An honest account from The Katie Piper Foundation
Intro: Memes and YouTube clips about the digital world of Zooms, from law officials mis-using cute cat filters to Jackie Weaver, brought our team much needed laughter in the early phases of the pandemic. But the urgent need we were hearing about from survivors, was no laughing matter. Coming up to two years since all of us in the Appearance Collective shifted towards digital service delivery, we thought you might be interested to hear about the lessons we learned. Spoiler alert! We now have a digital service that is consistently showing positive impact for survivors of burns and people with traumatic scarring. We aim to sustain this service and have it at the heart of our work.
Key questions we had to answer: We had been delivering live-in stays for survivors in our Merseyside Rehabilitation Centre. The last survivor of burns to be at the Centre for a full stay, left just a few days early, when the first lockdown happened. The overarching question we faced in March 2020, was ‘to what extend could we replicate what we’d done before face-to-face, digitally?’. Which lead to many other questions.
To furlough or not to furlough? Within the first few weeks, we spoke to other healthcare providers and realised that many were furloughing the majority of staff and sign-posting to other services. To be true to one of our five values of being ‘survivor led’, we spoke to survivors about this. They were all very open to switching to digital sessions. But could we pull off switching people with in-person skills to online, with the digital knowledge and tech we had in place? Fortunately, the staff team were already working remotely, connected via Microsoft Teams, so we had a head start on being tech-savvy on running video calls, screen sharing and understanding the pros and cons. We shifted our small core team of, at the time, one burns physio Sam and our Head of Rehabilitation psychotherapist Johanne to work digitally. Our circle of amazing sessional workers also contributed goal-focussed sessions as part of tailored online programmes. So we only minimally furloughed mainly for childcare reasons and they were team mates who weren’t delivering directly.
Within weeks survivors were telling us of the great impact of the switch over. But around two months in, we realised that we had to shift from trying to replicate, to adapting and evolving the service to fit the realities of people’s home lives. Survivors couldn’t carve out whole mornings of days, back-to-back when they were in their own homes rather than leaving home for a residential service that they could fully immerse in. For that reason, a main adaptation was that programme length became much longer, from one month to between four and eight months. We could make our sessions even more translatable to exactly what survivors need to reach independent in their authentic lives. For example, Physio Sam was able to give safe and effective video sessions to a young survivor on how best to get in and out of her own bath at home, and what exact exercises were needed to achieve that. There’s only a wet room at the Centre, so this important step to independence could be taken through our digital service in a way that couldn’t be at the Centre.
Were we meeting the right needs? The extent and type of the need had changed. Suddenly we were dealing with survivors who’d had surgeries being cancelled that they’d pinned all their hopes on. Aftercare and community care of wounds and scars wasn’t possible across all regions, despite the NHS teams’ best efforts to work around the restrictions and lockdowns. Survivors were phoning us with emergency situations. Could we change how we worked to match these, whilst still being true to our vision and strategic aims? Yes! One example of this, was that over video call, our burns physio delivered training sessions to community carers who’d never worked with burns before. They were in rural Lancashire, and a Devon ‘cottage’ hospital team, who were doing daily visits with one of the survivors on our ‘tele-rehabilitation’ programme.
Impact: It was tempting, with so little time available, to focus purely on delivering burns physio, counselling, and psycho-social well-being activities rather than what felt like the less urgent work measuring outcomes to understand impact. But we knew that we had to get more than just the verbal feedback about the positive outcomes survivors were experiencing to shape care. So we carved time to collate and analyse patient observed measures of POSAS, CARe, the Brisbane Scar Scale and EQ5. We would have struggled to make this a reality without our skilled senior volunteer Richard, who has now become a part-time team member as Impact Lead. We would recommend that if you are small too, that you consider tasking someone with the project of analysing outcomes, if it isn’t already imbedded in how you start new services and activities. We would have been floored by the amount of time and expertise needed without someone focussing on it specifically.
Challenges: It has been tough to keep carving the time to conduct impact measure assessments, and we are behind on the more recent patients. Unfortunately, we did lose a member of the team, one of our physios at the Centre which was connected to them not be being motivated by delivering physio without being there in person. Although ultimately digital care has meant that we’ve made a leap in opening out access to those (for example, who couldn’t have given up caring duties to come to a live-in centre), we are aware that not everyone has tablets or laptops and broadband to connect easily. A huge benefit has been seeing people’s home environments and being able to deliver more organic family support. It has been a constant challenge juggling paying contracted costs for the Centre, whilst not knowing when we could re-open, nor getting the benefit of utilising it. We attempted a re-open in October, but immediately our key team member got ‘pinged’ to go into isolation, and so we realised our staffing model couldn’t deliver the consistency and reliability of service the survivors needed. Scar management has been the main sacrifice in the service, which we aim to solve in 2022.
Conclusion: Clear clinically significant improvements in mental and physical health and well-being through digital, made us redouble our efforts to make this new service not just a ‘filler’ over covid times, but the bread and butter of our services to survivors. Our success in delivering rehabilitation to over 60 people during the pandemic period, is something we are so proud of. Our next challenge is to make sure that our in-person service isn’t “on-mute” for any longer than is necessary and that we are up-to-date in our understanding of what rehabilitation and tele-rehabilitation is available from NHS burns teams in post (we hope?) covid times.