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Norman describes his incredible journey from growing up in Africa with psoriatic arthritis to becoming a Patient Partner Lead in Sussex – overcoming numerous personal challenges along the way.

Enabling patients to be partners in their care is life changing.

Growing up in an isolated part of tropical Africa, medical care was sparse. I’ve lived, since childhood, with psoriatic arthritis, which has progressed to rheumatoid arthritis, enthesitis and other complications of chronic inflammation. My father died when I was 10 years old, and my mother, a teacher, instilled in my brother and me that we should make the most of what we had while helping those less fortunate.

Trained as a nurse, I worked for an award-winning, innovative ostomy and wound care device manufacturer, delivering ground-breaking services across Sub-Saharan Africa and the Indian Sub-Continent, before moving into charity fundraising and marketing full-time.

Then came a move back to the UK and rebuilding careers for my wife and me. Unrecognised qualifications, no local job market experience, finding schools for our children and housing costs all added to the challenges. That resolute philosophy of making the best of what we had was what saw us through. We were soon involved in youth clubs for our children, community affairs and immersing ourselves in discovering the beauty that lay on our doorstep in a Sussex market town.

I hadn’t relocated my family halfway across the world for a life on benefits.

Shared Decision Making 

Twenty years ago, my rheumatologist suggested, during a Shared Decision-Making conversation, yes, all those years ago, that I may need to give up work. The London commute proved too hazardous for me with my cocktail of immunosuppressant drugs. That news was devastating. I hadn’t relocated my family halfway across the world for a life on benefits. I was just 44 years old.

My determination kicked in, and I continued commuting for another ten years, travelling to and from London three days each week by black cab with a driver who lived nearby. I like to think of myself as an early pioneer of Work from Home on the remaining days of the week. I kept my financial independence and, along with my wife, also a teacher, educated our family, paid the mortgage and continued to work for a better future for our local community.

Confidence to Continue

Enabling patients to be partners in their care is life changing. This and a supportive employer gave me the confidence to continue working through those most challenging times. In addition, with some financial support from Access to Work,  I could provide a small income for my regular cab driver during the tough years of the Financial Crash. For him and me, it was a win-win.

In addition to my work, I was busy as a London and South-East chair for Arthritis Care (now Versus Arthritis)  a school governor, and a member of the Patient and Public Design Panel for the new Brighton hospital. Then an opportunity came from the new Horsham and Mid Sussex Clinical Commissioning Group. They were looking for Patient Representatives, so I applied and joined in meetings scrutinising the new musculoskeletal contract and its delivery by Sussex MSK Partnership Central (SMSKPC).

I was attracted to the innovative ways SMSKPC delivers outstanding care. Having benefited from the care they provide; I wanted others to experience that life-changing partnership in their own lives. So, I spent seven years volunteering as a Patient Partner, working on service improvements to help patients better control their own care in partnership with clinical staff.

I will be forever grateful to my NHS rheumatologists and specialist nurses for those Shared Decision-Making conversations and care when my inflammation was at its worst. They were with me during my toughest years while I tried every new drug. I recall the first fears expressed by my rheumatologist of increased risk of certain cancers with Anti-TNF drugs. My response?

“Well, I can’t carry on as I am, so let’s carry on, and we’ll deal with those complications if they arise.” 

I’ve had excision of several skin cancers since, but I put them down to 35 years of African sunshine.

I was attracted to the innovative ways SMSKPC delivers outstanding care.

Patient Partner

Good years have followed since my inflammation was tamed. I am thankful for innovations in rheumatology drugs and physical care. With my condition under control, I’m now in a new Lead Patient Partner job share where I build relationships with service users, community groups and charities. I also support improvement work in the NHS.

The care and support I have received from the NHS will always be central to what I do. It inspires me to drive service improvements for those most vulnerable or isolated within the communities of Crawley, Horsham, Mid Sussex, Brighton and Hove.

There is much to do as we emerge from the pandemic and address the challenges of an ageing population, adult social care and the millions of people who live with pain every day. There are solutions out there – they just need to be found. My journey to becoming a partner has taught me – innovative and fleet of foot thinking will win the day!

NORMAN is Patient Partner Lead for SMSKC, where he facilitates patient inclusion and champions innovation in care services for people with musculoskeletal conditions in Sussex.

tagged in Patient Stories, Sussex MSK Partnership Central, what inspires us

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