the effects of this disease.
I am currently the chair of the All Party Group on Sickle Cell and Thalassaemia.
In June 2012 the Sickle Cell and Thalassaemia Society had a meeting in Portcullis House, Westminster. In this meeting we discussed what progress had been made in improving the transition for young sufferers from paediatric care to adult.
Research has shown that mortality for Sickle Cell sufferers increases when they move from children’s to adult care as often the standard of care is not as high and the close relationship which many enjoy in paediatric is lost in adult care, a relationship which can is beneficial for Sickle Cell sufferers.
The APPG is looking at ways that we can get government to take seriously the issue of transition care for young adults with Sickle Cell and Thalassaemia.
At this meeting we heard from Luhanga Musamadi, Clinical Nurse specialist for adolescences and young
people with Sickle Cell at St Thomas’s hospital. Luhanga is the first of his kind in this country, a clinical nurse specialist who with a specific focus on helping young people of the transition from paediatrics to children’s care.
The results at St Thomas’s have been dramatic and there are now nurse specialist with a focus on transition care in hospitals across the country.
I will soon be leading a delegation of the APPG to the Department of Health on issues surronding Sickle Cell.