How did you get into sickle cell nursing ? I qualified as a nurse in 1985 in West Sussex and then as a midwife in 1988 . I practised as a community midwife in Enfield , north London for about eight years .

In the 1980s there were few haemoglobinopathy counsellors but there were midwives with an interest in caring for women with sickle cell disease . At the time , Enfield didn ’ t have a large ethnic population so the maternity unit had no sickle cell counsellor . Occasionally , though , women came in from London who were carriers . In those days we could do a week ’ s refresher course as part of our learning and development and I wanted to do something with sickle cell , out of personal interest . So , I did the course at Middlesex University and then went into haemoglobinopathy nursing .

In 1998 I went to work at Whittington Hospital , which serves the London boroughs of Camden and Islington . I worked as an haemoglobinopathy counsellor for 12 years before going to Guy ’ s and St Thomas ’ to become the community clinical nurse lead for sickle cell and thalassaemia for south-east London .

What does your role as community matron involve ? Sickle cell is a lifelong condition and the care we offer is a cradle-to-grave service . We start with genetic counselling and prenatal diagnosis , and provide ongoing care and support . We work in the boroughs of Lambeth and Lewisham and I ’ m based at the local centre . The job involves looking at the workforce to ensure there is cover for each clinic . We do home visits , inform parents of their baby ’ s results , conduct genetic counselling and screening , raise awareness in schools , and educate other healthcare professionals and the general public .

References 1 NHS sickle cell and thalassaemia screening programme . tinyurl . com / SCT-NHS 2 Sickle cell crises ( sequestration ). tinyurl . com / sickle-crises 3 Sickle Cell Society . The sickle cell trait . tinyurl . com / SCS-carriers 4 Sickle cell Society 2021 . No One ’ s Listening . tinyurl . com / SCS-report 5 Sickle Cell Society . Crizanlizumab – a simple guide . tinyurl . com / SCS-crizan

As a clinical nurse manager , my duties also include one-to-one staff supervision , staff support and development , appraisals and revalidation .

What care do you provide for those with sickle cell ? The first challenge is to support parents to give their child the best possible start , making sure they live in adequate accommodation . We also give advice on avoiding triggers for a sickle cell crisis , such as keeping the child hydrated and warm , and avoiding drafts . As the child gets older , we go into schools to support school nurses , special needs staff and health visitors , working closely with them to ensure better outcomes . We also support adult patients to live well with their condition .

We empower our patients and offer ongoing support to adults living with sickle cell . Some of them are on disease-modifying treatment , so we make sure they understand the importance of collecting their prescription , taking the medication properly , and attending appointments and follow-ups .

The illness has an economic impact and some of the patients are in employment where it ’ s hard for them to take time off for their appointments or if they have a crisis . We work with welfare support advisers who can help with housing and financial issues .

When is sickle cell typically diagnosed ? The NHS national antenatal and newborn screening programme 1 now tests babies at day five so we will know their haemoglobin status going forward . But there are obviously some adults who were not tested as children . There are conditions like sickle cell haemoglobin SC ( HbSC ), which can be slightly milder than haemoglobin

SCIENCE PHOTO LIBRARY