‘Charity has a long and proud history. Today we regard charity and the broader voluntary sector as crucial to the functioning of a democratic system.’
Sir Stephen Bubb, Director, Charity Futures

Patient support groups (PSGs) have long played a vital role in supporting patients to better understand and live with their health conditions. We asked endocrine-related PSGs who work with the Society for Endocrinology, including the ones we represent, how they have adapted to respond to patients’ evolving needs and what their priorities may be in the wake of COVID-19.

A LONG HISTORY

The UK’s oldest surviving charity is the King’s School in Canterbury, an Anglican school set up in the year 597 by St Augustine. Indeed, the act of charity has its basis in most centuries-old religions. Yet today, the breadth of charitable purposes reaches far beyond religion, though still with the same aim of helping others in need. This is nowhere more evident than in the health arena where, even before the Middle Ages, hospitals were built using charitable donations. With the advent of the Government-funded NHS, and patients subsequently developing a more equal voice in their care and management, charities became more focused on individual patients and diseases. This gave birth to the era of the modern PSG.

PSGs in the field of endocrinology in the UK are some of the finest examples of health-related, non-profit organisations, despite many being classed as small charities and still being run entirely by volunteers. All groups provide patient information literature and support patients through events and conferences, with some also offering helplines, advocacy services and research funding. There is no better example of how PSGs can effectively adapt and mobilise to address the changing needs of patients than their responses to the COVID-19 pandemic.

SHARING, CARING AND WORKING TOGETHER

Our shared goal of supporting patients means endocrine PSGs have a long history of working well with one another. The response to the pandemic highlighted this generosity of spirit, as groups shared resources and ideas about how to adapt to the challenges. For example, the Addison’s Disease Self-Help Group (ADSHG) embraced opportunities for collaboration by running a survey with other PSGs regarding COVID-19 and adrenal insufficiency.

"We’ve taken a collaborative approach to support the healthcare profession, the learned societies, umbrella organisations and PSGs in the development of resources and guidance for people with Addison’s disease and, in the process, have formed partnerships that we hope will last way beyond the pandemic." ADSHG

COVID-19 highlighted the value of the groups’ partnerships with medical advisors. Many were instrumental in supporting the production of new resources at speed and helped answer the influx of queries that PSGs received from concerned patients about the pandemic.

Professor Simon Pearce (Newcastle upon Tyne), who advises the British Thyroid Foundation (BTF), said this approach was valuable for patients and healthcare professionals alike.

"In those uncertain weeks at the beginning of the COVID-19 pandemic, it was immensely helpful to be able to direct many of my patients with anxieties about having an autoimmune disease or taking carbimazole to the authoritative advice on [the BTF] website and social media feeds. It feels more important than ever for us to work synergistically with patient groups." Simon Pearce

Even outside COVID-19, there was, and is, plenty of co-operation between organisations and their members, societies and individual health professionals. The ADSHG and its members were involved in the development of the new Steroid Emergency Card, the BTF recently collaborated with the Royal National Institute of Blind People (RNIB) to update and review its patient factsheet about thyroid eye disease, and the Association for Multiple Endocrine Neoplasia Disorders (AMEND) has provided feedback to the European Society of Endocrinology on patient group engagement.

It is notable that all our organisations either engage as Patient and Public Involvement representatives in research projects themselves or can aid recruitment of specific patient communities to do so.

MEETING PATIENTS’ CHANGING NEEDS

PSGs were swift to adopt or expand virtual working, embracing the flexibility of platforms such as Zoom to help maintain normal services for our communities during the COVID-19 pandemic. This move to a digital format has enabled many PSGs to expand their reach by removing the physical and cost barriers of meeting up in person. It has also allowed geographically distanced groups of patients to meet online at this socially distanced time.

In many cases, the change to working virtually will live on after the immediate impact of COVID-19, as an efficient and inexpensive way to engage with and support a wider audience.

"The introduction of virtual groups has been a big change for us – and one that will live on long after the pandemic has ended. Our two-day conference went virtual … and we noticed an increase in demand for information – our Facebook groups have grown considerably, and our website is getting twice the hits it was before." Child Growth Foundation

"[Due to virtual working we] are able to attend more case meetings, tribunals and court cases as there is no travelling." Prader-Willi Syndrome Association

In addition to providing support and reassurance, PSGs have continued their vital role in listening to patients’ experiences and concerns and feeding these back to the clinicians who care for them. AMEND were among several PSGs who set up surveys to consult with their communities about their experiences during the pandemic.

"We continue to gather information from people with MEN who have had COVID, with results regularly updated and shared publicly. In addition, we run an occasional survey on the emotional impact of COVID-19 on those with MEN." AMEND

Most PSGs have received more engagement from the public during the pandemic, which often translated into higher demand for services. COVID-19 has certainly helped many PSGs to increase their reach. This has been driven by patients’ appetite for more information about their health conditions and the potential impact of the virus on them. Patients have also turned to PSGs when access to NHS care has been more limited.

CHALLENGES

For the majority of PSGs, the increased engagement and workload have been a challenge. In some instances, staff had to be furloughed, and many volunteers were unable to carry out their roles, often due to their own health concerns.

"We had to furlough staff, so demand has increased, so my workload has increased." Turner Syndrome Support Society

"We maintained and actually increased our helpline service (with no extra staff) – taking on triaging of calls for specialist centres/clinics where clinical nurse specialists were redeployed." Neuroendocrine Cancer UK

Endocrine-related PSGs are possibly some of the best supported groups in terms of medical volunteers and society funding. The Society for Endocrinology offers a biennial project grant scheme and conference travel support, a Facebook group for patient group leaders, and no end of members volunteer as trustees and medical advisors. This valuable support is appreciated.

"Thanks to our Patient Support Grant from the Society for Endocrinology, we managed to launch a new group for phaeochromocytoma and paraganglioma syndromes with a new identity, website, patient literature resources and social media channels, all in the middle of a pandemic!" AMEND

Nevertheless, some of the biggest challenges faced by PSGs during the pandemic have been finding ways to maintain regular income in the face of increased competition for grants and the cancellation of major annual fundraising events.

"More people are competing for grants, so we face stiff competition." Brittle Bone Society

Additionally, almost all PSGs struggle to find the right staff and to recruit volunteers, who are vital to the services we provide, even without a pandemic.

"Our biggest challenge is staffing to do everything we want to do. Projects regularly get deferred due to lack of time." Anon

LOOKING AHEAD

The future for PSGs will depend on remaining focused on our ethos and shared goals. We must meet the challenges of more digital times, whilst ensuring that those members of our communities who are less digitally able have equal access to resources and support.

Ultimately, our future will be about reducing the negative impact of the changes that COVID-19 has brought about, such as less face-to-face care and longer waiting lists. It is also about harnessing the many positives, which include opportunities for new ways of delivering care and support, using technologies for efficient working and to benefit patients, and making the most of the louder voice the pandemic has given us.

"[Success will mean] providing holistic, inclusive support services, utilising the best of digital and more traditional communications methods to reach even more people…" The Pituitary Foundation

Finally, it is safe to say that we have all missed the face-to-face contact of conferences, and we are very much looking forward to seeing everyone again at SfE BES 2021 in Edinburgh!

JO GREY
Association for Multiple Endocrine Neoplasia Disorders

JULIA PRIESTLEY and ANNA WOOLLVEN
British Thyroid Foundation

WITH THANKS TO:
Addison’s Disease Self-Help Group
Alex, the Leukodystrophy Charity
Association for Multiple Endocrine Neoplasia Disorders
British Thyroid Foundation
Brittle Bone Society
Butterfly Thyroid Cancer Trust
CAH Support Group
Child Growth Foundation
Haemochromatosis UK
Klinefelter’s Syndrome Association UK
Neuroendocrine Cancer UK
Parathyroid UK
The Pituitary Foundation
Prader-Willi Syndrome Association UK
Thyroid Eye Disease Charitable Trust
Turner Syndrome Support Society