Mum calls for better care for sickle cell disease
BBCThe mother of a teenager with sickle cell disease said medical treatment for the genetic blood disorder was a "postcode lottery".
Nathan, 16, from Northampton, suffers from chronic pain and takes more than 20 tablets a day.
His mother Florence said there should be "equitable care, to access the same treatment in any hospital you go to".
Prof Bola Owolabi, NHS director for healthcare inequalities, said the "NHS has worked hard to improve the quality and experience of care for sickle cell patients".
Nathan, who has a passion for go-karting, has won several competitions. But the level of pain he suffers due to sickle cell means he is often admitted to hospital and has to miss school.
He said: "Sometimes I can’t move my legs because I’m in so much pain so I have to be on quite a lot of morphine just to be able to even stand up or walk.
"Sometimes I can’t really cope and I’ll find myself in quite a dark state of mind where I’m wondering 'why me'."
Florence is calling for better awareness of the condition, which she classes as a disability.
She said it was a "basic minimum requirement" to have the same treatment at every hospitals as well as "access to resources everywhere".
"It shouldn’t be a postcode lottery," she said.
She has joined forces with Northamptonshire Carers, a local support service which provides talks about sickle cell disease to schools, universities, and hospitals.
Project Manager Rochelle Raheem said: "There are failures in the system, there is a huge lack of training to healthcare professionals, a lack of specialist clinicians when it comes to sickle cell."
Ms Raheem said it was important that the community "has the knowledge and tools".
Catherine James-Oliver cared for her sister who died from sickle cell disease in 2024 at the age of 62.
She said: "Whenever she had a sickle cell crisis, every admission [to hospital] was always a battle.
"I’m glad to be working in Northamptonshire where we are looking at making a sickle cell pathway more accessible…for people living with that condition."
She added that the service was working "collaboratively with health and social services, and the Integrated Care Board to make a difference".
Prof Owolabi said there was a range of schemes the NHS was running to improve care for sickle cell patients, including a campaign to boost awareness among emergency care staff of key signs and symptoms of the disorder.
A spokesperson for Northamptonshire Integrated Care Board said it was reviewing the current provision but it had rolled out a specialist training programme for sickle cell.
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