Working with the NHS to improve patient outcomes
Whilst we have fostered a strong culture of collaboration amongst VTCTF’s Appearance Collective members over the years, one of the shared challenges discussed at this year’s London Showcase was how charities can best integrate their activities with the NHS and bridge gaps in knowledge and capacity. We talked to two charity Chief Executives about their experiences of working with the NHS as part of their VTCTF funded projects: Kate Naish from The Katie Piper Foundation and Karen Johnson from Facial Palsy UK.
For the Katie Piper Foundation, VTCT Foundation funding was key to building on their relationships with colleagues in the NHS to better understand how it was perceived and where its services fitted. Over an eight-month consultation project, the team were able to really listen to how the charity was viewed and spend time understanding where the NHS perceived any gaps.
Not only did this reflection exercise help foster mutual respect by reassuring all parties that efforts were not being duplicated, but it also identified an opportunity to refocus its priorities and be clearer about what the charity did.
Kate Naish, CEO of the Katie Piper Foundation, explained: “It’s important to be open-minded when you embark on any consultation, as you need to accept that you might get feedback you don’t want to hear. We initially thought the exercise would help us redefine our service delivery as we establish new ways of working. However, one of our biggest learnings was that we’re offering the right services but not communicating them as effectively as we could.”
Having recognised the need to tell its story better, the Foundation revisited its brand, introducing its new “burns rehabilitation charity” strapline to help signpost who they are and what they do, for patients and partners alike.
By re-evaluating the charity’s core priorities and keeping survivors at the heart of the process, the team determined how they deliver a very bespoke service that they don’t want to move away from. This realisation not only avoids the risk of being sidetracked by other pieces of work, but helps define the specialist role the Katie Piper Foundation can play alongside the NHS to provide more continuous and joined-up support.
Another recurring theme at the Showcase was the importance of bridging knowledge as well as capacity gaps to ensure patients get the right support when they need it.
As Karen Johnson, co-CEO of Facial Palsy UK, explained: “One of the biggest problems has always been that GPs don’t know what they don’t know. So they can’t all fully understand everything they might need to about a condition, from when people need referring to realistic recovery timelines. Throw into the mix a lack of awareness that neither physiotherapists nor speech and language therapists are taught about facial nerve disorders at university, and this can lead to patients being referred for inappropriate or contraindicated non-specialist treatments.”
Karen also cited a recent BMJ paper which discussed how only 44% of patients are getting the treatment they need in the critical 24-hour window, meaning they can be left with long-term complications that ultimately increase the overall treatment costs to the NHS and put additional pressure on existing services. A bigger picture view that can prove genuinely life-changing for all involved.
To help combat misinformation and improve health outcomes, Facial Palsy UK sought VTCT Foundation funding to develop a new website and accompanying written guide. Aimed at any medical professional with limited experience in the specific needs of this group and free to access, the charity hopes this clear and consistent guidance will prove an invaluable online resource that supports the NHS’s work while advancing condition-specific care.
The site is complemented by an app that helps patients access the treatment they need to manage their condition. In addition to providing tools to empower people to monitor their symptoms, develop a personalised recovery plan and self-advocate with confidence, the platform has a secondary benefit. The charity hopes the data gathered around the psychosocial impact of a diagnosis, and the pain it causes, will feed into a future study reinforcing the need for a cohesive solution to benefit all patients.
“Having experienced first-hand the struggle to get proper access to care, I know it can be harder to demonstrate the impact of visual-related conditions,” added Karen, “and we hope this multi-pronged approach will draw much-needed attention to the significant psychological impacts of facial palsy.”
If there was any consensus from the day’s discussions, it was the value of constructive dialogue and building trust by providing evidence-based materials that are presented in the right language and format for those they are designed to help.
Ultimately, charities in the visible difference sector bring condition-specific expertise that makes a profound difference to a patient’s quality of life. And it’s this unique knowledge that can prove a vital asset for overstretched health professionals.
Whilst the challenge will always be on how best to collaborate, across charities as well as with the NHS, recognising crossovers in an already overstretched landscape and cultivating synergistic relationships remains the best way to deliver meaningful outcomes and achieve our collective goal.