Taking control: Inspiring others to beat rare diseases

Karen Owen lives with a condition called hereditary angioedema (HAE). She has learned to take control of HAE through self-management techniques and peer support.

In 2014 she started a programme called HealthMakers to help others with long term conditions do the same, inspired by Games Makers in the 2012 Olympics. Her programme is so successful it has now been commissioned and rolled out across East Berkshire via Berkshire Healthcare NHS Foundation Trust. She told us her story.

I have lived with hereditary angioedema (HAE) all my life. It’s an episodic condition which means that I don’t produce enough of a blood protein called C1 inhibitor. As a result you get swelling from trauma, stress, infection or hormonal triggers. This can be anything from a mild external irritation – such as swollen hands or face – to more serious swelling of internal organs. When I had tonsillitis recently I had to go to A&E with serious swelling of the throat, for example.

I’m passionate about self-management and peer support for my condition. I didn’t meet another person living with HAE until I was 50, when I attended my first HAE UK patient conference. My ability to manage my condition changed exponentially with that support. 

The HealthMakers course we run is over six weeks and involves training people to set goals, solve problems and self-manage their condition to the best of their ability.

You tend to find there are four steps in people’s journey. First, people can be quite down, not really participating in their own health, and ‘waiting to be fixed’. Second, they have the realisation that there’s something they can do to manage it themselves, but not really knowing how. Third, there’s gaining some self-management skills and confidence, and fourth, becoming proficient at using them. Obviously, people don’t stay in any one of these steps all the time – they experience setbacks because living with long term conditions is tough. Part of the course is about dealing with those setbacks effectively and moving on again.

I’ve used self-management to reach several goals. It’s a matter of breaking them down. On the first course I delivered as a facilitator back in 2014 I set myself a goal to lose 3.5 stone. You obviously can’t do that overnight, so my initial goal for the week was to research what support there was locally. A year later, step by step, I lost the weight.

It’s inspiring to see others reaching their goals – which can be as simple as dealing with the admin at home, cleaning out that kitchen drawer, or walking to the shops instead of driving. You can see others having their ‘lightbulb moments’ which is very satisfying. It’s about taking people along, showing them the tools they can use to help themselves, and then they can pick and choose which ones they use.

It’s crucial that goals are realistic and we keep nudging people to recognise if they aren’t. For example, if you’ve said your goal is to run ten miles, but you haven’t walked for six weeks, we encourage people to question that and break it down. Lots of success is about what happens when people don’t reach their goals and what they do next, learning how to adapt and set the right expectations.

I strongly feel that patient voice is needed in the NHS and in the pharmaceutical industry. There can be a very paternalistic view of patients – as people ‘to be done to’. There’s a big difference between ‘suffering from’ and ‘living with’ a condition. We need to create empowered, resourceful and resilient people and that’s what self-management can do. Genuine peer support that is positive and trustworthy is a lifeline that keeps you able to look after yourself. We only get to see health professionals for about 5 days a year so that’s 360 we are on our own. Having these skills saves the NHS a fortune in preventing trips to GPs and A&E. It also encourages many to go on and volunteer to support others, building healthier communities.

That’s why I’m passionate about helping those with a rare condition, or any condition, understand the importance of self-management and peer support – they have made a life-changing difference to me. I hope that my programme will be taken wider and the advocacy and volunteer work I carry out continues to make a difference.

Karen is a Changemaker in Takeda’s I am Number 17 campaign on rare diseases. She is also featured in the book The Patient Revolution: How We Can Heal the Healthcare System. It gives real-life stories of ordinary people affected by life-changing illnesses, disabilities, or conditions, who have all gone on to help change the healthcare system in inspiring ways.

Find out more about Berkshire’s HealthMakers courses or contact healthmakers@berkshire.nhs.uk  

Twitter and Facebook: @HealthMakersUK