Oldham girl with rare blood condition receives life-changing support from new transfusion programme

People living with a serious blood condition in the North West are benefitting from a new service that provides emergency red blood cell transfusions 24/7.

The collaboration between NHS Blood and Transplant (NHSBT) and Manchester University NHS Foundation Trust (MFT) is a lifeline for patients living with Sickle Cell Disease.

Sickle Cell Disease (SCD) is the country’s fastest growing genetic blood disorder and is more prevalent in people of Black heritage.

The serious, lifelong condition can cause organ failure, strokes, loss of vision, and can be fatal.

Tiffany Salako, who is 16 and from Oldham, was diagnosed with SCD as a baby.

While growing up she experienced many painful episodes, known as crises, which affected her breathing and ability to walk.

She was admitted to hospital on a number of occasions, but was unable to receive regular blood transfusions due to the risk of a dangerous build-up of iron in her blood.

At the age of 14 Tiffany was placed on the red cell exchange programme at Manchester Royal Infirmary and has some of her blood replaced by donor blood every six weeks, a treatment that does not carry the same risks to her iron levels.

Tiffany, who is studying A’levels at Oldham Sixth Form College, said: “The exchanges have made such a difference to my life.

"I’m so much more active now.

“The pain of a crisis could be terrible.

"During the bad ones I felt I couldn’t breathe, it was so frightening.

“Now, after a blood exchange I feel good and any weakness is gone.

"I still get pain sometimes, but I haven’t suffered a crisis or been admitted to hospital since.

"I can lead a normal life.

“I had never really thought about blood donors before, but now I know the difference they make to people like me. I’m grateful to everyone who gives blood.”

Patients living with SCD produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels.

Some patients with severe SCD require a complete blood transfusion, known as a red blood cell exchange (RCX), to remove the ’defective’ cells and replace them with healthy cells from donors using a machine.

Some patients either require this routinely for the rest of their life to help prevent or reduce the painful symptoms and complications, or as a one off in life threatening situations where a patient becomes acutely unwell.

There are over 615 people being treated for SCD at hospitals across the North West of England.

These patients are now benefitting from the collaboration between NHSBT’s Therapeutic Apheresis Services and MFT in its role as one of the UK’s Haemoglobinopathy Coordinating Centres (HCC).

This partnership includes an outreach programme that enables patients to receive treatment at a hospital close to them without the need to travel into Manchester regularly or in an emergency.

The partnership also provides an out of hours emergency services for patients in the Manchester region.

Dr Joseph Sharif, Consultant Haematologist at MFT, said: “We are delighted to partner with NHSBT to establish a 24/7 emergency automated red cell exchange service across the region.

“Sickle Cell Disease is a serious condition, and people with SCD are at risk of serious complications and can become extremely unwell without treatment, but most hospitals do not have the facilities to offer this.

"This new service agreement and referral pathway ensures that patients can now access this vital emergency treatment at a hospital close to them across the North West."

However, with cases of SCD increasing across the country the need for regular blood donors, especially from people of Black heritage, is increasing.

Teresa Baines, TAS Nursing Head and Deputy Chief Nurse from NHS Blood and Transplant, said: “This programme would not be possible without the generosity of people who give blood.

“The NHS always needs new donors, and we especially need more donors of Black heritage to help sickle cell patients like Tiffany who need ethnically matched blood.

"I’d encourage anybody who is able to give blood to come forward and help save lives.”

Darren Banks, Chair of the MFT Sickle Cell and Thalassaemia Services Partnership Board, welcomed the announcement.

He said: “This is a significant step forward in enhancing the NHS support available to patients with Sickle Cell in the North West, but we need to acknowledge that much more work needs to be done to help address the inequalities that remain today.

“Key to this is partnership working by the different organisations and groups that are actively working with the communities affected by Sickle Cell Disease.

"Developments such as this show what can be done to benefit people across the region.”

If you’d like to become a blood donor you can register today and book an appointment by visiting blood.co.uk, downloading the GiveBloodNHS app or calling 0300 123 23 23.

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