AUKCAR Annual Scientific Meeting

Last week I travelled to Bristol for the Asthma UK Centre for Applied Research annual scientific meeting. I really enjoy these meetings as it is an opportunity to meet other members of the patient and public involvement (PPI) group which I do enjoy. With PPI you do a lot of things fro the comfort of your own home and only on the odd occasion do you get the chance do have face to face meetings so it is great to be able to meet others and share experiences and what projects we have been part of. I am fortunate that living in Edinburgh and being part of the centre management committee I get to attend quite a few face to face to face meetings so know who people are more than others in the PPI group do.

This years meeting was focused around what impact that the research the centre has been doing has had on those with asthma. As we are coming near to the end of the 5 years funding it is great to see what has come out from the centre. There has been a huge amount of growth in the centre with a large number of new PhD students starting and more Universities who are affiliated with the centre as well as more researchers to. Seeing this growth instills a sense of hope because for so long there has not really been a huge amount of change in the management of asthma. In fact it was recently in the press that many people in the UK with asthma do not receive the basic asthma care as recommend in the guidelines for the management of asthma. In fact even I don’t have the correct recommendations in place. The three main ones are: a yearly inhaler technique review, a written asthma action plan and a yearly asthma review. I do have the yearly (often more than yearly mote like monthly or weekly at some points) review but I do not have a personal action plan despite asking my consultant for one on several occasions. I have also not had my inhaler technique reviewed- I have had the odd pointer from one of the asthma nurses at the Sick Kids!!! It must be really hard for those who are not as assertive about their asthma or unsure about asthma to have the confidence to ask to have these recommendations put in place. I feel like I am asking a brick wall often.

The PPI group were really lucky to have a slot in the ASM to speak and present to all those present at the meeting. I was able to update on what has been happening in SPEAK Asthma (the children and young persons group within AUKCAR) and the opportunities we have had as a group. The highlight for me being that one boy chose to come to a SPEAK Asthma group session rather than meet the All Blacks rugby team- I know which one I would have preferred!!!

It is a really tiring meeting as it is early starts and late nights but I really love going to them and it is so worth it. Being able to be part of such a fantastic community of researchers who are dedicating their lives to improving the lives of people with asthma. The particular part which I can never get over is how we as PPI members are considered as colleagues or equals to all the researchers and members of the centre rather than being a meer patient who is there for a tick box exercise rather than being a valued member of the team. I never feel shy to express my opinion or ask questions when at these meetings.

A particular highlight from this meeting was seeing how the PhD students who started their PhD’s at the outset of the centre have progressed and some have even submitted their thesis and only have their final interview to go. Seeing the growth and confidence in them is so rewarding and how passionate they are about asthma but also the impact that the PPI group has had. They are all so grateful for the help they received from the PPI group.

This year we had two awards for excellence in patient and public involvement which were awarded to 2 PhD students who I have had the pleasure of working very closely with so seeing them be rewarded for their efforts is fantastic. They both really understand what PPI is and the value of it to research.

There has been a lot of learning to take away from this meeting and tasks I want to do to try and expand the PPI group and give other people with asthma the same opportunities I have had.

The impact that research has really does make a difference. This was the focus of the meeting but I looked at impact from a different point of view. The majority of the people at the meeting would be I think looking at impact from how it has changed statistics of asthma, or influenced policy, of helped make a clearer framework for diagnosing asthma. For this impact to be made from research can often take many years. They say it approximately takes 9 years from research being completed to policy being changed. But for me the impact is much more and has happened a lot quicker. The impact is that it has given me hope. The more involved I am and the more research I am able to help with the greater positivity I get about having this horrible disease. For me there has not been a huge improvement if any in my asthma but I feel more positive about having asthma and know that there are so many people working so hard to try and improve life for those with asthma. I think for me the key thing and I cant say it enough is that you can do PPI whenever you want and wherever. One of the AUKCAR members said that they were awake at 3 in the morning and saw my email come in. I often do some PPI stuff if I cant sleep, or when I am in hospital. It does not have to be done in a university or meeting room.

It is exciting to see what research will come from the centre in the future and I hope we do get funded for another 5 years so there is chances of real change in asthma care and asthma stats do improve.

Recovery

With each hospital admission and each trip to critical care it is taking more mental strength than ever to get back to base line. I think with this past december and a few traumatic things happening including the death of my granny and also the death of a friend who suffered from brittle asthma too died in her sleep very suddenly and unexpectedly. Having brittle asthma does put you at a higher risk of having a fatal asthma attack. The attack I had just recently which put me in the high dependancy unit was described as being not quite as life threatening as my previous attack was. The consultant who said this does know me and was trying to make me feel better as I was feeling pretty down about being not just in hospital but in the high dependancy unit for new year. As the nurse said it could have been like 2 years ago when I was in ICU and didnt realise it was New Year until the 3rd of January so I guess this one wasn’t quite as bad.

The comments of the Dr have really stuck with me more so than normal and I think it is because with each attack I get over it is taking longer to recover, and I do feel that with each time there is that little bit more freedom taken away wether it be through medications, ability, work, travel. It may have been meant as a positive but with knowing so many people now who have died of asthma and not just any asthma but the same type of asthma I have is really scary. What scares me more is the relationship I now have with my consultant who despite me writing, emailing, calling has not addressed any of my concerns. Even on previous discharge letters there was requests for a plan to be put in place, follow up with immunology because of the allergic reactions I have been having and various other things. For me it is embarrassing when I am asked by other consultants who see me acutely and ask why nothin has changed and I have to say because my consultant doesn’t think anything needs changed. I am so fortunate that I have fantastic friends who have helped me a lot with my asthma, but also my own knowledge of asthma (but dealing with your own condition is a bit different from text books) and the support of my GP surgery and asthma nurse there who are happy to support me until the time comes and I find a team who can manage my asthma and allergies well. Part of me wants to move back to Southampton and see my old consultant who would drive up from the Southampton hospital and see me in Winchester hospital and thats not something that happens often and at the time I didnt realise the significance of it but now I do and am eternally grateful for his support. I am hoping that perhaps they may agree to see me but will just need to wait and see. Sometimes as a patient we are the best judge of how we feel and what our bodies need to function so for now I am going to need to listen to my body drop my steroids or up them as I need and get myself through until I can get a better idea of what is going on. The only benefit just now of being on high dose steroids is that I am not having nearly as many allergic reactions as I was having!!!

I am really looking forward to getting back to work. Getting back to normality and back to doing what I enjoy. Its odd I am looking forward to the feeling of being tired because I have been busy at work rather than exhausted because all I did was breathe and not do much with my day.

There are good things happening though there is the AUKCAR Annual Scientific Meeting in Bristol, SPEAK Asthma things, then a Research Nurse open day which I am attending, along with various other things with Astra Zeneca. So there are lots of positive things to look forward to.

Scared of running out of energy.

This is how 2018 started for me:

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(Yes they are TED stockings to prevent DVT’s and yes I do know I don’t have them on properly but I was so hot and bothered that I couldn’t stand them up properly. I even agreed to wear a gown which I never wear if I can get away with it!!)

After a fairly tricky December with various things going on the adrenaline ran out and the day after my Granny’s funeral I just felt awful. I didnt think it was anything that bad so spent the day in bed, but by the next day I struggled to walk to my kitchen from my bedroom which is 8m away. I got myself back to bed and get horrendous. My heart rate was up at 170-180 and I new I wasn’t going to be able to sort this out at home. It was a trip over to the Royal Infirmary where I got to welcome in the New Year in A&E fighting for breathe and waiting to be stable enough to get transferred to the high dependancy unit.

The experience in A&E was really positive other than a small scare with actichlor in the resus room but we managed to avoid anything major happening and there was no reaction as the actichlor use was halted!!! (in a previous admission I had a very bad reaction to actichlor cleaning stuff and ended in critical care as a result). The nurses and Dr’s were so caring and listened to me. It was a consultant on who has looked after me before and knows my reluctance to go to critical care unless I absolutely have to, and was understanding about the issues with getting blood gases, even peripheral access and bloods let alone arterial blood. Having someone take a lead who works with the patient makes the experience a lot easier and explaining why they were doing what and what they expect from it. I could tell fairly quickly after the first lot of IV magnesium and back to back nebulisers that this wasn’t going to correct itself that quickly and I knew that the A&E staff would be talking to critical care and I would be reviewed by them.

I could hold my own and despite starting to feel tired (when I say tired I don’t mean that I could do with a nap but the physical exhaustion of not being able to keep breathing) but was moved to critical care unit to be treated where I stayed for a couple of days. I hate being there- not that it is ever fun to be there but its the thought that you are there so if anything happens they can act on it quickly, you have the potential to get worse but at the same time being there is a comfort as you know you are safe and if something was to happen then you would be caught quickly not get too bad. This bit was all ok and I felt safe and in safe hands. It all changed however when I was moved to the respiratory ward.

The first night in the respiratory ward I felt ok. I was in safe hands, I could control my environment, I could control what I was exposed to and what my body needed this was because I was in a side room. It never lasts long staying in a side room especially with the huge number of flu cases coming into the hospital. So naturally the next day I was moved into a 4 bedded room to allow for flu isolation. When the change nurse told me I was being moved I said I understand why I need to be moved however there is a risk to my own health with being moved as last time on this ward when I was moved into a 4 bedded room I was exposed to triggers by another patients relatives and ended up in intensive care and once back out of intensive care I was reviewed several times by the ITU drs due to further exposures. Naturally I was apprehensive about this happening again and did say to the charge nurse about this and asked that there could be more awareness about who enters the room and limit the products used. I wish now in hindsight that I had stuck to my guns and refused to move because of course the charge nurse did not pass the message on- my opinion is that she thought I was just being fussy because I was being moved out.

Anyway I was moved- a patients visitor who also had children running round the room, people stinking of smoke and about 6 people around her bed meant my chest got worse. Not the children running around but the relatives with the smoke. This is the point at which I got scared. I was already exhausted and getting up to the bathroom was hard work but I was managing it and able to pace myself because I could control this. I could not control the visitors who selfishly didnt think that coming into a respiratory ward might be a good idea to not smoke before coming in incase they cause a problem for other patients. I am lucky in that I can do my own treatments so did some treatments and decided I needed to get out the room and keep myself safe. That didn’t go to plan and I was caught by a nurse on my way out the room and was told I was too wheezy and unwell to be walking around the ward. I tried to explain that I didn’t want to be in the room but I was told I needed to be on my bed and have some nebs. I was given a surgical mask to try and help protect me from the irritants but not sure how effective that would be.

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This was the point I was terrified. I felt like I was being locked into a cage and exposed to my worst fears. I had no way out and no way to protect myself. My other fear was that last time I got so tired and was so exhausted I just didnt think I could keep fighting to breathe. Last time I was in a better position when I went down hill and had had more rest in the run up to the downfall but this time I was only just out of critical care and really didnt know where I would find the energy from to fight this one and with the trigger still present.

I didnt want to be a pain in the neck and tried to explain this to the nurses through wheezing and gasping for breath every few words. Thankfully the other charge nurse came to speak to me and was understanding to my fears and he got the Dr’s as I wanted to get home to be in my own environment where I could control pretty much everything and as all my access had failed they wouldn’t be doing any IV treatment so I was on nebulisers and felt I would be safer at home. He stayed with me while the Dr’s were there and they explained because I was not even 24 hours out of critical care that I really couldn’t go home and be safe because of how quickly my chest goes off. I understood that and did say that I wouldn’t go against they advise and wouldn’t be signing me out but I wanted them to understand my fear as I was just so tired I really didnt think I had the energy for another fight to get on top of my breathing.

It is so scary when you just don’t think you can continue doing something. It is a fear you cannot explain to anyone. It is a terrifying. You can do nothing to get away from it, and nothing you can do can make it better until the medication works. You don’t know how quickly the medication will work and how much it will help as each time is different- some attacks respond very quickly to treatment and other times it doesn’t.

Thankfully things were ok and I did get on top of things and seeing a registrar I know and who knows my chest he listened to me and thankfully despite the drop in peak flow and need for a few more nebulisers than normal over night I was allowed to get home as they felt it was safer for me to be at home where I can control my environment and control what I am doing and prevent myself being exposed to things which may cause my chest to get bad. I have clinic on Monday with my consultant so will be able to have chest sounded then and check everything is ok.

This admission has again thrown up thoughts to me about going to hospital- risks vs benefits which in some ways scares me that I have these thoughts because I know as a nurse and also as a life long asthmatic you don’t take a gamble about not going to hospital. You go to hospital if you need it- asthma won’t take your feelings into consideration and think it will just lay low because you dont have the energy to fight the attack or you have plans in the diary. I hate that I think at times when in hospital that I wish I had never come in because the experience has been so awful. The first 2 stages of being in hospital which by all means should be the worse (in resus and critical care) are actually the easier to deal with despite the stabs with needles, the fight for breathe, the fear, the inability to do anything for yourself compared with when on a ward and you can breathe a little easier, don’t get stabbed for blood or access lots and can get yourself comfy etc. Its the wrong way round and there needs to be ways of changing that and making it easier. Visitors need educated on how to be when they visit hospital- visitors know not to come to hospital when they have colds, nausea/ vomiting or diarrhoea that they shouldn’t come to visit people because of the risk they pose to patients but they think that smoke isn’t a danger which to many smoke is even more of a danger than sickness.

The start of the year has defiantly not been the one I had planned but it can only go up from here and hopefully this small blip is just that and is a wee blip and I can get back to work and doing everything soon.

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!!!