Alopecia UK, in partnership with nine other leading patient organisations, is calling for care coordination to become a central focus of the government's planned NHS reforms.

While the NHS is rightly considered one of Britain's greatest achievements, recent reports have shown that the public's satisfaction with the service has reached an all-time low. The development of the new NHS 10 Year Health Plan offers an exciting opportunity not only to reflect on past challenges but also to reimagine and reinvigorate how care is delivered for patients in our country.

At this time of great opportunity, the Partnership for Change, a collaboration of 10 leading patient organisations (including Alopecia UK) and Pfizer set out to understand the common, fundamental challenges that patients face across the health system that reforms to the NHS can seek to address. Representing patient communities across -the healthcare spectrum, the Partnership for Change hears directly about the challenges patients face in their interactions with the health service. These frustrations commonly coalesce around a common theme: poor coordination of patient care.

Poor care coordination: much more than an inconvenience

Many people report finding themselves trapped in a cycle of repeating their health story and medical history, chasing referrals, and navigating a fragmented system. The burden of managing care coordination often falls on the patients themselves, or their carers. 

This makes the system hard to access for those less able to advocate for themselves, and frustrating for those who can. This is not just an inconvenience: poor coordination can make a patient’s experience much worse. It can lead to delayed diagnoses, missed treatments, and ultimately poorer health outcomes, while entrenching and exacerbating health inequalities.

Seven steps to better care coordination

The report, “Connected Care: Transforming Care Coordination”,  recommends taking the following steps to improve care coordination:

1. Strive for simple, clear communication between health services and patients: Timely, accurate communication between healthcare professionals and patients, with clear roles and responsibilities within healthcare services.
2. Elevate patient experience to equal importance with clinical excellence: Health services must demonstrate that they value patient experience by prioritising patient feedback alongside clinical effectiveness and safety, and involving patients in care planning.
3. Develop a framework for acting on existing patient experience data: Systematically collect, organise, and use patient experience data, basing accountability and commissioning on these outcomes.
4. Promote a culture of collaboration and coordination through existing networks, using a proactive behaviour/culture change approach: Shift from siloed working to a culture of collaboration, fostering trust, safety, and a shared purpose between organisations. Look for ways to build collaboration from the ground up, in addition to promoting collaboration from the Department of Health and Social Care (DHSC), by identifying and scaling-up successful local care coordination initiatives.
5. Develop the digital facilitation of care coordination: Use digital tools, like the NHS app, to enhance coordination while maintaining strong interpersonal relationships and respecting digital preferences.
6. Focus on transitions: Use care coordinators to ensure smooth transitions between all transition points, such as between primary and secondary care and between child, adolescent and adult care, particularly for complex, rare, and long-term conditions.
7. Involve the voluntary and community sector (VCS): Ensure VCS involvement in decision-making and signposting, given their crucial role in the health services landscape.

Sue Schilling, Chief Executive of Alopecia UK, said: 

"Every day we hear stories of people not getting a referral, or access to treatment, or those who are signed off from secondary care without any care at all. Proper coordination between healthcare providers, mental health professionals, dermatologists, and wig suppliers, would offer a more compassionate and supportive healthcare journey. It takes enormous internal resources to keep fighting for support when you are most in need, and many people give up, they tell us it's too hard to navigate the "system". That is why coordinated care matters, imagine if measures were aligned to patient voice. Perhaps that would lead to everyone having a better chance of accessing the care they need in a format that worked for them."

Rachel Power, Chief Executive of the Patients Association, said:

“Every day, we hear from patients who are left to shoulder the burden of navigating a fragmented health system. Patients should not be required to continually repeat themselves, chase appointments, and coordinate care across siloed services. It’s exhausting, disheartening, and ultimately harmful. This report makes it clear that better coordination isn’t a ‘nice to have’, it’s essential to improving outcomes, reducing inequalities, and restoring confidence in the NHS. By placing coordination at the centre of reform, we can help build a health service that truly meets the needs of every patient.”

Dr Berkeley Phillips, Country Medical Director, Pfizer UK, said:

“This report shines a light on the importance of good coordination of care, and why this is a key priority for the Partnership for Change, a collaboration of 10 patient organisations and Pfizer.  We believe that the recommendations made are clear and actionable, and must be considered within the new 10 Year Health Plan for the NHS, to help deliver improved levels of  care for patients regardless of their health condition.”

The Partnership for Change is a collaboration of 10 leading patient organisations, brought together and funded by Pfizer. The Partnership is comprised of:

• Age UK
• Alopecia UK
• Blood Cancer UK
• Fight Bladder Cancer
• Genetic Alliance UK
• Kidney Care UK
• Meningitis Now
• The Migraine Trust
• The Patients Association
• Sickle Cell Society