Determination and ownership

For me, Choosing Wisely is not just about avoiding unnecessary interventions, but also about pushing for treatments that we might actually need. We are all the owners of our own health and often we know better than anyone when something just isn’t right.

At the age of 48 I needed a hip replacement, and no-one was sure why. Suggestions included my weight, hyper-mobility, bad luck or even my imagination (according to one sceptical doctor before I had x-rays).

It was a long process to get diagnosed with psoriatic arthritis (PsA), an autoimmune disease that causes painful joint inflammation and is linked with the skin condition psoriasis. If it’s untreated – and mine was for several years – it can cause a number of problems. In my case, not just damage in my hip joint, but also my jaw, hands, spine, knees and feet. Plus inflammation that came and went in all sorts of places: fingers and toes swelling up randomly, tendinitis spreading round my body, gastrointestinal symptoms, recurring rhinitis and tonsillitis. I was pretty miserable.

But this isn’t a tale of woe. I was determined to find out what was wrong, so I became a sort of ‘health detective’. I have a background in research and in social care, so I knew how to identify reliable sources of information, including NHS websites and clinical research. But I also joined online forums for advice, not just about what might be wrong, but also about how to get the best out of appointments with my doctors. The top tips included ‘make lists of questions so you don’t forget anything’ and ‘don’t give up.’

It was on one of these forums that someone recognised my symptoms and suggested I look up psoriatic arthritis. It was all very familiar. I took my GP a list of symptoms and suggested it could be PsA. He was fantastic, agreed it seemed possible and referred me to my local rheumatology department. When the locum there couldn’t make up his mind, he referred me without hesitation to a specialist centre for a second opinion. They confirmed PsA and started me on disease modifying anti-rheumatic drugs.

Living with a chronic illness can mean a lot of time spent at medical appointments – there are other things I’d rather be doing – so to get the best from them I need positive partnerships with my healthcare team. I need them to listen, respect what I’m saying and empower me to manage my own health as far as possible, not just prescribe me drugs or have a one way conversation. The best have been the nurse who taught me how to inject my own medication, the occupational therapist who showed me all sorts of gadgets to help my fumbling fingers, and the aqua-fit tutor at the local sports centre who plays cheesy rock ‘n’ roll and gets me smiling as well as exercising!

It’s been 18 months since my diagnosis, I am not cured, but I am much better. I still can’t walk far, but I have been kayaking, snorkelling and even quad biking! I haven’t had a day off work sick and I am healthier and happier. My own personal ‘combination therapy’ of medication, swimming, singing and a good sugar-free, vegetable rich diet is helping. What’s yours?