AS PART of our health series, we are focusing on Sickle Cell Disease. This is a serious and life-long health condition that affects thousands of people across the UK. The hereditary condition is particularly common in people with an African or African-Caribbean family background.
Dr Kilali Ominu-Evbota is Co-lead of the Mid and South Essex Paediatric Sickle Cell Service. Dr Ominu-Evbota explains, “Sickle cell disorder affects the haemoglobin in the red blood cells which makes the cells take up a sickle or – what I like to call – a banana shape.
Normal red cells are shaped like donuts. These banana shaped cells get stuck as they make their way around the body and cause a variety of problems.”
People with sickle cell disease endure severe pain during a ‘sickle cell crisis’ that can occur multiple times per year, often requiring hospital admission so they can be given morphine to control the pain and prevent organ failure which can be fatal.
Symptoms of a crisis include – but are not limited to – severe pain, fever, one-sided paralysis, difficulty walking, sudden vision changes and confusion.
NHS ENGLAND’S LIFESAVING SICKLE CELL CAMPAIGN
NHS England director of healthcare inequalities, Dr Bola Owolabi recently helped to launch a new campaign, ‘Can you tell its sickle cell?’ This is helping to increase awareness of the key signs and symptoms of sickle cell disease – among emergency care staff, careers and the wider public. Alongside this, a brand-new NHS training programme will also help staff better understand the condition, crises, and how to care for patients during their greatest hour of need.
Dr Bola Owolabi said: “We know that sickle cell disease is a debilitating illness that thou- sands of people live with, but has historically been poorly understood, which is why the NHS is launching this brand-new campaign and asking: ‘can you tell its sickle cell?’
“It is vital that we continue to tackle healthcare inequalities head on and this means improving care and experience of NHS services, access to the latest, cutting-edge treatments, and pro- actively raising awareness of conditions such as sickle cell disorder that disproportionately affect some of our communities.”
John James, CEO at Sickle Cell Society said: “It is really great to see the first NHS national campaign for sickle cell disorder go live. We need to significantly raise awareness of this dis- order. Only through increased awareness and education amongst health care professionals, and the general public, will we start to see improvement in patient experiences and ultimately their health outcomes.”
“A sickle cell crisis is an emergency – just like a heart attack or a stroke, it should be treated immediately as a crisis can be fatal” adds Dr Ominu-Evbota, “If a person with sickle cell says they are in pain, we must respect that and treat it promptly and appropriately. So, it is time to ask yourself; Can You Tell Its Sickle Cell?”
FIRST NEW SICKLE CELL TREATMENT IN TWO DECADES
Last year, the NHS struck a deal to roll out the first sickle cell treatment in 20 years, which will help as many as 5,000 people over three years to have a much better quality of life. The new treatment, crizanlizumab, will reduce chronic pain, trips to A&E and will dramatically improve patients’ quality of life.
One of the first patients to have this new ground-breaking treatment on the NHS, is Loury Mooruth, 62, from Walsall in the West Midlands. Speaking after her first treatment, Loury said: “Sickle cell has been part of my entire life. People look at you and think you look fi ne, but they don’t understand the pain and the trauma along with the many trips to A&E.
“When I have a sickle cell crisis, it’s like someone has a knife and they are ripping it through my joints – particularly my hips and legs. “Whenever I thought about having this new drug it brought tears to my eyes. I am so excited and over the moon because it is literally lifechanging for me and my family. I really want to encourage other eligible people with this disease to come forward and get this drug”.
Crizanlizumab, delivered by a transfusion drip, works by binding to a protein in the blood cells to prevent the restriction of blood and oxygen supply that leads to a sickle cell crisis. The drug is expected to reduce the number of times a sickle cell patient needs to go to A&E by two fifths. Sandwell and West Birmingham Hospitals NHS Trust, is one of the 10 new dedicated centres to treat sickle cell disease across the country.
Patients will be able to access the new treatment through their consultant at one of these clinics regardless of where they live in the country. DONATING BLOOD CAN SAVE THE LIVES OF PEOPLE WITH SICKLE CELL Many people with sickle cell need regular blood transfusions to stay alive. As the need for blood donations for sickle cell is rising rapidly, more donors of black heritage are urgently needed– as ethnically-matched blood provides the best treatment.
Dr Rekha Anand, Consultant in Transfusion Medicine for NHS Blood and Transplant said: “You can find out more and become a blood donor via the GiveBloodNHS app or at
Sessions to donate blood are available near you, but if a local session is full, don’t worry. It’s good news because it means we’re getting a good response, please book an appointment for a future date.
Your blood is still needed and you will still save lives. STAYING SAFE WITH THE COVID-19 VACCINE Dr Kofi Anie MBE, is the Psychology Service Lead for children and adults with Sickle Cell and Thalassaemia at London North West University Healthcare NHS Trust, and also has Sickle Cell Disease.
Dr Anie says: “It is quite easy to come into contact with people who might have been exposed to the virus. “Fortunately, those who are vaccinated are much less likely to be hospitalised or to get seriously ill with the virus. This is why the NHS is urging people with sickle cell to talk to COVID-19 vaccination staff or their health professionals who help them to manage their condition, about vaccination.” Data shows that COVID-19 vaccination has been extremely effective in preventing serious illness and deaths from the virus. The NHS vaccines have gone through rigorous testing, including on people from our community, so we can trust it to protect us against the virus.
EXTRA PROTECTION THIS WINTER
With winter ahead, flu and COVID vaccines are again being offered to older people, pregnant women and others at greater risk from these viruses, for example because they have certain health conditions. Getting any flu and COVID-19 vaccines you are offered is especially important as colder months draw in, and these viruses circulate most. But it’s not too late to come forward for an earlier dose of the COVID-19 vaccine. Getting all the doses you need gives you and your loved ones the best protection from serious illness and hospitalisation.
Dr Anie adds: “The COVID-19 vaccine is safe for people with one or more long-term conditions. Many people with sickle cell disease, including me, have already been vaccinated against COVID-19.”
Dr Anie also calls on colleagues working on the NHS front line to do their bit by getting vaccinated, saying: “It is very important to be fully vaccinated to help keep all our patients safe, and as NHS staff we have the moral responsibility and duty of care to do this.”
You can book an appointment for any dose you are eligible for at www.nhs.uk/covid-vaccination or scan the QR code to book online. You can also phone 119 for free or visit a vaccination walk-in vaccination site without an appointment – see www.nhs.uk/vaccine-walk-in
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