SCD is the most common serious genetic disorder in Britain, affecting around 15,000 adults and children. In Cardiff, there are 33 adults and 35 children being treated for sickle cell disease. There are a total of 69 sickle patients in the rest of Wales.
Sickle Cell Disease can cause episodes of severe pain known as ‘crises’ which can require hospital treatment and can even cause death without the right care. But fewer than half (45%) of people with SCD say that staff in emergency care settings know enough about the condition. Many with the condition often avoid going to hospital for treatment because of stigma and a lack of awareness of the condition.
Nursing staff will be debating the care of people with SCD at the RCN’s annual Congress in Glasgow on Sunday.
Annette Blakemore is a Sickle Cell and Thalassaemia Nurse, working in Cardiff. She is a member of a Haematology Nurse Forum in Wales which includes nurses from Hywel Dda University Health Board. The forum allows nurses to liaise with each other to share information and best practice. Annette has agreed provide support and advice to her nursing colleagues in other parts of Wales, including sharing the national guidance for SCD.
She said: “When you are born with sickle disease, it is life threatening. When a patient presents in a ‘crisis’ mode, they have to be treated within 30 minutes.
"We need to have computer alerts that pop up when a patient’s NHS number is inputted into the computer alerting staff that that person has SCD."
"My goal is to ensure that nursing staff and medical staff are aware of the disease and what it entails. Training and education is essential. Doctors and nurses need to know what these patients have to go through on a daily basis. You have young people who have had hip replacements at 16 or a 30 year old who has had a kidney transplant. This disease damages organs."
"Many sickle cell patients are attractive, healthy looking people so people don’t really realise how ill the patients are. Patients have told me that clinical staff don’t understand why they need certain medication. The pain can be horrible and patients may need drugs like morphine."
"Young people are suffering now because of the stress of exams and even the change in weather can cause the disease to flare up."
"With regular patients, we can offer excellent continuity of care. They get to know the nurses and the staff who care for them. Local patients will call the Haematology unit in advance to check if a bed is available."
Tina Donnelly, Director of the Royal College of Nursing in Wales, said: “Nurses who specialise in this area of care clearly believe that education and training is lacking for health care staff. Doctors and nurses owe it to their patients to be well-informed about the disease so that patients can the highest standards of care possible.”