Our chief executive Dr Tom Nutt was one of ten patient organisation representatives, brought together and funded by pharma company Pfizer, to explore and understand the common, fundamental challenges that patients face across the health system that reforms to the NHS can seek to address.
Tom said: “The development of a 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.
“Every day we hear from our supporters battling life changing after-effects following meningitis that they struggle to receive the support they need
Everyone deserves the best possible care
“This was highlighted in our recent report with the health and social care research charity Picker, which found that patients are leaving hospital with little or no follow up, poor information and support.
“When someone is recovering from meningitis, a disease that can have lifelong after-effects, being passed from service to service, having to retell their story, and managing disjointed care adds unnecessary stress to an already difficult journey.
“Now, working alongside these other charities as the Partnership for Change we find the poor coordination of patient care and the frustrations that go with this affect many patient experiences.
“Everyone deserves the best possible person-centred care, always, and we need to put patients and their experiences at the heart of reforming the health service.”
Practical steps for improvement
The Partnership for Change has published a report, “Connected Care: Transforming Care Coordination”, which outlines seven practical steps to improving care coordination. It calls for:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Involve the voluntary and community sector (VCS): ensure VCS involvement in decision-making and signposting, given their crucial role in the health services landscape.
Detrimental to the patient experience
Tom added: “Many patients 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, making 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 of care is hugely detrimental to a patient’s experience.”
The Partnership for Change 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; Pfizer UK; and Sickle Cell Society.
