AUKCAR PPI update

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I still pinch myself as I can’t believe I am involved in such a fantastic research centre. AUKCAR is a unique virtual centre incorporating 13 institutes which all have teams of dedicated researchers wanting to make the lives of people with asthma better by addressing three key areas: encourage good asthma control, maximise treatment benefits, and reduce asthma exacerbations and asthma deaths. Something which is desperately needed as every day there will be someone somewhere in the UK dealing with the consequences of a loved one dying from an asthma attack.

Since the start of my involvement in AUKCAR I have done things and been involved in things I would never have even dreamt about. By the end of this year (or perhaps January depending on whether it is Dec or Jan issue) I will have had an article published in the British Medical Journal, I will have been to 2 annual scientific meetings for AUKCAR, I have commented on a variety of different things, attended focus groups, sat on patient advisory panels, been part of the PhD reviewing team, spoken to PhD students via a webinar to give them the full story of what living with asthma is really like, but for me there are two things I am particularly proud of, firstly being invited to join the Centre Management Committee (CMC) for AUKCAR and secondly is to be part of setting up the Children and Young Persons group.

Back when I was first asked about joining AUKCAR’s PPI Group I was ecstatic about the opportunity to be involved in such a group breaking centre. I fell into it and had absolute no idea where it would take me- all I knew at the start was that I could do as much or as little as I wanted. It turned out I love doing all of the different tasks we get asked to do so find over the last year and a half I have done quite a few things!! As emails came through I would read things and comment and find the different projects so fascinating that it was really no chore to spend some time putting comments together for the researchers.

From the outset of joining AUKCAR I knew I would be involved in helping with the children and young peoples (CYP) side of things and trying to build PPI for the CYP group. When it started out I really didnt know what I was doing but in time we (myself, a research fellow from AUKCAR and an asthma nurse specialist at the RHSC in Edinburgh) got a group of children and young people and have had several meetings where they have all been so enthusiastic and we have done a few bits of PPI but our first big PPI task will be in the next meeting where a researcher is coming to speak to them and get their feedback. The enjoyment you see them having is great and they have so much enthusiasm that often we don’t get through what was planned as they have so many ideas and there is much discussion. We were worried at the start about how to get children involved and if they would get bored but it has been quite the opposite. It is really exciting. Even more so now that there is a group name and logo designed which will be launched soon!!!

Earlier this week I went to my first CMC meeting for AUKCAR. I never dreamt I would ever be part of this, it never really registered with me what the CMC was when I was at my first scientific meeting in Oxford last year. But now having been invited to be part of it I think it is a big deal. To me it is a big deal. It means being part of the team that manage the centre. I was sitting in a room with what can only be described as some the best asthma researchers in the world. I really didnt know what to expect. I have met all of them several times before and all of them are lovely but when asked my opinions on something I was kind of shocked as to me these are the guys who do all this research and understand all these statistics etc that fly around yet they were asking for my views, initially I was thinking I only have asthma what do they want to know from me, but as the meeting went on it was so clear to see how much the centre value the input from the “people who just have asthma” and see it as far more than that. Their research is shaped around what the needs of people with asthma are which is what makes the centre so unique. Patient and Public Involvement (PPI) is embedded in all the research they do from PhD researchers, early career researchers to the researchers at the top of their field. No research is exempt from PPI. The meeting was a really good experience even if the statistics and data parts went totally over my head. I am really excited and looking forward to the next few months with the annual scientific meeting, going to the FARR Frontiers meeting thing and another CYP Group so lots going on.

Guest Blog from fellow brittle asthmatic BeckyG

Continuing with my guest blogs Becky has very kindly agreed to write a wee bit about her experience with brittle asthma but also what she has done for Asthma UK as a result of it. I have known Becky for a number of years but have only met once and that was in the respiratory ward up here. I hope we can meet again soon and maybe our paths will cross in the work we are both now doing. I hope you all enjoy reading her views and if you would like to read more from Becky have a look at her blog

Hello folks. My name’s Becky, and I’ve been asked if I would write a guest post for Olivia’s blog, so here I am. I have a very severe form of asthma called chronic severe brittle asthma, which basically means that I have chronic asthma symptoms that are severe, have very severe attacks, and that attacks can come on extremely quickly – going from a state of being fine to being in a life-threatening situation within five minutes. Thankfully, this is an unusual form of asthma, but for those of us who have it, it has a major impact on every aspect of life and is disabling. However, I’m not here to say how miserable life can be, or how difficult it is to live with a disabling chronic illness. Instead, I want to tell you about a great opportunity I’ve just been granted.

I often get frustrated that the severity of my asthma, and the constant interruption of life with illness and hospital admissions, mean that I’m unable to work. Over the years I have kept myself busy and my brain working by doing a degree with the Open University and then an MA at my local university, but since completing both of these successfully I’ve felt a little at a loose end. I’ve always wanted to make a difference to the world, even if that’s just a little scrap of something in the life of one person, but I’ve found it difficult to do that with the limitations that my asthma imposes on me.

I have had contact with the charity Asthma UK for quite a number of years now, initially for support when I was feeling like the only person in the world with chronic severe brittle asthma. The support I had from others on the online forum and also from the asthma nurse specialists on their telephone helpline was fantastic, and I wanted to find a way to give something back to Asthma UK (AUK). I signed up to get involved with their publicity, promoting the work they do including asthma awareness, and as a result I’ve now appeared on local radio and on local TV news three times talking about my experience of asthma and the impact it has on my life. AUK then approached me about getting involved in their fundraising campaign of the time. Everyone knows about fundraising for charities, and it is absolutely vital that every charity has enough money to continue with the work they do, so I agreed. They used the story of my asthma experience, and bits from my own blog, to produce a leaflet that was sent to thousands of homes throughout the country, and much to my surprise we raised over £15,000 in three months!

It felt great to be part of something so successful for such a fantastic cause – to make a difference – but I wanted to do something more. It feels good that the horrendous experiences I’ve had with my asthma have had some good come out of them, but it’s not enough good, and while the difference that the money raised will make is excellent, I’ve felt like there should surely be more I could do.

I recently received an email from Asthma UK in which they were advertising for lay reviewer applications. I had done a dummy run at lay reviewing at an AUK training day in April so knew what was involved, and knew that I’d find it interesting and satisfying. Not knowing what to say other than, ‘Please give me the position because I want it and will enjoy it, and it’ll make me feel useful,’ I left my application until two days before the deadline, and was then just as stuck as to what to say as I had been three weeks previously. I did eventually come up with a fairly decent application, sent it off, and waited, but not for long, because the day after the deadline I received an email saying that my application had been great (!) and I’d been shortlisted for interview. The telephone interview took place just a week after I’d sent in my application, and much to my surprise, a week after the interview I received another email to say that my application had been successful! I was, and am, delighted and excited! So what is a lay reviewer? Well, it’s a voluntary role for non-professionals i.e. lay people, who sit on a panel with other lay reviewers, medical professionals, and scientists. One of the things that Asthma UK does is fund research into the treatment and/or management of asthma. Consequently they are often approached by researchers asking for their work to be funded, so AUK needs a good way to sift through all these applications and decide which will assist the development of asthma treatment and management, and which are relevant to people with asthma. Medics, of course, have their own ideas of what is relevant, and yes, they are informed ideas, but they are not from the position of someone with the disease. That is where lay reviewers can play a particular role – giving input from the position of someone living with, or caring for someone living with, asthma. There are particular criteria that have to be fulfilled, and a rigorous system for assessing those criteria, and once each individual on the panel (lay reviewers and professionals) has assessed each research proposal put to them, everyone on the panel comes together as a whole to discuss them. Eventually a joint decision is made as to which research proposals are granted funding, while others may need adapting, or have aspects that need clarifying, before they can go through the whole process again. Others, of course, may just be dismissed. So, as you can see, the lay reviewer plays an important role in making some big decisions – the future of developments in asthma treatment and management. It is a voluntary position for a three year term, and it feels great that finally my experience of the most severe form of asthma is going to have some positive impact. I’m also looking forward to using my brain again, using it for something interesting and important, and for making a difference.