Patient and Public Involvement- What is it all about??

I recently asked on my twitter if anyone had any questions about patient and public involvement (PPI) and I got a few messages and emails with questions. I am going to divide my answers into two different posts. One post answering questions asked from a patient perspective and what PPI is like and then another post focused on how people can do PPI as I had a mix of questions from people wanting to get involved in PPI but don’t know who or what it entails and then questions about doing PPI from a researchers point of view. Before I start I do need to say that this is only my perspective and my experience. Everyone may have a different experience which is polar opposite to mine.

How do you get involved in PPI?

There are various different ways to get involved. I got involved quite by chance through meeting someone. Within some disease networks there are PPI groups such as the Asthma UK Centre for Applied Research has its own PPI group but there is also more generic groups such as one based at the Wellcome Trust in Edinburgh and also an NHS one in Glasgow. There are more groups around the UK which I am not familiar with but a google search does bring up a few different options. Visiting the INVOLVE website is a useful tool which has a list of PPI groups around the UK.

Do you have to spend a lot of time or fixed amount of time doing PPI?

With PPI there is no set time you need to spend. For me I spend a lot of time dedicated to PPI but that is because I want to and I go looking for things to do. When I am busy with other things I don’t take on so many tasks so less time is spent dedicated to PPI. It is very flexible and variable. In essence you can do as much or as little as you want and spend as much or as little time you want on each task.

What actually is PPI and what do you do?

PPI is very difficult to actually define and narrow to a precise thing. PPI is about working with patients to ensure the research being done is actually in the best interests of those with the condition and ensure it is applicable and not research being done for research sake. PPI is a collaboration between patients and researchers to achieve the best possible outcomes. This can be done several different ways:

  • Co-applicant on grant applications
  • Co-author on research studies
  • Lay summary review to ensure the language used is easily understood by a lay person
  • Reviewing patient information sheets, making sure they make sense and explain properly what the research is about and what is being asked of the participant
  • Attend focus groups to discuss research ideas
  • Sit on a steering group or advisory group

This is a short list of some of the things you can do but it is in no way a complete list. If you do not want to do any face to face PPI then that is ok as there is ample tasks which can be completed via email or virtually.

When I was doing my first bits of PPI I didnt know if I was doing it write or wrong. I was asked to review a lay summary which at first I was excited to do but once I opened up the document I suddenly thought I didnt know what I was doing and was worried I would do something wrong. I was concerned that a researcher had spent ages putting together the lay summary and I was going to comment on it. I felt I didnt have the right to do this as they were an early career researcher and I was just a patient. I was put at ease by another PPI member who explained that the language researchers use is totally different to lay language and they often don’t see how they should write to make it easy to understand because their language they feel is easy to understand. Over time as I have more experience I find it easier to make constructive comments and make improvements. Researchers who buy in to PPI are grateful for the input and help you give them.

Do you need to have a medical or research background?

No. I happen to have a nursing background but this is not required to be able to do PPI. Equally there is no qualifications required to allow you to do PPI. All you need is enthusiasm and motivation. Generally people get involved in doing PPI because they have a condition or are affected by a condition for which they way to make a difference and help. It helps to have experience of the condition you do PPI for although not essential. I find my experience of having asthma means I understand the needs of those with asthma and where research is needed and what is applicable to those with asthma.

Why is PPI done?

PPI is done for several different reasons. It means research is being done for or with patients rather than to or about patients. It keeps research real. It can influence what research is done and how it is planned. It can also help improve the experience of the future participants in that research because you have been able to identify where needs have not been met or where there may be a flaw in the study design which may limit the number of participants recruited.

What are the good bits about doing PPI?

It is difficult to note down all the good bits as there are so many but for me there is personal gain to doing PPI and also the gain to the researcher. PPI fills a gap for me. Going part time at work meant I was left with a lot of dead time where I would sit thinking I should be working but wasn’t able to. Instead PPI slots in nicely and gives me a focus to my down time and something productive to do.

One of the other really positive parts of PPI which I really enjoy are seeing the change in researchers. I have had experience a few times where researchers don’t buy in to PPI and therefore do the minimum amount of PPI that they can get away with. However spending time with the researchers who don’t embrace PPI and help them to understand how PPI works, the benefits of PPI to their research and seeing their attitude towards it change is so rewarding. Its just about recognising that not everyone knows what PPI is, understands it or knows how to implement it.

Have you had a negative experiences?

I have been lucky in that I have not had many negative experiences being involved in PPI. There has been the odd occasion where I have felt that PPI was being done because it had to be. It makes it a uncomfortable experience, much like when you are in the company of someone who doesn’t want to be there. I have learnt over time now and experience to challenge those when I am put in that situation and ask why they don’t embrace PPI and if there is anything I can do to help change their opinions or make it easier for them.

What happens if you don’t agree with what is being done?

I have never been in a position to not agree with what research is being done but if I was I would probably just not volunteer to do any PPI on that piece of research.

Do you get paid for what you do?

Not really. You may receive a gift voucher for what you have done as a token of appreciation from the researcher but this is mainly when you are required to attend face to face tasks rather than virtual tasks sent via email. If you need to travel to attend things you are able to claim back travel expenses but it is generally voluntary. I wouldn’t want to be paid for what I do as I really enjoy it and I feel that PPI has given me so much that I wouldn’t have had and it has really helped me.

There are more questions which I am sure people may have and if you do please comment on this post and I shall answer them. This is just my opinions and answers to the questions asked, others may have different answers.

As you may be able to tell I love doing/ being involved in patient and public involvement. I would really recommend to anyone thinking about it to jump in and get involved. If you try it and find you don’t like it then there is no obligation to keep doing more but if you do like it you can do as much as you want.

I will do another post with the questions which are more geared to researchers in a week or so.

 

 

Sadness and comfort rolled into 1

This past week has been really tough and emotionally I feel a wreck. In fact I don’t really know how I feel. There is a surreal aspect to everything like everything is a dream and I am just waiting to wake up from it and everything will be alright again.

Last week on Wednesday night/ Thursday morning I got a phone call from my Granny’s nursing home saying she was having difficulty breathing, struggling and quite anxious about it. I went round to see her. There was no question I wouldn’t go. 1am in the morning or not. Knowing what it is like to struggle to breathe and the fear that grips you meant I knew I couldn’t leave Granny to go through that on her own and had to be there with her. I was really rocked seeing her. She has had a bad chest for a while but she just looked so frail and vulnerable when I saw her. I was able to just sit with her while we waited for the Dr to come out and see her. She had some nebulisers and it settled her chest down and she was able to get a little bit of sleep and I went to work.

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After work I went in to see her and was really pleased to see her sitting up in bed, looking a lot more relaxed and we had a good chat. I had told her in the middle of the night I would bring her a smaller nebuliser mask as the one she had was huge and covered her whole face. Needless to say I forgot to bring it with me and she sure remembered about it and told me off (in a kind way) for forgetting. This reassured me as she had her old ways back and things so I was happy. I didnt stay too long because we had a good chat and I could see she was getting tired and dozing off while I was speaking so I decided to leave and would come back after work on Friday.

However less than 2 hours later I received a phone call from the nursing home saying Granny had taken a turn for the worse and lost consciousness. I didnt comprehend it but I could tell by the urgency in the nurses voice along with the apologies that Granny wasn’t so well I knew I had to go to the nursing home as soon as possible. So throwing clothes on and rushing to the nursing was all I could think if. The drive there felt never ending, waiting a red lights seemed to take forever. It is only a 10 minute drive if that but it was a very long drive. As I was on the road I got a call from my Dad to say Granny had died. The nurses were with her when she died so she wasn’t on her own. I didnt really believe it until I arrived at the nursing home and saw my Dad.

I went in to Granny’s room and just broke down. I couldn’t believe it. She seemed to be improving when I saw her, she was comfy, we had a good chat and giggle. She was planning on what she was going to watch on TV that night- complaining that there wasn’t much on. I had no reason to think I wouldn’t see her on Friday as felt she was more settled and not as wheezy.

I am beyond devastated about it. Reflecting back I can see now that I think perhaps when I saw her she was on a false positive. They do say that just before people die they have a bot of a boost of health before that final decent. Perhaps this was what was happening when I saw her at 5pm she had a boost of energy and settled herself so she could pass away peacefully and comfortably.

It is a great comfort to me that she didnt suffer and what is special is she died on the anniversary of my Uncle’s death- her youngest son who tragically died in an accident. My grandpa died at the beginning of December too so they are all reunited now. Part of me wonders if Granny wanted to die on that day. There is something very special about it. I know they are all there looking down over the family watching what we are doing.

I have found with Granny dying I need to be suer careful. My breathing has already been a struggle even before Granny got unwell so managing it with the added upset and stress has been a challenge. I am so grateful to the support I have received from friends, family, colleagues. I have had the confidence to manage my chest as I see fit to ensure I am ok and stay well over the Christmas period and New Year as well as for Granny’s funeral. I took the opinion that I would need to stay on my high dose prednisilone to get me through this. It does mean that the side effects are really taking its toll on my body due to the lack of sleep, restlessness and the extreme hunger but they are all things that can be reversed where as missing Granny’s funeral because I got unwell cannot be reversed so that is my priority just now.

I still cant believe it but a poem Granny gave me after Grandpa died sticks with me and I can call upon it for the 3 of them up there.

Taken from Ascension

And if I go

While you are still here

You will not see me

So you must have faith

 

Wait for the time when we can be together again

Until then live life to the fullest

And when you need me

Just whisper my name- and I will be there.

 

 

Love you Granny xx

The cost of 4 hours fun

Last night I was able to do something I have not been able to do in a long time. I went to my work Christmas night out. I had a fantastic time and really glad I made the effort to go.

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For a work Christmas night out most will be planning on what they are wearing, where to go for pre drinks and maybe have food in for the day after when you are hungover, but for me it was far from this there was a lot more planning and making sure everything was ok so I would be able to last the time and not have too many ill effects.

The preparation started middle of the week before by not dropping my prednisilone dose down. I have been trying to wean it down but I decided that to enjoy the night I would need to keep my steroids up which is not ideal but sometimes we just need to take more meds to give yourself a boost and enjoy yourself. After work on Friday it was time to down tools, have a nice bath, early night and rest. This was the theme for Saturday too as I knew to be able to have fun I need to conserve my puff, and energy and limit what I was going to do during the day. It is a choice between rest and have fun or no rest and no night out.

The rest sure was worth it and all the preparation. It was a personal triumph because for once all the planning and running through scenarios that might happen meant I was ok and managed everything ok. I did perhaps over do it on the dancing but I do love a ceilidh but thanks to modern technology I was alerted by my watch when my heart rate was way way too high and I needed to stop. I had given myself till about 11pm to be out till and am pleased that managed till 1030pm  before I decided to quit and go home. It wold have been so easy to think sod it an stay on longer but I made the right choice to go when I did as I don’t want to risk anything too much and really pay as a result of it.

Today has been a flop. My body is aching, my chest hurts, i feel short of puff and just a bit  rubbish, but at least I am feeling rubbish because I did something and pushed myself rather than feeling rubbish and not having a reason for it. One thing that really bugged me and it bugs me a lot but more so when it involves people who I know is those that decide to smoke and because its cold outside they smoke right at the door so when you open the door you get hit with a plume of smoke rather than fresh air. I guess when you smoke you don’t think about the air quality but when you have lungs that are twitchy and you have done all you can to ensure you are safe and avoiding triggers but still cant avoid them.  I find it really selfish because it is putting others at risk and effecting others along with yourself and those others have not asked to breathe in air packed with nicotine, tar and tabacco. I know some will think I am being unfair and its coz there was drink involved but Im pretty sure if I was to do something similar where it had a negative effect on them, there would be questions about it and a fuss would be made. Alcohol always seems to be an excuse and people don’t know what they are doing when they are drunk. But if you don’t know what you do when your drunk you shouldn’t be drinking.

Thankfully because I had my trusty portable nebuliser in my jacket pocket, inhaler in my trouser pocket and my buff to keep my neck, mouth and nose warm I was able to self treat and get myself home in  a reasonable state. It scares me to think that if I had not made sure I have all this stuff with me I would no doubt end up in hospital at the hands of other people. I may sound grumpy and you may think why did I bother going but I am glad I went and was all good while I was inside it was just when it was time to go home that things were not as great.

So Sunday (today) was a day in bed, resting and recovering ready to face the next week ahead with minimal ill effects. A Sunday roast with my mum and step dad set me up for a quite evening before back to work tomorrow.

I am really pleased with how I managed everything in the lead up to the night out and then knowing the right time to go home rather than pushing on because I was having a good time. It has taught me that yes the planning and pacing is worth it and it does work but also that its ok for my body to need extra time to rest up for something but also rest after the event. We all have different reasons for things and just because I need to plan things in more depth doesn’t mean I cant do them and doesn’t mean I should avoid them. I am glad it was a good experience as I was apprehensive that I wouldn’t cope, or that I would get carried away and push my limits therefore ruining the evening for others who would need to help me because of my inability to look after myself.

For pacing I have found the website My lungs my life really helpful with tips on pacing, planning and how to manage your condition while juggling all other aspects of life.

Ask me questions about Patient & Public Involvement???

I was recently interviewed as part of a study to evaluate the impact that patient and public involvement (PPI) has on research specifically within the Asthma UK Centre for Applied Research. Some of the questions made me reflect on my time with AUKCAR, how I got involved, what I enjoy doing, what I am not so keen on and what the positives have been. One question near the end of the interview was about retaining the PPI group, growing it and ensuring the longevity of PPI within the centre. I use my blog here as a way to talk about my life with uncontrolled asthma, the things it stops me doing, challenges I face but also the positive aspects of having uncontrolled asthma and the opportunities I have had which I would not have had if my asthma was run of the mill (it would be wonderful to have “normal” asthma and maybe one day soon).

I know some readers here will know what PPI is and may even be involved in AUKCAR already or other PPI groups but for those who are not I want to take the time to explain more about what PPI is, how to get involved in PPI and the real benefits to both the PPI member and also the researchers.

I could talk all day about PPI and how much I love doing it because it really has been life changing, but what is it? It is not payment protection insurance (which so many people think when they hear PPI), it is not sticking a patient on a trial steering group because a tick box says you have to, it is not to do the “right” thing so you get your grant for your study, it does not undermine research.

PPI is working with people who have or are affected by a condition to benefit research by keeping it appropriate to those with the condition. It means research is not just being done for research sake rather the end result will make a real difference to real people who currently struggle to live with a condition.

The benefits of PPI are multiple both for the patient being involved in PPI but also for the research and researcher. Personally PPI means a lot to me. It has taken what was a very negative and depressing situation and turned having asthma on its head and something positive has come out of it, from a selfish point of view it really has saved me, but then looking at the wider picture doing PPI has given researchers the chance to learn about the condition they are investigating. Not everyone doing health research has a health background and therefore don’t know the impact of having something like asthma on life but utilising PPI groups can help them understand and get the best possible outcome for their research and make it really beneficial.

Before I talk more which will probably be in another post I wanted to give readers the opportunity to ask me questions about PPI or AUKCAR, which I can then answer publicly here on my blog, it can be any question at all because if you are thinking about it there will no doubt be someone else out there thinking it to.

Please ask away!!!

Asthma Arcade

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I had a fantastic opportunity to visit Victoria Primary School in Edinburgh with the Asthma UK Centre for Applied Research. The P7 class had been learning about asthma, how it effects the lungs and breathing, what can make it worse and also what can be done to help it. As part of their learning they designed games uses a fantastic product called Bloxels where they could create characters, levels, baddies, fun fact clouds and all sorts which is then scanned and created into a virtual game on an iPad.

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The kids we saw had invited other year groups in the school to come to their Asthma Arcade to learn about asthma as they played the games. It became quite competitive as the P7 kids were wanting to get rave reviews from the others who came and played them. It was amazing to play what they had created and to see how each child was totally different and could go crazy with their imagination. There was no 2 games that were the same, some I found very difficult but I think that is more because I lack gaming ability than anything else.

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Seeing schools using novel and new tools to help children create and learn about something as important as asthma in a fun way and they all understood the reason for doing it. Some of the children had asthma and some didnt but the enthusiasm each of them had made going today really worthwhile even when presented by one child with an Asthma UK donation box asking for money!!! (sorry Asthma UK I didnt donate as didnt have pennies on me, but always willing to donate). If you want to see more the school has a twitter account where you can see more about their Bloxels and Asthma Aracade using this link: Victoria P7

I cant wait to see more that comes from this and hope that we can use their input in SPEAK Asthma events and meetings that we do in the future.

Having people who understand

One thing I have found often and more so just now is finding those friends who really understand what life is like. I have a great circle of friends but there are only very few who really appreciate how I have to live my life and the accommodations I need to make.

I have found since my breathing has got worse and everyday life needs to be planned out  it becomes harder to fit in and be able to do everything that I may have been able to do a few years ago without a second thought. I hate to think that I leave friends in the lurch but I know often I don’t commit to plans because I am worried that I will say yes and then have to pull out of something. It is just easier to not commit or turn something down to avoid the disappointment to me but also the inconvenience to others it causes if I cancel- and there is that bugging thought I have that they will just stop asking me to things as either I say yes and don’t go or just say no.

There are those few people in my life who really get what life is like and can understand how difficult it can be. One really good friend who I met at an event with Astra Zeneca just gets me and gets life. He understands, he has had asthma control his life too and desperately tries to do what he can when he can and doesn’t stop trying. When you have someone who you don’t have to ask to walk a bit slower because they can tell by the sound of your breathing that you need to slow, they don’t look at you as though your head is about to fall off for taking medication in public and someone who you can say what you really feel to. I have been so lucky to meet Anthony and since we first met conversation has come so easy and there is never that awkward silence.

When I first met him I had not long come out of intensive care and had pushed myself to go to London to speak at an Astra Zeneca event. He said as soon as he saw me he knew I wasn’t well and could tell by the way I was and the way I held myself. I guess us asthmatics do have a way about how we sit, and talk as I can tell with others if they are having a tough time with their breathing. He was so good to me and not in a pitying way but because he knew just what it was like. We have shared our challenges of living with uncontrolled asthma which stops us doing a lot of what we would like to and many of the frustrations which we both find everyday.

I really do cherish friends like Anthony because asthma can be so isolating and until you have had the struggle of not being able to breathe you really don’t know what it is like and can never know. We can give you an idea for example breathing through a straw, with your nose pegged and running up stairs but with this when it gets too much you can take the straw out, nose peg off and take in big gulps of air. With asthma you cant do this, you just have to ride through it and hope the medication works soon before you get too tired. Anthony is one person who I can really say if things are really rubbish, and that it is all too much, or that having asthma like this scares me, it really does and I hate that there are others who have it like that too but then I also don’t feel alone in feeling scared of asthma.

Being able to work together on projects with AUKCAR and SPEAK Asthma has been great as we both love working with children and people. When it was suggested that Anthony might want to come up to one of the SPEAK Asthma groups I couldn’t wait. We were able to spend time wandering around and seeing the Ice Sculptures at Edinburgh’s Christmas and then go to the meeting with the children and young people. It had been a bit of a touch week but this just ended it all on a high and made things all ok. I am looking forward to January and the Annual Scientific Meeting in Bristol where we can catch up again and arrange many more trips.

 

Rum- A History

The holy men from columns isles

With reverent step and show

By cool green dale and still blue loch

To others quietly go

O’er lonely moor and mountain praise to their god doth rise

Eagle startled soars aloft on dawns radient skies

 

Through narrow gap see shore and loch

The voiding Norsemen pour

The Holy men of Preistsdale a top they are no more

Ruined, sad and silent lies the humble cell

Desecante, blackened, broken the sacred silver bell

 

Peaks stand silent mourning tears on Kilmory’s strand

Families from home uprooted to die on foreign land

Sighs from holy Priestsdale stir the evening breeze

Wondering at mans cruelty to innocent as these

 

On a cool clean autumn morning the gentry well evolved as one (?)

To the new built lodge at Papadil the guns the gillies bore

The reeds and grasses whispered to the holy ones as these

Children in satanic mills died for the life of ease

 

The modern travellers weary gasp on the scene below

Ruined lodge and stricken trees mid primrose golden glow

On secret rock and hillock quiet spirits gently smile

Knowing that one the least of these would linger yet a while

 

Pale moonlight casts cold shadows on sterile counterpane

The useless restless fingers clutch and twist in vain

In far off lonely Preistdale the wise ones sit and wait

‘Come’ they whisper gravelley Come tis not to late.

 

Robert Fulton 21.08.2011