AUKCAR ASM NRS Talk

It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time yet. I say this often but AUKCAR has been life saving and life changing. I have no clue what I would be doing if I had not had that chance meeting that set about a series of events which has put me where I am now.

The annual scientific meeting held in London this year was a celebration of all the hard work and research that has been done to help benefit those living with asthma or affected by asthma. Asthma UK originally funded the centre for 5 years so we had to reapply for further funding for another 5 year period. It was announced during the meeting that we have been awarded funding for the next 5 years which is incredible.

I love the ASM’s because it is a chance to meet people face to face. The centre is virtual so a lot of the work is done via email or teleconference so seeing the people you work alongside is not a common occurrence. It also gives us the chance to meet other members of the patient and public involvement (PPI) group.

 

This years meeting I was speaking twice and presented a poster too. For the first time I was presenting about an academic bit of work on my own which I was a little nervous about but once I got up there it was not too bad (also the team who were part of the work were in the audience so had to get it right). The poster was also related to the piece of work too- evaluating the impact of PPI!!!

The final talk I was giving was when I fell to pieces a little. Not quite as bad as 5 years ago when i was in tears and the audience were in tears, it was only me this time. It was the talk I gave along with 2 friends and PPI colleagues at the NHS Research Scotland Annual Conference. To summarise the talk was originally celebrating the NHS at 70 and we gave our accounts of how medicine has changed with the NHS. Allison started speaking about her experience fo asthma with her mother, then Elisabeth spoke about growing up with the NHS and then I spoke about the NHS today and changes in medications. (I am going to write a full blog post dedicated to our talk in the next week or so).

When I originally gave the talk in October I had not long changed consultant, had started new medication for my asthma and things were looking up. This is part of my original talk:

“I have been in and out of ICU and HDU more times than I can count, it has almost become routine when admitted to hospital now. Once stable I would then be moved to the ward to further stabilise before being ready to go home, once I home I would then begin the arduous task of weaning down my oral prednisolone dose to my maintenance. This I now hope is a thing of the past. I am 4 months into a trial of mepolizumab and it has had so many positive effects. I have not been admitted to hospital since April and am on the lowest dose of oral prednisolone I have been on for as long as I can remember. It has been truly life changing. Advances like this have given not just me but given others their life back. If it was not for research, mepolizumab would not be an option and I would still be on the rollercoaster I was on before”.

It was only just before I was going to give the talk at the ASM when I realised how much has changed in such a short space of time. Never would I have thought  when I first wrote that talk that life would have changed so much.

I have been back in hospital and intensive care, I have not got back down to a lower dose of prednisolone and I am no longer working. I am still on the mepolizumab injections as it has reduced my eosinophil count. It highlights just how fickle asthma can be and how you can never predict what the future will hold.

In a way I think maybe it is a good thing that when giving the talk at the ASM I was able to tell the audience what I had said back in October and then tell them how life has changed in a matter of months. No one unless you’re living with it can really see the unpredictable nature of asthma and how debilitating it can be. Even with the best plans and management it can still rip the carpet out from under your feet. The emotion I showed on stage is the emotion I try and keep buried down because as it does is remind me of what I am not able to do. PPI has given me so many positives but there is still the longing for the life you want or the life you once had.

Having a platform such as the AUKCAR ASM or the NRS gives the opportunity to show everyone what is often hidden behind closed doors when it comes to asthma. It is so misunderstood and if people who struggle to deal with controlling it don’t speak up then the perceptions of asthma will never change. I hope that some of what I do will help make a change and help researchers, Dr’s, nurses, other health care providers and the general public about asthma and what it is really like.

NHS Research Scotland Away day!

Gosh! Im getting used to being the only patient speaking at research events!!!

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Today NHS Research Scotland (NRS) held an away day in Edinburgh with a variety of researchers, research managers, R&D, members of the CSO and various others. There was also me- not a researcher, research manager or in any of the other positions that other attendees held. I was there as a patient and to give my perspective of patient and public involvement (PPI) and how it has impacted me.

As I present more and more and to larger audiences I find I am more at ease speaking at the lectern in front of a room full of people. What I have realised is that I can articulate the importance of PPI and how passionate I am about it. My passion for PPI comes from the experience I have had being involved in research and how it has changed my life. Not wanting to overuse a statement but it is I guess my catchphrase to sum up how I feel about PPI…

“the best thing is being able to share what I have been able to do in research and help researchers understand what it is like to live with uncontrolled asthma…PPI and research has really turned a negative situation into a positive one”

I feel so fortunate to be able to speak about the variety of different opportunities I have had as a result of PPI. Every piece of research is different so PPI activities that go with the research are going to be different but the aim is the same. It is about helping the researchers to get the most out of their research and making it applicable to people with that condition.

Not all researchers are receptive to the idea of PPI and working alongside patients as colleagues, but as PPI becomes more of an integral part of research and grant applications it is horrible to think that researchers who don’t like PPI are forced into doing it and then do PPI badly and this gives a really negative experience for the patients involved. As I have more experience now I feel confident in saying to researchers if it has been a bad experience but when I first started I didnt have that confidence and I don’t know what the researchers thought afterwards and would hate to think they went on as they did and give other patients a similar experience which is why I will now say if its not been good.

Speaking at events I can get across the importance of PPI to not only researchers but also to the patients involved and how it can give us hope that there is people who care about our conditions and are trying to improve our lives.

I started off in PPI not really knowing what I was doing and if the comments I was making were correct or not but as I do more I gain new skills and my understanding of PPI is greater. I love being able to share my passion for it and hope that by expressing my passion and how it has affected me will inspire researchers to go out and plan PPI events and incorporate PPI into their research.

Today at the NRS Away day I really hope everyone got something out of what I said. It was lovely to hear all the positive comments and the thank yous that people gave me is lovely to hear.

I want to open up and if anyone is reading this post who wants to find out more about PPI or how to get involved please leave me a comment as I am more than happy to answer questions and point you in the right direction.

Any questions just ask!!!!

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What is PPI?

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In my blog I have spoken a lot about PPI or Patient and Public Involvement but what does it mean?

When hearing the term PPI (apologies for the big assumption) most people will automatically think “payment protection insurance”. I must admit I first thought this when I first heard the term PPI. You hear and read about  PPI everywhere and commonly associated with the annoying phone calls you get from unknown numbers between 5:30 and 6:00pm at night.

If you were to google the term PPI you would need to scroll through 4 pages of sites all about payment protection insurance bar one suggestion which on the fourth page is for another sort of PPI- this one being a proton pump inhibitor to help with acid reflux. One the fifth page right at the top I finally found a result talking about another kind of PPI. The kind of PPI I do.

The PPI I do and am involved in is nothing to do with payments, money or insurance but is Patient and Public Involvement in research. It is a source of information which can give the opportunity to researchers to have their project stand out from the rest.

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(I am not an academic so forgive me if I am generalising too much)

Researchers will often have a project in mind that they wish to do, or a question they want answered that can be achieved by conducting research, but if the research is to be really worthwhile, it needs to influence those they want it to – patients, families and health professionals. Having patients or public involved helps to ensure that the research question, and entire research process remains focused on what is important to people with asthma and therefore the results obtained can hopefully make an impact or health improvement in the person’s life.

It is important for researchers to remember that PPI is not about participant recruitment to a study.

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If like me you can’t take part in clinical trials or you just don’t want to be a guinea pig but want to do something worthwhile which could potentially make a difference to the life of someone with asthma then PPI could be for you.

Visit http://www.aukcar.ac.uk to see what the research priorities of the centre are and what sort of research is happening. On the page ‘How to get involved’ there is an email you can use to send in your interest and join the PPI group which is just about one of the largest PPI groups worldwide for asthma research (I think- but I may be wrong, it is certainly up there)

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I get emailed every now and again by either the research fellow co-ordinating all the PPI volunteers or by the PPI lead for AUKCAR with various different requests for my advice. Some examples of the things you may get asked to do are:

Lay Summary Reviews: most research proposals need to have a lay summary – – a summary written in plain English rather than using more complex English and technical terms which are foreign to just about everyone other then those involved in research. Carrying out a lay summary review is to read it and comment where something may not be clear, or you are not sure of what something means, or abbreviations have been used with no explanation of what they are. They are often in word documents so using the comment tool is good to show bits you’re not sure of. All responses from PPI members are collated by staff at the Centre and fed back to the researcher.

Patient Advisory Group: where you will be involved in the research process right from the start. I am in a few of these and they commonly have perhaps 2 face to face meetings a year with the researchers in the study and then email correspondence or teleconference calls. Again you are asked to comment on lay summaries, patient information sheets, or are even asked about any ethical issues you perhaps might think there may be. I have only got this far in any Patient Advisory Groups I am in just now but as the research progresses I will give my opinion on the results and other bits I am not quite sure of yet!!

PhD Review Panel: in AUKCAR there are a number of PhD students and PhD projects that are put forward to try and win a grant and get funded. You can sit on a review panel and read the various PhD proposals and again comment on bits you think make sense but most importantly if they have a good plan for using PPI throughout the piece of research. You make comments by email first, then a face to face meeting or teleconference with others on the panel takes place to discuss what you all thought and then this is fed back by the PPI Lead for the centre.

Patient Information Sheets: information in these is so important – they explain a research study to people who have to decide whether to take part in the research. Having a lay person (non medical or academic) review the information sheets to ensure they are understandable to those recruited and make sense explaining every part of the research and how the participant is going to be affected and what is expected from them. I have done a few of these and have found the researchers are so grateful for any comments that make them easier to understand.

Help design a piece of research: Opportunities arise where you may be able to help in designing the study right from the start and what the aim is and the best way of sourcing the information the researcher wants. I am involved in something like this just now where I am helping to work out different ways of getting the information we want and the various methods we can use for it.

Publish an article yourself: I have recently written a short article for the British Medical Journal for a patient series called ‘What is you patient thinking?’ which is meant to be a learning tool for Drs to make their practice better. Naturally I have written mine about attending Accident and Emergency having an acute asthma attack. I have written it highlighting ways which it could perhaps be made easier and a more pleasant experience.

There is a very wide range of things you can be involved in and in a variety of different ways. You can do as much or as little as you want. Emails come out with requests but you don’t need to do all of them unless you want to.

The team in AUKCAR are fantastic and really supportive. If you’re not sure about something they are always there to give you answers to any queries you have. My first ever thing I did as a PPI volunteer I was really nervous about what was expected and what happens if what I write is wrong- but nothing you write is wrong. It is all helpful suggestions. My comments have varied from comments all over the pages and I felt I had gone over the top but then others where I didn’t have any comments. The researchers don’t find out who has said what unless you respond to them directly then they see from your email but they never discuss what you have written or question you about it.

You may probably guess I really enjoy being part of AUKCAR and being a PPI Volunteer so I would definitely urge anyone who might be interested to get in touch and give it a go. If you decide it’s not something you want to do after trying it then that’s ok – it’s not for everyone.

Big thank you to PPI Lead reading this for me first!

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(I do want to say this post is just my own and am not being asked to write it and not gaining anything from it if people do decide to join the PPI Group at AUKCAR.)

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.