Fifteen years ago, I was diagnosed with a lifelong chronic illness, Ulcerative Colitis (UC). I distinctly remember the consultant’s words "you will be on medication for life, and there isn’t anything you can do". Pretty scary for a 19 year old in her first year of university, studying away from home. At that point, it’s fair to say, I felt about as powerless as you could feel. Not only had I lost control of my own body, with debilitating bouts of the disease surging upon me at any moment, but I’d been told there was NOTHING I could do.

In the years since, I have worked in healthcare and navigated the system to manage my own health and wellbeing. I have been on a journey - both personal and professional - from that feeling of powerlessness. Along the way I've repeatedly asked myself - who has the power to make things better?

It was through my personal experience and subsequent desire to make things better that I started working in the public health team at an NHS Primary Care Trust (now a CCG). The goal was to improve health and wellbeing through health prevention programmes. Sounds fulfilling, but I found it less than inspiring. Decisions were taken with minimal consultation; least of all from patients, the very people who they were designed for. Instead, groups of ‘experts’ would get together and decide what they thought would work best. With some notable exceptions, it’s a top down model that is still too common today.

I saw this playing out in my own personal healthcare experiences; waiting months for appointments, no easy access to my own test results, decisions about medication taken out of my hands. It made me think - how can we more meaningfully involve people in decisions about their healthcare?

I soon left the NHS and found something that reignited my passion for working in healthcare – a digital mental health service designed to ‘empower patients to take control of their own mental healthcare’. A peer support network, available 24/7. Members were able to decide when they accessed support, where they accessed support, and possibly most importantly, what support they accessed. Patient choice was at the heart.

Whilst members of the service were reaping the benefits of being empowered to take control and access support at any time, it was harder to engage the professionals. The reaction of many clinicians to the ‘disruptive’ new technology was eye opening – primarily fear. Was this fear that the control was moving towards the patients, or simply that it was moving away from themselves?

My own experience made me think this fear, though perhaps understandable, was misplaced and unhelpful. I’d been living with UC for 8 years by this point – if I was going to get a disease ‘flare up’, I knew what medication to take and for how long, I knew how long it would take to work, I knew what side effects I would feel and discovered ways to manage them. I could even tell one or two days before any tests would be able to tell a medical professional, that a flare up was about to embark. What could be more powerful than that, both for me and the medical professionals involved in my care? The difference between getting treatment early enough to possibly prevent the effects, compared to a full flare; weeks of illness, lots of drugs and potential hospitalisation. Here knowledge is power, and the healthcare system must acknowledge that this knowledge is two way; a collaboration between expert patient and expert professional.

Work wise, I have almost come full circle – not working within the NHS, but for an NHS nationally commissioned homecare service, providing healthcare to patients in their homes. Of course, the concept is a good one, we can help the NHS deliver more flexible, accessible services and choice for patients. But we are at the mercy of our customers – most of the services I work on are designed for patients by pharmaceutical companies who own the drugs and provide the funding, with all of the limits of delivering innovation into the NHS at scale. It still feels top down.

As I reach 15 years of living with UC, the power has shifted. I’ve built a trusting relationship with my consultant, and I have a hand in my decisions; she will give me a range of treatment options and I will go away, research and select the one I think will best suit me. It is more collaborative but not truly collaborative; I’ve still no say of when/where my consultations take place, in fact I travel over an hour away for every appointment that I’ve usually waited months for. There is still no easy access to my data; recently I had a blood test done at home, the results should have been ready the next day. After two days of chasing, on the third day, I attend my scheduled GP appointment without the results. My GP was just as frustrated with the system as me — he wanted to help, but no decisions could be made about how to treat the ill effects I’d been living with lately. I went home disappointed and frustrated; another weekend of suffering to get through with no idea, no support, no plan in place.

My own personal healthcare journey has been a lot about acceptance. Acceptance that whatever you do or however much you try to help or protect yourself, there are some things you can not control and inevitably you will sometimes suffer. During those times, I have found power in focusing on the things that I can do. I have practised mindfulness and had counselling to reach this acceptance, which has helped me to feel better. It helps me to understand what is or is not in my control at any point in time, and to realise there is SOMETHING I can do.

Myself, the healthcare professional or the powers that be in NHS and pharmaceuticals will never hold all of the power. You can never have complete control over the unpredictable nature of a disease that knows no bounds, and part of having a long-term health condition is letting go of any need or desire to control. The same goes for healthcare professionals; no one entity will ever have a monopoly on power. But the more we can all learn to let go and share our knowledge, the more frequently more meaningful collaborations can be developed and better outcomes achieved.

Joanna Rota has worked across a variety of NHS and NHS-commissioned healthcare organisations. She is currently project manager for LloydsPharmacy Clinical Homecare. As someone who has lived with a long term condition for 15 years, Joanna is passionate about empowering patients to take control of their own healthcare.