Critical Care does PPI

Tuesday evening I had a fantastic time. It was the first meeting for the Critical Care Patient and Public Involvement Group in Edinburgh.

Patient and Public Involvement (PPI) in Scotland is no where near as organised as it is in England and funding is woeful, so to establish and run a group is a huge undertaking but for us as patients it makes a huge difference. We see the dedication of the organisers to make life better for those in the PPI group.

I have been really privileged with this group as I have been able to help advise the group organiser and how to do it and was invited to speak alongside Allison who I do a lot of talks with for the first meeting. Having been involved in the set up of the SPEAK Asthma group, it was good to be able to advise on this one and work with the group lead.

It was great for the initial meeting to have a combination of patients, clinicians, researchers, advisors all chatting about involvement and research. What I did find is how difficult it is to define and explain PPI to patients but also researchers. It was clear some researchers thought PPI was more about patient recruitment than involvement but also that they have their clear idea of their research and how it is going to be done which is good however if this is their thinking then PPI is not going to work especially if the patients do not think the method of research is going to be beneficial. The key thing with involving patients in the research process is listening. You must listen to the patients and their views. You may not agree with what they say and think because you have research under your belt then you have the expertise but it is patients you nee to recruit so if those you use for PPI don’t think it is a good design then you can be pretty sure that your participants won’t be interested either.

However not all the researches were like this and some of their research has been really well thought out and they explained it in a manner that everyone could understand and get a real feel for the project. It is a real skill to be able to translate from academic speak to everyday speak so those who can they have the art!!!!

Having a unit like Critical Care want to set up a PPI group is really positive. Medicine is advancing so much and improving patient care and treatments. Patients in critical care are pretty unwell so often hard to speak to them about research and get them involved because when your there you are not in the best of health and research is the last thing on your mind. It was clear at the first group meeting though that the patients really valued the expertise in critical care and by them getting involved in PPI is them giving something back to the unit that looked after them.

The tricky thing is reaching out to those patients once they leave critical care or the hospital as even once out critical care and on a ward they may still not be feeling great so would not want to be given loads and loads of information as they are still processing what has just happened. If anyone reading this has ideas of how to gain more people for the PPI group (ideally in Edinburgh) please leave me a comment.

The exciting part is that there was such a positive response and watching everyone interact was great. A first meeting for anything is hard and you never know what to expect so for the organisers it has been a success I would say. It is sad though that they have had to put so much work in and I am sure many many hours of unpaid time to set up and organise such a group and event that it is not always possible for areas to do that or have the staff dedicated to setting up, running, facilitate and maintain a group.

The benefit is though that if the group can be advertised and grow then others might set groups up for their research areas having seen the positive impact PPI has had for others. The more groups then hopefully the more publicity and PPI may have more of an agenda in Scotland and research groups which would perhaps result in more funding and PPI groups can have a network across the whole of Scotland and all types of research can get enhanced by PPI and not just be a tick box exercise!!!

The Intensive Care Unit

I have written often about being admitted to intensive care or the high dependancy unit or being reviewed by critical care staff and it always something I have just sort of dealt with and not thought to much more about it. That was until last night. I couldn’t sleep for tossing and turning thinking about how many times I have been in ICU or HDU or had the threat of going there.

Why all of a sudden has it bothered me??

Yesterday was the first meeting of the Critical Care Patient and Public Involvement Group (which I will write more about in a post of its own). A room full of patients who have been in ICU or their relatives, Drs and Nurses from ICU and then researchers whose area is critical care.

Naturally when you have a group of patients together you are naturally going to ask how you are linked with the group and I guess what your story is. In the discussion part of it there were 2 other patients who spoke of their experience being in ICU and how it was awful, the worst time of their life and how the Drs and nurses saved their life because their life was in their hands. It was a traumatic experience for them and they have got through it. I heard the saying “surviving ICU” a lot.

“Surviving ICU” was what bothered me and kept me awake. I think maybe I under estimate how bad my asthma is or maybe how sick I get or how dependent on medical staff I am to get me better. I know that my asthma is severe and I know there are many more hospital admissions, HDU admissions or ITU admissions ahead of me and I think i sort of accepted this maybe. It was not until that group discussion that I realised just how traumatic it is, life threatening it is, and how it is not run of the mill to go in and out of critical care. At the time I was able to keep my emotions in check but when I got home and set up my nebulisers that it really hit me. The other people in the group had a one off experience, this is what ICU is meant to be like ideally a never experience but if it is going to happen then once is more than enough not once or twice a year sometimes more.

In my working life you hear about people going to intensive care, its not looking good for them or statements that you mainly go out ICU horizontally not vertically. I think for me I have always come out of ICU so would never dwell on the experience of being admitted. I cant say it is a pleasant experience not being able to breath and having the most toxic drugs that make you feel horrendous to make you better but it gets better, I go to the resp ward recover and get back home. It is how it goes and has been for the last 14 odd years.

So after that meeting and hearing others speak about ICU it has almost given me a fear. In the back of my mind I know there are only so many times you go to intensive care or high dependancy and get out but so far I always get out and sometimes bounce back but then get out again. I think it is the emotions that I could see on the other patients faces when they recalled their experiences that it hit me that maybe I don’t have the right emotion to it. The fear they had and the gratitude to the Drs for saving their life was clear to see. Its not that I don’t appreciate what the Drs do but I guess I just never wanted to admit that Im going to intensive care because its the safest place and I might just be that unwell that action needs to happen quickly. Every attack I have I am terrified that it might kill me and that asthma may just win the battle and Im sure I have surpassed that thought as it is very over dramatic and im young so it won’t happen but seeing younger patients have that fear of death and the unknown.

I have never really expressed my fears of my asthma to those close to me. I try to give the outward opinion that its fine, its life, its been long enough now I should be used to it. I would like to be able to have a conversation with people about asthma and death but would worry they think I am just being over dramatic and its never going to happen. Maybe I should though as a comment  that occurred really hit me and made me think about how those close to me feel and thought about my asthma and health. Recently a very close friend died, my mum was away, I was home but she read a text out loud and said “oh my god she’s died”. My step dad thought it was me that had died not the friend. This really hit me that if they hear something about someone dying they go to me and think it is me. I try so hard to keep well and take my medications etc but its still not good enough. I always knew they worried about me doing to hospital but never thought about the dying aspect of it.

What I find so difficult and I think it includes the whole critical care thing is that in the past I have been rogue with managing my asthma. I was young and didnt understand it and didnt want to accept it so I would increase medication so I could do something only to crash and burn and end up in hospital. That changed after a consultant had a go at me (they were just stern and didnt mess about but i felt awful so took it worse than had I been well) which I well and truly deserved but I stopped messing about and accepted not being well and accepted what I could and couldn’t do. The point I found so hard was that despite this change in behaviour and management I was still ending up in ICU or HDU but not having the good bit beforehand which I had before. To this day I still really cant accept the ICU or HDU admission for nothing. I get it if I was to go and play a game of football have a bad asthma attack and need critical care- I deserved it, I did something my body cant handle but now I try my best and still end up going there and that is the hard bit. Where before if I hadn’t been doing anything attacks would mean hospital and a respiratory ward where now it is resus, critical care and then respiratory ward. With this development what happens when it gets worse……

Lots to think about.

Patient Centred Care

I have quite a few different blogs in my head after my last hospital admission due to a variety of things that happened.

Where better than to start at the beginning.

It was the usual start= difficulty breathing so did I usual nebuliser treatments and thought I should probably call 999 as I wasn’t getting much relief. The call handler was great. I normally just hang up but she stayed on the phone with me until the paramedics arrived which was good as it took a wee bit longer for them to come so she was able to distract me from focusing on being scared that I couldn’t breathe.

The paramedics did their usual. Although my blood pressure was through the roof which normally happens but later on. I think it just shows that I had been struggling for a while given how quickly it went up but also how quickly my heart rate was going too. Apparently the Western General doesn’t take emergency asthma attacks anymore as they are not equipped (despite going there in February) so I had to go over to the Royal Infirmary which isn’t my favourite but as it turns out it was a good thing I went there. So blue lights across town which is something I can never get my head round, part of me would love to be feeling well when going across town with the blue lights to see where they go and stuff but to have blue lights is really not a good thing so not being able to remember it is not good either. I would prefer to get myself across town to the hospital without needing an ambulance or not require the hospital at all.

The guys in A&E are fantastic straight into resus and getting sorted out. The challenge of getting a cannula in started and once they got it in the radiographer who was less than pleasant trying to get me into odd positions and not sympathetic to the situation did her best to pull it out and almost succeeded but for the quick hand of the Dr.

I did laugh though as the Consultant who I saw first uttered those words all asthmatics hate ‘just relax and concentrate on your breathing’. I wanted to throttle him. He was a really chatty guy so I couldn’t at the time get a word in to say to him what I wanted to but after they got some magnesium, hydrocortisone and aminophylline running I was starting to feel a bit better and could talk a bit more. When he next came in I was able to wave at him and tell him about the BMJ article I wrote. He said he found it really good as he had never thought of asthma in that way and he thought that it looked so difficult for us to talk so we just shouldn’t. I explained that if an asthmatic didnt want to talk they probably wouldn’t rather than try to fit their words in around their breathing. There was a noticeable change in how he treated me after he read the article and was obviously applying new learning which s really rewarding to see.

The slightly negative part of the whole time in A&E was that they sent ITU to come see me as they felt I needed to be there rather than going to a monitored bed in the assessment unit. Thankfully an ITU Dr who has seen me before was the one to review me and gave me more time to try and get on top of things. I did manage this and was significantly better but was shocked when a nurse came and told me that I was going to Intensive Care. If I’m honest this freaked me out a bit. I had assorts of things flying round my head. I though I was doing better and I was wondering what they knew that I didnt, were my numbers worse, was I tiring and the adrenaline of the attack was keeping me going. I was quite upset by the thought of it. I said to the nurse I didnt want to go, who then got a junior Dr who told me I needed to be there. The junior Dr got the consultant who by this time was a different one from earlier as the shifts changed.

This is where I cannot thank the A&E Dr enough. I thought I was in for it and going to be told I was unreasonable, and didnt know what was best for me because the Dr walked in looking at me carrying a chair, shut the curtains and sat down. At this point I thought she was going to tell me I had to go to ITU and had no choice etc. I was so wrong. She sat down and asked me how I felt and gave me her rationale for going to ITU. But I was able to tell her my fears of going to ITU and just that I felt significantly better from when ITU came and reviewed me. But also I was able to share my fears about ITU. Every attack I have now I end up in ITU or HDU. I honestly thought this time I was doing better and didnt need to go. The Consultant spoke to the on call Resp Reg about me and my concerns etc. It was agreed that I didnt need to go to ITU and could go to a monitored bed but should anything change and I get a little bit worse at all then there was a really low threshold for me to be moved to ITU.

What I really liked about the A&E Consultant was that she was all about the patient, and what is best for the patient, and involving the patient in the decisions about their care. When first taken into Resus you don’t get a say in what is happening as they are running around trying to save your life and that is their sole focus rather than if you want that or the next but the move out of resus and into the high care area sort of signals the change in care and is a move when the patient can be involved in their treatment and have input into what they think best and have discussion with Dr’s.

I was and still am so grateful for the Dr who took the time to speak to me and listen to me about my concerns of going to ITU and why I felt I didnt need to go there. I understand that if I need to go then I need to go and ultimately if after that chat the Dr still said I had to go to ITU I would go as I am not going to go against what the Dr’s say but being heard and listened to makes such a difference.

As it happens I needed up going to Critical Care anyway but that was due to an anaphylactic reaction which caused my chest to deteriorate rather than just an isolated deterioration in my asthma.

I must say this really was an excellent example of patient centred care and when patient centred care is appropriate and when it is not.