Robert the influencer and campaigner

Robert has lived with a chronic condition for many years and has had rheumatoid arthritis since he was 3 years old. He has been a wheelchair user for much of his life. At University Robert heard about people using transcendental meditation to help them with stress ahead of exams and thought he would give it a go.

It did far more than help with exams…three years later I came off all my medication. I had been due joint replacements around that time but no longer needed them and haven’t had any since. I have self-managed my condition since then

Soon after Robert realised other people may benefit from self-management and started volunteering. He worked with a West Lancashire group for disabled people and Arthritis Care, a national charity where he began campaigning work.

Robert as an influencer and campaigner

From his volunteer and campaigning work Robert became involved in the setup of the Coalition for Collaborative Care (C4CC).

At the beginning there were 28 people in the room all at the receiving end of the care system. All had so much to offer

C4CC are now a major influencer at a strategic level, working in partnership with NHS England and others to make health care and related supports more personalised. They are guided by the experience of people with long-term conditions and have a strong focus on coproduction.

In addition to his work with C4CC Robert voluntarily represent peoples with disabilities and chronic conditions locally, nationally and internationally. He is a patient advocate board member for 3 charities including the Healthcare Quality Improvement Partnership (HQIP); the International Foundation for Integrated Care (IFIC) and the European Forum for Good Clinical Practices (EFGCP). He also sits on the board of an organisation who support work and education options for people with disabilities.

At their (IFIC) recent conference 1500 people from around the world came together to talk about care, and patients are the central point in that

What helped?

Robert’s own personality, skills and dedication have helped him to ‘do it for himself’ and become an advocate for others.

Having got the self-management skills, I was able to transfer them over to other things

The Coalition for Collaborative Care started very locally with the Council for Voluntary Services overseeing and helping Robert and other members of the group with the set up.

Challenges

The main challenges Robert faces are physical.

Physical challenges are part of the battle. At conferences you have to ask for them to pay for a comfortable seat or a night at the hotel before the meeting. Sometimes even the NHS say they can’t pay for an overnight stay. Sometimes there are policies that say expenses can only be paid out for public transport, but I can’t just hop on a tube and sometimes I need a taxi

Robert also highlighted the challenge of funding and how it is affecting some of the groups he is involved in.

[The co-production team at the] Coalition for Collaborative Care are not funded anymore. It was about all the people with lived experience coming together and now that has ended.

Achievements and impact

Having his views being listened to and being in a position to influence positive change is an achievement for Robert and he can see the impact this has.

I’ve had the opportunity to lobby MEPs and helped to raise awareness of problems that people with arthritis might have. The doctors, doing the lobbying at the event, were really surprised when the MEPs were more interested in talking to the patient than them

The work also has a positive impact on Robert and his life.

It’s those sort of things that have given me a psychological lift. I’ve also had as much learning from this as a traditional career and I’m much more confident in all areas.

The future

Robert is currently looking around for other opportunities and avenues to be involved in since the funding has ceased at the Coalition for Collaborative Care.