Universal Care Plan

Universal Care Plans for Patients with Sickle Cell Disease This resource pack is designed to increase awareness and support professionals using the UCP within the Sickle Cell Disease pathway. Key Messages for Sickle Cell Content: - The UCP will support improved patient handover between emergency and acute care for patients experiencing a sickle cell pain crisis. - The new template provides clear, key information and clinical guidance to educate emergency care staff on a sickle cell pain crisis and how it affects patients through individualised care plans. - The new template includes a detailed crisis management plan with directives for ambulance, ED, ward; as well as management at home, and prevention. This can reduce unnecessary hospital admissions, reduce length of stay, ensure that there are reduced delays in accessing treatments and to enable the patient to be managed in the right location at the right time. - Consistent information sharing between services as all services can see and contribute to the same information which reduces clinical conflict. - Information about the patient's communication and accessibility needs or reasonable adjustments to enable patients to share what matters to them and be actively involved in their health and care. - Better understanding of a patient’s physical health presentation and the impact of other physical health conditions on their sickle cell disease. - Increased knowledge of communication needs leading to better patient inclusion in decision making and care planning

What is a Universal Care Plan?
A Universal Care Plan, often referred to as a UCP, is ‘an NHS service that enables every Londoner to have their care and support wishes digitally shared with healthcare professionals across the capital. (1)’

This UCP uses technology which enables information to be shared in real-time across various health care settings across the region. The solution provides interoperability with existing health and care IT systems. It utilises an open health data platform and low code tools, which provides the ability to rapidly build dynamic care planning applications. The platform is based on a central and open persistent data store and uses OpenEHR technology, which enables the system to be interoperable, federated, and enable systems and users to interact with citizen data. The Universal Care Plan reduces duplication of data, improves accessibility and enables London to created shared care plans for a variety of clinical pathways, including end of life care, dementia, frailty, learning disabilities and autism, sickle cell disease and children with complex needs.

It was launched in 2022 and now covers a wide range of conditions, including sickle cell disease. After listening to the difficulties that patients report about accessing appropriate care at times, the aim was for services to create individual care plans that are accessible across the NHS.

The UCP aims to improve healthcare outcomes for sickle cell patients by enabling patients to feel confident that healthcare professionals looking after them will have access to important information including individualised care plans, regardless of which hospital in London they attend.

Your UCP will contain important information about you and your sickle cell disease that may be required by healthcare professionals.

Examples include:

• Preferred name and contact details including your address as well as contact details
  for your primary sickle centre.
• Current diagnoses including sickle genotype and significant medical history.
• Symptom management plan including a sickle pain crisis management plan for use
  in the emergency department.
• Any advance decisions to refuse treatment as well as end of life care wishes and
  decisions about CPR.

Who can see my UCP?
Healthcare and social care professionals in London, such as doctors and nurses, who are involved in your care will have access to your Universal Care Plan (4).

Can I see my UCP?
Yes, you can access your UCP via the NHS app. This can be viewed by opening the App and then going to Your Health > Care Plans > Universal Care Plan.

Can I discuss what is in my UCP?
Yes. If you want to discuss what is in your UCP please discuss this with a member of your haemoglobinopathy team. We will aim to discuss this with each patient during their annual review each year as well.

Do I have to have a UCP?
You can also refuse to have a UCP. We would strongly advise that you have a UCP as this means we can provide optimal care for your sickle cell disease.

We would advise that you discuss that this with your haemoglobinopathy team if this is something you are considering.

The Benefits of using the UCP
Click here to read the benefits of a UCP

References:

1. About – Universal Care Plan
2. No One is Listening Report. No One's Listening - A Report » Sickle Cell Society
3. Universal Care Plan breaks usage records with new integrations and sickle cell care plans - Integrated Care Journal
4. Patients – Universal Care Plan patient information

Click here to read Frequently Asked Questions.