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Improving joined-up care for Londoners with sickle cell disease

From today the Universal Care Plan (UCP) for London has been extended to support people with sickle cell disease, helping to ensure they get the right care wherever they are in the Capital. But what does this mean in practical terms for people with this condition? We are delighted that Dr Banu Kaya, Consultant in Paediatric Haematology & Co-chair of the UCP Sickle Cell Delivery Group, explains why this matters (14 March 2024).

Dr Banu Kaya

As a Consultant in Paediatric Haematology I have been working with sickle cell patients for over 20  years and in this time there have been many improvements in care. However, the ‘No one’s listening’ report into sickle cell care found there is still much to do to improve standards of care. The report highlighted how awareness amongst professionals needs to improve and negative attitudes towards patients by some health and care staff need to change.

The sickle cell disorders are a group of inherited health conditions that affect the red blood cells. It can be a deeply debilitating condition with patients often experiencing periods of intense pain and for those with anaemia can cause tiredness and shortness of breath. Importantly, it can also increase the risk of serious and life threatening emergencies like sepsis, stroke and lung problems.  

Sickle cell disease is a serious and lifelong health condition, although treatment can help manage many of the symptoms. This will be most effective when personal care plans are accessible to everyone involved in a person’s care. So it is great news that digitised care plans are now shared through the Universal Care Plan.

But why will this make such a positive difference? There are so many reasons but I will explain a few here.


Because of the increased risk of serious and life threatening emergencies prompt treatment can be life-saving. By being accessible to more health and care staff the UCP will help ensure patients are taken to the best place to be treated by teams familiar with their care. For example the treatment might need to start in the ambulance and continue in the emergency department or a specialist unit.

The UCP will also provide health professionals with better awareness of serious complications, allowing prompt recognition so the correct treatment can be started and specialist teams involved without delay.

Better patient experience

Patients often struggle to have their voice heard. By being involved in designing their care plans, they will be empowered to have greater say in their care.

When suffering with intense pain, it can be stressful having to explain their illness to health and care staff. Thanks to the UCP they won’t have to do this. The care plan available on the platform will include details of the medication needed to control their pain as well as general guidance for health professionals to help patients in pain to minimise the suffering.

Quicker care at times of crisis

Due to the red blood cell sickling process patients can experience multiple periods of intense pain, known as a pain crisis. In these situations getting the right treatment as quickly as possible can mean these crisis periods are shorter than they otherwise might be. UCP can help as it will include exactly what is the best treatment and care for the person during these times.

More joined-up care

Many health care professionals are involved in the patient’s care. These teams might work in hospitals, General Practice or community services but being able to see the agreed care plan will help to improve communication and support patients and families with all their holistic needs. For example the UCP can help GPs to manage less severe pain outside of hospital and help with recovery plans when patients leave hospital.

I am really proud to use my experience of treating people with sickle cell disease to support the development of this important project. I have been part of a great team including consultants, pharmacists, emergency department clinicians, ambulance teams, NHS managers and patient representatives who have worked together over many months on this project.

From the outset we have been clear that digitally sharing care plans through the UCP must work for the wide range of professionals involved in someone’s care. It must give them the right information at the right time to support them to provide the best possible care as quickly as possible.

But even more importantly it must deliver better and more joined-up care for the thousands of Londoners with sickle cell, and they should have a better experience of this care. I am excited to see the positive difference this will have on the care patients receive.

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