Thousands of sickle cell patients to benefit from quicker access to expert NHS care

Thousands of people with sickle cell disease will benefit from quicker pain relief when experiencing a crisis thanks to new specialist NHS centres across the country.

On World Sickle Cell Day, NHS England is announcing the creation of new expert clinics to provide specialist care when people need it most, allowing them to bypass A&E.

Around 15,000 people in England have sickle cell disease. The condition can cause patients multiple periods of intense pain a year – known as a crisis – due to blood clotting in their arteries.

The new 24/7 Hyper Acute Units will be set up in parts of the country with the highest number of sickle patients, initially London and Manchester, later this year.

Around four in five people with sickle cell disease will receive specialist support from staff at the units, meaning they can avoid waiting in A&E, going straight to clinicians who understand their condition and can provide effective pain relief quicker.

The new units are part of a raft of measures taken over the last year, including training for healthcare professionals on sickle cell symptoms, to address longstanding inequalities reported by patients in accessing the right care.

Last month, NHS England and NHS Blood and Transplant also announced a new partnership to provide genetic tests for patients with sickle cell and related conditions, enabling them to receive better-matched blood transfusions – decreasing the risk of side-effects.

Other new steps being taken today include a campaign to ensure those eligible for free prescriptions take up the offer to help them stay well at home, and steps towards a new digital care plan to ensure patients get the right care wherever they are.

NHS chief executive Amanda Pritchard said: “Sickle cell crises can be deeply debilitating, and patients have the right to expect that the NHS will be there for them when they need help most. By creating these new specialist units we hope to be able to provide a much better experience, with much quicker treatment, for thousands of people.

“The new measures we are launching today are the latest, important step we are taking to improve how the NHS meets the needs of sickle cell patients, listening closely to what they have told us would make the biggest difference, and we are committed to continuing this work together.”

The NHS recently launched a campaign to ensure staff at A&Es are aware of the symptoms of a sickle cell crisis, which include severe pain, fever, one-sided paralysis, difficulty walking, sudden vision changes and confusion.  

Professor Bola Owolabi, NHS director for health inequalities, said: “These new hyperacute units will give people with sickle cell the confidence to come forward for care during these intensely painful and life-threatening episodes and receive the care from NHS staff that we would all want and expect in our hour of need.

“On this World Sickle Day, I am determined that the NHS continues to make progress in the support it offers to people with sickle cell, so every individual with this disease feels able to seek help when they need it.”

The NHS wants every person living with sickle cell to have timely and responsive specialist haematology input into their care, especially when they present in crisis.

Steph George, a 31-year-old sickle patient and advocate from North London, said of the new units: “I think it will be very, very positive and I am quite excited to hear this is happening – not having to navigate A&E and being able to go straight to the specialist unit if I’m ever sick will be great.”

NHS England is also committing to ensuring every person living with sickle cell has access to a digital care plan. This will allow healthcare professionals to access a patient’s care plan thus enabling seamless care. 

From this month, patients will also be given a card to help identify them as a sickle cell patient and speed up access to appropriate support when they attend A&E.

On the new patient cards, Steph said: “I am very happy about that because it will take away a lot of the stress, because now I don’t have to explain my illness to someone when I’m feeling unwell.”

Anele Onwuka, a 54-year-old filmmaker from Willesden Green in London, has been treated for sickle cell at his local Hyperacute Unit in Hammersmith Hospital for over 20 years and said:  “I usually have a crisis about 3-6 times a year, however over the last 15 months I have used the unit far more frequently due to a spine condition that brings on more crises.

“When I present at the HAU in extreme pain, the nurses and doctors have access to my personal care plan, and I am given morphine to ease the pain. Because I am known to the HAU and the team there are familiar with sickle cell, I am treated quickly. This means it is normally a short term stay and I don’t have to be admitted to hospital.

“It is very good that more people will now have access to HAUs. I am pleased that I never have to go to A&E and explain over and over about sickle cell because it is an invisible condition. HAUs are essential to improving our experience as patients.”