In the second part of a two-part blog for our special series on living with long-term conditions, Brian Devlin, Ceri Dare, Genna White and Olivia Fulton, the four Cochrane UK Consumer Champions, and Emma Doble, Cochrane UK’s Patient and Consumer Coordinator, reflect on making treatment decisions, what they want healthcare professionals to know, and what they would tell their younger selves. Featured image: ‘Stolen moments – When Skies are Grey’ by Shanali Perera* (Read part one of their blog).
About Brian, Ceri, Emma, Genna, and Olivia
Brian Devlin – I am profoundly deaf. I manage well with bilateral Bone Anchored Hearing Aids. Three years ago, I had a stoma as a consequence of decades of fistula and abscesses. I am a retired NHS Director of Public Relations and have an academic background which includes healthcare ethics.
Ceri Dare – I have a long history of mental health problems, with a diagnosis of schizoaffective disorder. A few years ago, I developed adult-onset difficult asthma. Trying to juggle meds and treatment for both is surprisingly difficult. I enjoy running, crafts, and roleplaying games.
Emma Doble – I was diagnosed with Type 1 diabetes at the age of 4. I am a consumer engagement coordinator at Cochrane UK working on the consumer champions project and I am also a patient editor at the BMJ.
Genna White – I am a parent of a child with a developmental communication disorder, a final year speech and language therapy student and a Cochrane UK Consumer Champion.
Olivia Fulton – I have lived with severe asthma all my life. Since asthma started to dictate more of my life, I have become involved heavily with patient and public involvement (PPI) in research, specifically asthma or critical care research as well as teaching PPI. I am also a patient advocate for people with severe asthma and help run an Intensive Care Unit (ICU) support group for people post ICU.
Living with long-term conditions may involve making many treatment decisions. What has helped you with this, or what was missing that you might have found helpful?
Emma – When I was exploring the decision to move from injections to an insulin pump I found speaking to other people with pumps really helpful. I also had lots of open discussions with my health professionals about the pros and cons. Other patient advocates who had shared their experience of switching to an insulin pump on YouTube, in blogs and on social media were a great source of information and support for me as well.
Genna – I ask for information and advice from anyone that I can think of! I always worry that I will have missed something, so asking other people for their input helps me to feel like I’m being thorough and making informed decisions on my son’s behalf. Being part of an understanding community of peers and professionals has also made a big difference to our whole family.
Ceri – Managing physical health in the context of severe mental illness can be challenging. I’m not always allowed to make my own decisions. In hospital, staff rarely treat me as an equal or value what I bring to a treatment discussion, whether that’s a Cochrane Review or my own experience. Out of hospital, I have to muddle through on my own. Access to information is critical and academic journal paywalls the biggest barrier.
Brian – As the others have said, I’ve kept on asking for advice from patient groups as well as clinicians. Stoma awareness is very high on my Twitter community (@BDevlin1). Like many other long-term conditions, stoma issues have a lot of stigma associated with them. ‘Outing’ myself as a stoma user, and celebrating the fact that a stoma has transformed my quality of life has opened up a whole world of different products and treatment choices for me.
Olivia – I found it hard to get information about severe asthma because the type I have is so rare. This is the main reason I have my blog ‘Anonymous Asthma’ and am a patient advocate. I never used to be involved in the decisions about my condition because of the lack of information. With more knowledge from the online community, I can now take part in decisions about my care.
What is your experience of being involved in research and what would you say to others thinking about getting involved?
Emma – I have taken part in research as a participant and as a patient advisor to projects. I have always enjoyed getting involved in research and find it a great way to learn more about my condition. It has also helped me accept my diabetes and talk about my diabetes with others. I would encourage others to get involved in research particularly in informing and guiding research on topics that are important to them.
Genna – I have contributed to other people’s research and have started to carry out my own projects. I think it’s really important for research to be meaningful and functional to the people whose day to day lives it concerns. I would definitely encourage people to get involved in research – only you know what it’s like to live with your condition.
Ceri – Participation in research has been life-changing for me. Through working as a co-researcher, I gained the confidence to do a Master’s degree and to get into employment, which never seemed possible for me before.
Brian – I am hugely keen on getting involved in research. I’ve taken part in trials, DELPHIs and focus groups. I’m part of a group of patients who designed, wrote and analysed a truly patient-led piece of research about how people with stomas want more openness and discussion with their specialist nurses and consultants about the impact of surgery on their sex lives. It’s been a fascinating voyage of discovery where we have encountered some interesting practical and ethical issues.
Olivia – Being involved in research has changed a negative situation into a positive one for me. It has given me a purpose in my life. I feel like I am helping researchers make the best studies possible. Anyone wanting to get involved can jump in. Ask other patients who are involved what it is like and how you go about doing it. The best thing is the people you meet and the opportunities you get.
What do you most want healthcare professionals supporting people with long-term conditions to know?
Emma – It is hard work and even when you try to do everything right, things can go wrong. The hardest part of living with Type 1 Diabetes is that it is there every day and although you learn more about the condition it doesn’t get easier. Feeling supported to let diabetes take a back seat occasionally and to find that balance of good diabetes management whilst also being able to live a normal life is important.
Genna – It’s really hard work! It affects so many different parts of your life, you never get a day off and you invariably have to fight to get the support you need.
Ceri – I’m spending a lot of time managing my condition. It would be nice if I didn’t have to put even more time and effort into managing my interaction with health services, accessing useful support, chasing up referrals, and so on. You can add to that burden, or you can be on my side in dealing with it.
Brian – There is an understanding in many long-term condition communities, including mine, that there’s a real role for ‘Experts by Experience’, different, important, expertise from that of healthcare professionals. I’d also remind healthcare professionals that patients read what they say on social media. Jokey asides about, say being disgusted by stoma bags, will sting and hurt people whose life can already be a bit of a struggle. Be kind. Especially when your communication is in public.
Olivia – We are people too and want to live our lives, if professionals can ask their patients about what is important to them, then try and work their medication or treatment plan around it to optimise both quality of life and condition management. Just speak to patients, get to know them as people, not their condition. Also not to make judgements when we don’t get everything right or get unwell. We try our best.
If you could go back and speak to yourself at the beginning of your journey, what would you say?
Emma – Don’t put too much pressure on yourself to achieve perfect diabetes control. Connect with others who have Type 1 Diabetes. Don’t be afraid to make mistakes.
Genna – You’re doing everything you can!
Ceri – Life won’t be what you wanted, but it will be good.
Brian – I’d say what someone else said about stomas. It’s not just a bag for life, it’s a bag for living. My condition helps to shape me. But it doesn’t define me.
Olivia – Speak up for yourself and don’t be ashamed of wanting to live your life. You will forget to take medication some days and that is ok. It is also ok to have asthma attacks. It doesn’t mean you have failed. Be kind to yourself.
Brian, Ceri, Genna, Olivia and Emma have nothing to disclose.
Find out which research studies you can be involved in and how you can take part in research by visiting the Be Part of Research website.
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*Shanali Perera is a contemporary artist, educator, activist, retired Rheumatologist, living with Vasculitis. She works across the intersections of art, health, medical education and patient support: https://www.changinglanes.me/