The New Age of Advocacy
As part of our weekly Health Insider series, MS Society’s Head of Campaigns and External Relations Jonathan Blades and JDRF’s UK Head of External Affairs Michael Connellan explore the changing advocacy landscape during the COVID-19 pandemic, looking at the opportunity for novel digital and tech solution, fundraising, and the importance of charity-supporter ‘reciprocity’.
As the COVID-19 pandemic continues, these naturally remain uncertain times for patient groups and the charity sector. Charities are seeing drops in income and funding while, at the same time, surges in demand and ‘need’ from the communities they serve are placing huge pressures on resources.
Alongside MHP’s new Senior Director Alison Dunlop, I recently wrote about some of these challenges, and the role for industry to consider playing, here. For this week’s Health Insider we are thrilled to have two guest contributions from the patient advocacy community.
Jonathan Blades, Head of Campaigns and External Relations with the MS Society, has shared his own reflections on the challenges facing those with multiple sclerosis and how the MS Society is adapting through novel digital and tech solutions.
And, while we know fundraising is expected to be a challenge for charities during this period, our second contribution comes from Michael Connellan, UK Head of External Affairs for JDRF; writing about their new #JDRFCovid19Appeal and the ‘reciprocity’ which lies at the heart of the charity-supporter relationship.
Finally, Alison brings this edition to a close by sharing her views on the impact of the pandemic in making charities ‘fit for future’.
Head of Campaigns and External Relations
Responding to a ‘new’ demand for suppOrt and services
Charities are facing unprecedented demand for services, within an external environment that has driven us to redesign how we support our communities. Many within our communities are relying on us to provide up to date information, create connections and offer practical support in new ways.
COVID-19 is having a huge impact on disabled people, like those with MS. We know one in three people with MS say their mental health has suffered and one in four report feeling ‘scared’.
Calls to our free MS Helpline have increased significantly along with visits to our online health information. We’re seeing more people engage with our online physical activity classes and blogs and videos on managing MS symptoms. Since we can no longer meet face-to-face, we’ve been rapidly creating new services – including telephone befriending and virtual meet ups – so people can stay in touch from home. Within weeks we launched our #NeverAlone campaign to ensure our services reach all those in need.
While we still don’t know what the other side of COVID-19 looks like, we do know that the way charities support people has fundamentally changed. Many were already working to better incorporate technology and innovation but COVID-19 has been a catalyst to drive action.
Transformation through technology is not being driven from central offices alone. Local patient groups, who would have met in person, are holding zoom meetings and virtual fundraisers. We are seeing more using social media to create connections and seek out information. Patients are becoming more digitally active and familiar with virtual appointments and accessing support online. We could be seeing a bottom-up tech revolution – not only in services but patients’ expectations.
However, all of these challenges are set against a backdrop of charities facing significant reduction in income. For many, the third sector is their first port of call and a reduced sector risks the opportunity to embed technology and innovations in the patient experience and a tech revolution lost.
UK Head of External Affairs
Adapting to protect type 1 diabetes research
JDRF’s mission is to find new type 1 diabetes treatments and cures via research – and this mission continues through the coronavirus crisis. But spring and summer is when most of our outdoor fundraising should take place. Our supporters come together to run, cycle, hike mountains, and heroically tackle obstacle courses in fancy dress. The postponement of these events will have a significant impact on our income – and it’s unlikely Government support for non-profits will cover medical research charities.
Our #JDRFCovid19Appeal has been launched to help us come through the crisis on a stronger footing. We’re communicating the message that while our type 1 diabetes research programme is adapting to lockdown and social distancing, it is not stopping. We are sharing stories of world-leading researchers who are continuing trials via contactless sample collection pick-ups on participants’ front lawns.
To help give our appeal the best chance of success, we’re working to protect the reciprocity that lies at the heart of every charity-supporter relationship. Our community has been asking us how to interpret Government advice on whether they’re more at risk of COVID-19; how people with a chronic condition like type 1 diabetes should adapt in terms of social distancing versus isolation measures; and what action they should take if they contract the virus. We’ve been working to provide answers.
Type 1 diabetes demands multiple daily blood glucose checks. Many people with the condition rely on wearable medical technology to do this. It’s therefore one of the most digitally knowledgeable patient communities in the UK. JDRF has been calling for improvements to medtech access. What new opportunities could emerge thanks to the NHS’s spectacular digital transformation across the last four weeks? What crisis-inspired changes to regulatory frameworks on treatment and tech provision could change lives for those with type 1 diabetes? We intend to find out.
Looking to the future
Before COVID-19, there were questions raised regarding the charity sector’s ability to change, leaving some patient groups considered not ‘fit for future’. But, the evidence over recent weeks has proved quite the contrary. The drastic and rapid change in patient services during the pandemic has proved a significant step forward in future proofing support for patient communities.
The emphasis for patient groups right now is on survival and serving their patient community as best they can. As is evident from the commentary provided by our guest contributors, charities are having to diversify and prioritise services to identify the most efficient way to address changing needs. Embracing new technology and digital services over recent weeks has led to a remarkable digital transformation across the sector, allowing communities to stay connected and to access essential services.
As we move through this pandemic, inevitably there has to be one eye firmly fixed on the unchartered landscape that awaits on the other side.
With A&E admissions and referrals for urgent hospital appointments significantly falling, the immediate priority for patient groups post lockdown will be to help identify the thousands of late presentations of non-COVID-19 cases, ensuring diagnosis and access to treatment as quickly as possible. But, the achievements realised across the charity sector in the last four weeks will form the foundations for a new landscape – one that will better support communities moving forward. The sense of collaboration, partnership and community demonstrated in and beyond the charity arena, means that we will see a sector that is without question ‘fit for future’.