Wellness

Finding ‘Community’: Patient advocacy and carer support groups

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What does ‘community’ mean to you – and where do you usually find it? Especially now, when so much has changed. For some, it’s connection and a sense of trust. For others, acceptance and belonging. Whatever your view, the experts agree: feeling part of a group with shared values and hopes is key to the joy we find in life.

That’s why ‘Connect’ is the first of the ‘Five Ways to Wellbeing’ – followed by Be Active, Take Notice, Learn and Give. Not heard of them? Based on global, evidence-based research by the New Economics Foundation, they are five approaches known to build a strong foundation for human wellbeing – whatever our culture, ability or age.

So the communities we’re part of really matter – and connecting in real-time, with real people, keeps us well. But when you’re someone with a life-changing or life-limiting condition, or their parent/caregiver, living through a pandemic, how do you ‘connect’ with others? How do you find ‘someone like me’?

The major charities and organisations for your condition or situation are a good place to start. Their information is accurate, while many provide expert resources and helplines dealing especially with the issues created by COVID. In the UK, this includes https://www.raredisease.org.uk  – the national campaign for people with rare diseases and all who support them. Its COVID-19 Information Hub can help with the challenges of self-isolating and social distancing.

The Carers Trust works for and with the country’s seven million unpaid carers. Its offer includes the provision of replacement care, information and emotional support.

What about social media? Online patient networks are useful for sharing experiences and learning what’s new; the best give patients a voice and empower them to make better-informed decisions. With more than 750,000 members tracking 2,900 conditions, PatientsLikeMe is the world’s largest personalised health network. It helps people ‘heal together, get answers and take charge’. As it says, ‘Here, no one goes it alone’.

Patient Power provides another respected online network. Co-founded by Andrew Schorr – a medical journalist, patient education pioneer and two-time cancer survivor – Patient Power’s mantra is Knowledge, Confidence and Hope. Focused on cancer, it works to enable patients to understand their diagnosis, seek the best specialists, get second (and even third) opinions on medical approaches, and – if appropriate – consider participating in a clinical trial.

And what if you’re already in a clinical trial? Speaking during our webinar in February 2020 on the role of the informed patient, Andrew Schorr said that patients should be treated as ‘investors’ in their own clinical trials, who put in their time and hope. Patient Advocacy Groups (PAGs) are one channel through which this shift in approach is already happening – encouraging communication, influence and a sense of connection to flow both ways.

The fact that PAGs are often run by people directly affected by the disease makes them uniquely placed to create communities that share information, insight and practical support alongside their advocacy work. Find a Cure is a UK charity that works directly with patient support groups.

At mdgroup, connecting with PAGs and patient associations – virtually, for now – reflects our commitment to putting patients first. As Valeria Nicoli-Carr, our Vice President of Patient Engagement, explains, hearing directly from patients and caregivers about the experience of living with a specific condition “helps us understand what we can do to make their journey better”. Pre-pandemic, events organised by PAGs showed that living with a diagnosis doesn’t have to mean losing your sense of belonging, she says: “A rare disease can bring families and communities together too.”