Around three quarters of sickle cell patients who receive care in London now have a Universal Care Plan (UCP), helping to ensure they get the right care wherever they are in the Capital (19 March 2025).

The UCP is an NHS service that digitally shares personalised care plans with health and care professionals across the Capital to help ensure more patients receive the care and outcomes they desire.

Introduced in July 2022 to initially support End-of-Life and palliative care planning, the UCP was extended a year ago this month to support Londoners with sickle cell. Over 7,800 sickle cell care plans have since been created, representing around three quarters of the estimated 10,500 people with sickle cell, receiving care in London.

This is part of wider work to ensure that people with sickle cell receive the right care, including the ACT NOW campaign that launched last year to help clinicians quicky identify and treat patients experiencing a sickle cell crisis.

Sickle cell can be a deeply debilitating disease with patients often experiencing periods of intense pain. It is really important that everyone involved in their care and treatment can access their care plan so they can best meet the patient’s needs. 

Haematology centres agree care plans with patients which may include information about preventative day to day management, guidance for ward staff and guidance for ambulance and emergency care services during a crisis.

Access to care plans is particularly vital when patients are receiving emergency care as prompt treatment can be lifesaving and getting the right care can mean periods of crisis might be shorter, reducing suffering. In the last year patients with sickle cell had their care plans viewed by staff working in urgent care services around 3,400 times, a significant increase from 570 views in the same period the previous year.

Patients can also view their UCP on the NHS app or web browser helping to reassure them that their care plans are communicated correctly to those professionals looking after them.

Work continues across the Capital to ensure every Londoner with sickle cell has a UCP so more people benefit from the joined-up care it supports.

Nick Tigere, Head of the Universal Care plan Programme, said:

“It is great that in just a year around three quarters of Londoners with sickle cell now how a UCP. It is fantastic to hear from frontline staff and patients themselves about how the UCP is helping to ensure they get the right care wherever they are in the Capital. This is testament to the hard work of so many people and I would like to thank everyone involved. Our work continues to ensure that every Londoner with sickle cell has a UCP so more patients benefit.”

Dr Subarna Chakravorty, Consultant in Paediatric Haematology at Kings College Hospital, said:

“The Universal Care Plan has provided Londoners with sickle cell disease with a pain care plan that can be created with the patient and accessed by multiple healthcare professionals, both inside and outside hospital, who are involved in the patient’s journey during an acute painful episode. It is very heartening to see how these care plans are now being used more and more for the benefit of patients. It is now vital that there is continued work with frontline staff to reiterate the importance of using the Universal Care Plan to view these patient-agreed pain care plans.”

Dr Perla Eleftheriou, Consultant Haematologist; Clinical Lead for Red Cell Haematology UCLH; Honorary Clinical Senior Lecturer UCL, said:

“Sickle cell patients deserve consistent, high-quality care. Too often, sickle cell patients face unacceptable delays in pain management and disparities in care, leading to suffering that could be prevented.  It is great to see that most sickle cell patients in London now have their UCP in place and I have seen first-hand how this supports effective communication between staff involved in their care. As one of the evaluation sites for ACT NOW, at University College Hospital the acronym is embedded in the UCPs for every professional involved in a sickle cell patient’s care. Discussions with other evaluation sites suggest that this is already supporting better care and improved patient experience.”

The UCP was further expanded in January to support thousands more Londoners with other long term conditions such as include other long term conditions including dementia, frailty, learning disabilities and autism.

UCPs can be viewed by staff involved in the patient’s care through the London Care Record, some local Electronic Patient Record systems and via a web portal. It can also be viewed by health and care professionals outside of London using the National Record Locator Service, meaning essential information about a person’s urgent care needs can be accessed anywhere in England.

Work is also underway to enable Londoners to create or edit their care plans via the NHS App and login. You can find out more about the Universal Care Plan here.

Developed collaboratively with clinical experts and patients, the ACT NOW acronym supports a rapid clinical response to a sickle cell crisis and draws attention to the areas of care identified as crucial, including continual assessment of pain levels, necessary tests and active listening.

The ACT NOW acronym was referenced in the recent Royal College of Emergency Medicine best practice guidance for sickle cell.  Colleagues working in emergency departments, sickle cell disorder ED bypass units, relevant acute ward settings and ambulance services across England can access ACT NOW materials on the Campaign Resource Centre or through the NHS London webpage.