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.

“Asthma charity may quit Scotland in London office switch”

I hummed and hawed about this post and how to write it and what to write. I don’t think I have ever started and restarted a blog post so many times trying to find the right was to express my thoughts.

“Asthma charity may quit Scotland in London office switch”. That was the heading of a front page article in The Herald on the 23rd July 2015. As it turns out the article was speculating and making suggestion that the Asthma UK office in Scotland may be closed and those with asthma in Scotland would no longer have someone in Scotland ensuring that asthma is recognised and on the agenda not only for the NHS but also for the government.

As it turns out the article is effectively a lie. The suggestion that Asthma UK is considering shutting its Scotland office is false. The decision has been made- they are shutting the office. For me personally I am devastated hearing this news. Not only am I devastated but I am also angry. Asthma UK Scotland has had such a big part of my life and helped me so much particularly recently when I struggled to come to terms with just what my asthma was like and how it was effecting my life. The people in the office made so many opportunities  possible for me. If it was not for the invitation to the launch of AUKCAR by one man my life would be really different. I would not have the understanding about asthma, the knowledge of research and the research process but more importantly I would never have met the individuals who really want to make a difference to the lives of people with asthma like me.

I really am saddened at the loss of a great bunch of people who were such an integral part of asthma in Scotland. There will be a big hole left. I know so many will be feeling such a wide range of emotions- I have gone from saddened, to anger, to a sense of grief and fear. Why fear- I am scared that asthma in Scotland will be forgotten. It is such a big part of the lives of so many and the Asthma UK Scotland office kept asthma on the agenda and made sure that the health service, the scottish parliament and anyone else who could influence change were always aware of the devastation asthma is causing where is really should not be. Asthma shouldn’t kill, it shouldn’t hospitalise so many and it shouldn’t dictate peoples lives.

I am fortunate that I am surrounded by people who care about asthma and want to help people with asthma. I am part of AUKCAR and being part of that I can see first hand the research that is taking place to make developments but I am in a very special position. Before being part of AUKCAR I looked to Asthma UK Scotland and relied on them for advocating for us. It worries me that despite the newspaper article saying the offices in London will look after us in Scotland  I sadly won’t believe it till I see it. Having felt let down by them before I have in the back of my head that this will happen again.

When was I let down?? I always used to help out at events in Scotland particularly those in Edinburgh. I would be part of the cheer team during the half and full marathon. I cheered runners on as they raised vital money for asthma research and support for those with asthma. I ran the half marathon for Asthma UK in Edinburgh. I was looking forward to the event. I was also looking forward to see those from Asthma UK support their runners like they had before. Water station after water station I kept looking for the distinct lime green and purple but never saw it. There were many other charities lining the streets but Asthma UK was missing. I did not let this phase me but I was pretty upset that after all the times I have turned out to help they were not there when I ran. I asked why and was told that they don’t get a lot of support in Scotland and not many people taking part in events so it was not beneficial for them to send a support team. I volunteered several times to hold a cheer station and would attend different events for the runners raising money for Asthma UK but events were all run and organised by the London office. It appeared to me they were not interested as I never had much response at all from London. I would have thought they would jump at the chance for people volunteering to do something. It is not like they had no runners either. There was a huge number and I would see a lot of Asthma UK running vests who could have done with support. This previous experience as trivial as it may be has given me a predetermined expectation of what support Scotland will get.

One of the vital things we have here in Scotland and more importantly Edinburgh is we have the opportunity to attend cross party group meetings for Asthma where politicians will actually listen to asthma and lobby parliament for things and make sure asthma is not forgotten.

It is with a really heavy heart I say goodbye to Gordon and Karen (and Shona also). You will be missed a lot. You have done so much for people with asthma in Scotland. You have our support and I hope whatever you do next you continue the fantastic job you have done for us here in Scotland (even if we do stress you out etc!!).

Im left with a lot of different thoughts and decisions on ideas I have personally for asthma in Scotland. A few are: Will the cross party groups continue or how can we sustain them? Is there a benefit to set up my own charity for those with asthma in Scotland? Will Scotland become a forgotten entity much like the forgotten generation?

I realise this is a very one-sided opinion and view. I know it is not only Scotland that is going to suffer but Scotland is important to me and I am sure those in Wales will feel the same about Wales.

I found this so difficult to write mainly because I am so aware of my role in the Asthma UK Centre for Applied Research which I love and therefore have to work with Asthma UK but I also feel deeply let down by them and need to express how I feel as I am sure (in fact I know) I am not alone in my feelings and thoughts. Only time will tell and I hope Asthma UK prove me wrong and support Scotland just as the Scotland office has done on so many occasions individually but also for all with asthma in Scotland.

 

Educating the next generation of researchers!

Last week has been really busy but really busy in a good way!!!

I had a day which was a bit of an AUKCAR day- starting with a PPI teleconference, moving to discussions about the Children and Young Person’s Group before finishing with a Webinar for the PhD students. A busy day but lots accomplished!

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The Children and Young Persons group is really taking shape and we have a number of enthusiastic young people contributing. Our one hurdle just now is trying to work out a name which can be catchy but still gets the point of the group across. My imagination is very limited so coming up with a name or acronym is defeating me. I am sure something will come up between those of us involved in the group (I hope!!). Back a year ago when I was first asked to be involved in the CYP I never imagined it would be as it is. I am not sure what I was expecting but having had no experience in helping to run a group like this I really didnt know what I would be in for- all I knew was I wanted to involve young people in research for asthma after my teenage years have been effected so much by it. In time we hope to have the group spread to different areas of the UK so all asthma researchers can have access to young people for input into their research.

For me one of the highlights of the day was taking part in the webinar for the PhD students- the next generation of asthma researchers. A slightly odd experience having never taken part in a webinar or any sort of video conferencing- but after a while it was not too bad and I got used to the changing screens and seeing yourself on a screen too!!

When I first joined AUKCAR I made an assumption that everyone involved in the centre and its research would know all about asthma, inhalers and the different medications. I guess I was shocked when I sat down to dinner with one of the students to discover they didnt have much of a knowledge about asthma. As the conversation moved on I found out that just because students were doing a PhD involving asthma did not mean they were a medic or from a medical background. There are nurses, engineers and a variety of other backgrounds which would never expose many of them to asthma and the physiology behind it. There is something overwhelming in a way that people who are not always connected to asthma want to make a difference to the lives of those with asthma. I don’t know how to describe the feeling- part of me questions it thinking “why asthma..its only asthma after all” and it is far from one of the diseases which is “sexy” in the research world where there is a huge amount more funding. It is just asthma- but just asthma effects so many people in so many different ways that it does need more recognition and investigation into why it can be such a life threatening disease.

After discovering the variety of backgrounds and having chats with the students I decided to suggest the possibility of doing some asthma education and speaking to the PhD students about living with asthma and how it can effect daily life. Im not sure if i expected anything to come of the suggestion but it was great to find out that a webinar was planned between 3 different universities to learn about asthma and also hear our experiences of living with it. For the first time it was done I was pleased with how it went. Having 2 PPI members there swell as one of the researchers gave the students different perspectives of asthma and how it is not the same in everyone. Myself has the slightly more uncontrolled asthma whereas the other member has relatively mild asthma so his experience is very different from my own.

I hope the students got a lot out of it. I tend to look back rather critically at how I have done when speaking and did feel I could have improved and made it a bit clearer should I need to do it again but we did have good discussion and the students all had questions.

Sitting in at the end hearing the students update each other on how their respective PhD’s are going was good. Some are much more engaged in PPI than others and it was good to see where there is a gap for PPI in the some of their projects but more so I was able to see the potential for where our CYP group could give input to help the students.

There has been lots going on but all good and keeps me busy!!

World Asthma Day 2015

Tomorrow is World Asthma Day aka WAD!

This time last year I didnt think too much about it and never even thought I would be where I am today. I was focused on my Step Dad’s 60th birthday which happened to fall on WAD. I have never really done much for WAD. However last year for some reason I was compelled to put together a photo montage of how asthma effects me and what I can still do despite having asthma.

So much has changed both good and bad. It has been a huge rollercoaster. Sometimes I just want to jump off and other times I want to stay on it and never get off. Starting with the bad. My asthma has been really bad. My lung function is at an all time low, I find I am symptomatic a lot of the time, I am taking more medication than my 88 year old Granny and the rest of my family put together and this still doesn’t give me the quality of life I once had. I will however still fight for the life I want. I will not give up- mainly because I am too stubborn and won’t let my asthma win no matter how hard it tries!! (this is one of my downfalls as I fight it too hard and often don’t get help early enough- I am working on that though!!)

So for WAD 2015 I have put together another photo montage called “My Asthma Year”

So onto the GOOD!!

This year from WAD 2014 to WAD 2015 has also been awesome. What started as a bit of awareness making the video snowballed into something I would never have even considered possible. I am now part of the Centre Management Committee for the Asthma UK Centre for Applied Research (www.aukcar.ac.uk ). I am also a Patient and Public Involvement Lead (PPI) for Children and Young People within AUKCAR. It has still not quite sunk in the role I have been given and how much my work is appreciated by those in the centre.

I started off by being invited for coffee with the PPI Leader from the centre to discuss ways I could become involved and help. My particular interest is children and young people as my life as a young adult has been so effected by asthma, it would be great to use my experiences to help researchers help other asthmatics.

So from a chat in May 2014 to May 2015 and I am in the position I am in is totally brilliant and one I would never have expected. I remember at the start not really knowing exactly what I was doing back in May last year. The thought of reviewing a lay summary terrified me a bit but after the first few I found it fascinating and really enjoyed doing it. I was not sure how many I should be doing etc but as and when the requests came through if I had time I would sit and read the summaries and comment. Because I found I really enjoyed it the time aspect never bothered me. Many who I would meet with from the centre commented on how much I was starting to do. I was not aware of this and didnt see it as a lot. From a personal point of view the Centre came to me at the perfect time as I was reducing my hours at work so reviewing summaries and patient information sheets filled in the time nicely. It also gave me something productive to do when waiting for my nebulisers to finish.

Later that year I was invited to the 1st Annual Scientific Meeting in Oxford with the AUKCAR and found myself speaking infront of all who attended. My public speaking was not the best and I was very nervous. Breaking down in tears was not my best moment but ironically it got the point across to many just how serious asthma can be and how much it can effect peoples lives.

Since joining AUKCAR I am so proud of what I have been able to contribute and in so many different ways from speaking at the meeting, taking part in teleconference calls, reviewing lay summaries, reviewing participant information sheets and ethics sheets, being part of 2 patient advisory groups, reviewing PhD proposals, helping students who are under taking PhD’s in the asthma field, helping to start our Children and Young Peoples PPI focus group, being part of a focus group surrounding the volunteer database which is one of the aims of AUKCAR to set up. The list is never ending on all the different opportunities I have been given as a result of joining AUKCAR. I am so grateful for it and those who are involved. I will never be able to express in words how much of a positive impact AUKCAR has had on me.

I am not doing anything particular for WAD. I will be thinking of all those who have died from asthma. Particularly the 7 friends I had to have all died as a result of asthma or complications such as cardiac arrest due to an asthma attack.

I will leave you with the post I made a year ago about WAD 2014

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A cure would be great but control would be better.

Anyone with asthma or even any long term condition wants a cure to be found for their condition. A cure would mean so much, less medication, no hospital appointments, less time miss off work, ability to get travel insurance, do the work you want, play the sport you want, sleep a full night, not feel isolated, be independent, no hospital admissions, able to not live in fear, have no fear of dying or friends dying, being able to have a life again.

However, as anyone with a complex long term condition knows a cure is not just around the corner. In my lifetime there has been one asthma specific new drug and another which can be used for asthma and allergies. That is 2 medications in 29 years. On average it takes 17 years just now to produce a new medication to treat asthma.

Yesterday I was at the Cross Party Group meeting for Asthma with Asthma UK at the Scottish Parliament which was a great meeting. It was focusing on the need for more research into asthma. It has been chronically underfunded for years and years. However after the NRAD report into asthma deaths there have been some fantastic opportunities for Asthma Research. The Asthma UK Centre for Applied Research was launched, Asthma UK is involved in the European Asthma Research and Innovation Partnership (EARIP) and asthma has become a condition which the FARR Institute is going to use as a blueprint for the way in which long term conditions are diagnosed, monitored and treated.

It is fantastic that there are some world leading researchers wanting to make a difference to lives of people with asthma. One thing I did notice yesterday was the focus on a cure which was talked about by one speaker. I would love for there to be a cure and for a reason to be found of why asthma is so complex and difficult to treat in some people. The more pressing thing is to find a better way to manage asthma. By managing asthma better the quality of many asthmatics life is greatly improved.

This is what I love about AUKCAR. I may be biased but they recognise the immediate need for asthmatics rather than focusing on discovering a cure. The need for better management, reducing hospital admissions due to asthma and the most important reducing asthma deaths.

By being part of the CPG and AUKCAR I can help make a difference. It may be small but small is better than nothing!

Patient and Public Involvement aka PPI

Our Patient and Public Involvement (PPI) Forum lead gave a short course on what PPI is and how to use it in research as well as the benefits of using PPI which is often a forgotten entity in the research process. I was observing this course and chipping in periodically along with one of the other PPI leads which I think benefited the participants as they could see just how PPI can be used from our point of view and what we actually do.

During the morning I realised I have talked about my involvement with the AUK Centre for Applied Research (AUKCAR) but never really gone into detail about what I do and what PPI is. Many people look at me quizzically when I say I do PPI as they assume is it payment protection insurance which it is not!!!

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PPI is not a way of recruiting participants for your research. PPI is there to be involved in your research. We can help determine research questions and if they are appropriate for the specific condition. In my case Asthma. As part of PPI I review research summaries which have been written for the lay person- to weed out those scientific terms which creep in and suggest plain english terms to be used instead. I have also provided feedback on patient information sheets to make sure the participants will full understand all aspects of the research and the requirements of them. These are often the bit parts you can be involved in.

As part of PPI I also sit on a patient advisory group for a study which we provide feedback throughout the whole research process from applying for ethics approval to the dissemination of the results 3 years later.

The list is almost endless about all the different things I can do and it is very difficult to say no to certain things. It is not feasible to help out on all the projects which you are asked to do. This is particularly hard when it is an area so close to your heart. Asthma has effected me throughout my life, dictated not only what I do but sometimes what my family and friends do as well. Having the opportunity to be part of something which will perhaps make a difference and mean change can be made in asthma care, treatment, management resulting in no one having to go through some of the stuff I have been through. Knowing that this could potentially happen is such a rewarding feeling.

Today the lead mentioned how I do do a lot and need to be reined in sometimes but being involved in PPI has given me something so valuable and came at a time where I thought my career was potentially over, I was in a pretty bad place mentally and could see no way out. To me asthma had taken control of my life and I could find no way out of it. To some extent it still does have control over what I do and when I do it but I can change this from a negative to a positive experience. Being part of PPI gives me a purpose. When I am not working I am not sitting wondering what I would normally be doing but I can sit and read research or see what is going on in the centre. The advantage doing PPI with the centre is that much of it is done in my own time. During the sleepless nights when I am needing my nebuliser I can do some PPI work and read lay summaries and comment on them. I don’t need to try and fill the time with watching rubbish on the TV.

In the centre I am not the only one effected by asthma. All the PPI leads have different reasons for working with the centre and have had their life impacted by asthma in some way wether they have it, family members have it, family members have sadly died from it, there are a huge variety of reasons, but for me I am just now being effected by it and sharing  my experiences I am living through just now as a result of asthma.

If I could do more I probably would. Often people ask if there is an incentive for being part of PPI and there is a huge incentive for me. Its about making change. Without the centre change would not happen and PPI can help by ensuring that the research done is the most applicable research for people with asthma and those effected by it.

I love doing it. It has given me a purpose again since having to give up so much. I am not sure what I would be doing if I was not involved in the centre. Probably wallowing in self pity about how unfair life is.

Today I also met a researcher involved in renal research so hopefully I will be able to bring some of my PPI experience to work and help the researchers there use PPI effectively!

Small steps will make big changes.

Today has been one of those days where bits and pieces happened and the end result should make a huge difference.

Today was a particularly bad day breathing wise. I knew I was starting late for work as I was due time back but nebbing hourly from 5am was not the way I planned to spend my lie in!! So not a good start. The day physically didn’t change much for me. It almost felt suffocating at times. It was hard but I got through the day and remarkably in the last hour my breathing has eased up….40mg of prednisilone will do that I guess and some painkillers!! But thats not the point of the this post.

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So I was saying lots of little things happened today which were all totally unlinked and all events/ emails/ letters were from different people who have no interaction at all but everything happened during the course of today (I am superstitious and since my Uncle died odd things have happened and I just wonder if he is responsible for today….dont laugh. I used to laugh at people who had thoughts like that until it happened to me).

First off I read the first of many emails regarding the volunteer stuff I do from AUKCAR. The email meant a lot. Much more than the person who sent it knows. I comment on PhD’s students participant information letters to make sure they are appropriate and could be understood by those targeted. I really enjoy doing this. But the student emailed one of the PPI team about the feedback. This team member then emailed to say how much my help was appreciated etc. It was such a positive email and really made me happy. I love doing what I do and even if I got no feedback about what I did I would still do it. Being able to do something I enjoy and knowing it is helping someone else is so rewarding. Much more than fundraising. So this was the first thing.

I then read another email about a Long Term Conditions report which I spoke to a member of staff about and although I don’t want to mix what I do with my outside life and work together I think the results from the report are really pertinent especially given our work is dealing with patients who also have a long term condition.

It was also great to see our Young Patients Group starting to evolve and dates being set for focus groups but not much to say about that.

The last thing I guess which is what role everything from today together is that when I got home from work to open my post I had a letter from the Royal Infirmary. I hate getting letters from them because it is either for appointments with respiratory or cardiology, occupational health or charge nurse doing promoting attendance to work meeting. To my relief it was none of the previous. Instead it was from the consultant researcher leading the PACT study in Edinburgh. Basically putting together care plans for people who have a long term condition who end up presenting acutely unwell to A and E. This care plan is meant to aid Drs treating people. To me this is a massive thing. When I lived in England I had one and it was followed very closely, since moving back to Scotland I have had nothing and this has made some A and E visits very difficult. The care plan along with all the important things like how to treat me, a little bit about my asthma, my medication, allergies etc it also has a bit about patient preferences which is almost the most important part. For example 2 things on mine which can make an admission very stressful is Drs trying to guess what your saying and also them fighting for an artery for a blood gas and not listening. My right wrist a vein runs over the artery so always yields a venous sample. My left wrist is so hard and scarred that the needle bounces off the artery so brachial ABG’s or femoral stabs need to be done. Most Drs won’t do brachial because of clot risk so it can sometimes be distressing trying to make them understand. Having an ABG is not like having a normal blood test where I don’t care where they poke about- it doesn’t hurt so they can suit themselves.

So this was a huge positive thing to know I have this care plan and to know it is now on the hospital computer system so whenever I am admitted the Drs will have easy access to it. That was not the only good thing to come in this letter.

The researcher also mentioned that he had spoken to my consultant who wants to meet up the three of us to go more in depth about the best emergency treatment but also the researcher mentioned about my involvement with AUKCAR. I had not told con about this not because I was hiding it but with him being new I just had not had time in appointments. So he wants to meet to discuss it further to as he is interested in it. Which is great especially after I had a rather cool reception about it from people previously involved in my asthma care.

I feel that all these things today are little steps all completely separate but all so closely linked to one common cause and that is to make asthma control better, better self management and ultimately better patient experience and a better patient/ asthmatic. It just so happened it all happened today but I was glad of it. It made me even more focused on wanting to continue doing what I do with AUKCAR and grab all opportunities with both hands. In the past people have been cautious and not wanting me to do too much as I am a volunteer but I love doing it and being affected by asthma so much, to know that there are people out there trying to make a difference for people like me. If I can help researcher to understand better, or give advice, or just show where the weaknesses are in asthma it makes it so worthwhile. I don’t really even have to force myself to sit down and reply to emails or comment on abstracts or information leaflets, it just comes and is enjoyable.

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Although today has been a real struggle with my asthma mentally it has been really good with little bits of things filtering through. It is hard not to get down when every breath feels like you are breathing through a tight straw with a close peg on your nose but people taking the time to thank you for what you do means so much.

There is a lot coming up in the next few months conference calls, cross party group meetings at the Scottish Parliament, focus groups, PPI sessions and I need to write a couple of things to. So loads to keep me busy especially on these long nights where sleep is hampered by predsomnia!