This year, the NHS Sickle Cell and Thalassaemia Screening Programme celebrated its 10th anniversary.
This year, the NHS Sickle Cell and Thalassaemia Screening Programme celebrated its 10th anniversary. The programme is the first of its kind to provide a linked screening programme that enables the sickle cell and thalassaemia antenatal results of the mother – and where possible the father – to be recorded with their newborn baby’s results. The idea behind having a linked programme is that continuity of care can be achieved for the whole family from a range of professionals throughout life, if required.
Sickle cell and thalassaemia are genetic disorders that affect the red blood cells. Sickle cell disease can cause red blood cells to stiffen, affecting the amount of oxygen in the body. People with thalassaemia produce few or no red blood cells at all so need regular blood transfusions.
People can be carriers or have the diseases. For example, sickle cell affects an estimated 13,500 people, with around 240,000 carriers, making it the most common genetic condition in England – more common than cystic fibrosis.
Encouraging good practice among health professionals has been essential to the work of the programme. Evidence of this occurred in April this year, when the nursing competences framework for sickle cell and thalassaemia was published. Accredited by the Royal College of Nursing, the framework sets out the performance criteria required of nurses. This provides guidance on the knowledge and understanding of the conditions expected of nurses of all levels when caring for patients with sickle cell and thalassaemia.
The collaboration, between the Screening Programme, the RCN, the voluntary sector, (which included the views of patients) and health professionals, will help to ensure that the outcome for patients will be to experience a comprehensive and equitable level of care wherever they are in the country.
Although important, providing the framework is only part of the journey. Placing this framework in the mainstream of nursing training and ensuring that it is actively used is the next challenge we face.
These conditions can affect anyone so, no matter where nurses are working in England, there is a possibility that they will be caring for a patient with either one of them. It is vital then, that the nursing framework is incorporated into all nurses’ training plans and reviewed as part of their individual development.
The RCN is setting up a project to help implement the competencies in the workplace so that patients really do benefit from better nursing care.
There are further training opportunities in King’s College, London, which is offering two new courses. One focuses on counselling parents who are at risk of having a baby with sickle cell or thalassaemia, and the other provides the counselling skills to report newborn carrier results to parents.
We are encouraged to see that health professionals are being exposed to these opportunities.
Allison Streetly OBE is programme director, NHS Sickle Cell and Thalassaemia Screening Programme