NHS to investigate the treatment of sickle cell patients
With concerns over the care provided to sickle cell patients, the NHS is carrying out research into the experiences of people with sickle cell. Read more here.
05 October 2022
The has announced that they will be reviewing the support and treatment provided to sickle cell patients. This will include highlighting the first-hand experiences of patients and carers who’ve sought emergency hospital care for the genetic condition.
Approximately , with around 300 babies being born in the UK with SCD each year. While sickle cell disease has traditionally been overlooked, it’s hoped that with the new emphasis on investigating the care provided by the NHS, the awareness around the disease among medical professionals will improve. Here, we discuss the symptoms of sickle cell disease, and the importance of early detection and diagnosis for those born with the disease.
What is sickle cell disease (SCD)?
SCD is a genetic condition affecting the red blood cells. Most people who inherit SCD have problems from an early age, although some children show few symptoms. The most serious type of SCD is called sickle cell anaemia, which can seriously impact patient’s lives.
SCD causes the normally round and flexible blood cells to become stiff and sickle shaped, preventing the blood cells, and the oxygen they carry, from being able to move freely around the body. This can cause episodes of severe and intense pain, often described as sickle cell crises, which are treated with strong painkillers, such as morphine, to help control the pain.
As well as the related pain, individuals suffering from SCD are also at risk of more serious complications such as strokes, infections, acute chest syndrome and blindness. Over time, damage can occur to organs including the liver, kidney, lungs, heart and spleen. Treatment of SCD mainly concentrates on stopping and curing any complications that patients experience.
What are the main symptoms and complications of sickle cell?
With SCD being a genetic condition, and present from birth, most people who suffer from the disease tend to display symptoms from early on in life. While SCD can affect the body in a variety of ways, the main are:
- Chronic (long term) anaemia- This is where there are no red blood cells. This leads to constant tiredness, weakness, and lacking in energy.
- Painful episodes (sickle cell crises)- This happens when blood vessels leading to a particular part of the body become blocked, leading to pain and swelling in the area. The pain can be severe and lasts up to seven days on average.
- Frequent infections- Individuals with SCD are more at risk to infections, especially during childhood. Infections can vary in severity, and can be life-threatening infections, such as meningitis. Keeping up to date with vaccinations and taking antibiotics daily can help reduce the risk of many infections.
The importance of early diagnosis of SCD
In 2008, the UN recognised sickle cell disease as a ‘. With no known cure for the disease, early detection and diagnosis is key to ensure that those born with the condition can begin receiving the ongoing treatment and care that they require.
After the of 21-year-old Evan Smith in 2019, who died following a sickle cell crisis which was mistreated, an inquiry by the was carried out which showed “serious failings” in Sickle Cell care. This included:
- A widespread failure to adhere to national care standards
- Sub-standard hospital care for sickle cell patients in both A&E departments and general wards
- A limited awareness of SCD among health care providers
- Inadequate training on SCD
- Negative attitudes underpinning racism
- Insufficient funding and investments in sickle cell care
This inquiry’s findings were worrying, and it’s hoped that the upcoming investigation into the NHS’s treatment of sickle cell patients will allow for improvements to be made to the care provided.
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