BLF-AUK Respiratory Action Plan Meeting

I was recently at the first event since the partnership of  Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this event as I didnt know anyone however as soon as I walked into the room I spotted a familiar face Dave from Chest Heart and Stroke Scotland who had attended a PPI event I was teaching at. As more people arrived I then saw Toni (a fellow patient) who I got to attend the Garden Party with which was good too but actually by the end of day I was able to speak easily to so many people and have come away part of a whats app group.

The table I was on turned out to be one full of severe asthmatics (not done on purpose all by chance). As we got talking it was amazing speaking to others who have had the exact same experiences as I have and the way you feel as well. I think the biggest thing for me was that you would not be able to tell that any of us were seriously unwell and that 2 of us have had far too many intensive care stays to count.

One thing that did come up several times in conversation was around the term severe asthma and what it means. We all came to the conclusion that severe asthma is almost a totally different condition than asthma is but this is for another blog post.

The main point of the meeting was to discuss certain points of the Respiratory Care Action Plan which has been drafted by the Scottish Government however they have one huge fundamental flaw. They did NOT consult with those who have or are affected by respiratory conditions, so the BLF-AUK held a meeting to discuss key points which need patient in put on. In the room there was a mix of people with different respiratory conditions.

One part of the meeting that I found frustrating was that it became a bit of a platform for people to spout their complaints about their GP and how they never get to see their GP or if they want to see their GP they have to wait. This is just the way it is now but moaning at events like this is not going to get anything changed. The GP system is not ideal but there are so many who are not using the GP correctly like with A&E so that others miss out and suffer as a result but a consultation on a action plan is not the time to complain.

Asthma I think and I may be wrong is unique amount respiratory conditions because unlike other conditions which mainly affect the older generation asthma can affect anyone young or old. In the room everyone was much older than those with asthma. The other thing that made it unique is that unlike COPD asthma is not really a progressive disease. It goes through phases of being controlled and uncontrolled but generally won’t continue to get worse as you get older limiting your ability to function. So the needs of those with asthma are very different to those with a constrictive airways disease compared to a revisable airways disease. I think those with asthma in the room were able to speak up and give a good balanced argument for our opinions and why us as asthmatics think as we do.

I did get very frustrated when asking a few questions to be interrupted by those with COPD who clearly has no understanding of any other condition outside their own so would butt in with their opinion and how I was wrong. The one that got me really riled up was discussing spirometry. I asked what they meant by spirometry to the facilitator as it was a broad term and encompasses a number of different tests. The context of this question was on the background of spirometry being used in primary care. This person jumped in and would not let me explain what I meant  and told me that spirometry is blowing into the machine when you sit in the glass box. I was wanting to know if they meant basic lung function by doing speak flow, or FEV1 or more advanced lung function tests given that the context is primary care. I was just really annoyed that some people were not given the chance to ask their questions or finish asking their questions without people butting in. The whole purpose of consultations and being involved patients and the public is to listen to each other and accept each others views wether you agree with them or not particularly when it comes to a variety of different conditions especially when we are all experts of our OWN condition but not in other peoples conditions.

The whole day was really good and I really hope the BLF-AUK got a lot of helpful information to take back to the government about their action plan and hopefully make some changes now that patients have been consulted. I look forward to seeing the result and to see the finished Respiratory Action Plan. If anyone is interested in giving their own feedback on the action plan they can do that here .

 

 

Patient Centricity

For the past 5/6 years I have been given some fantastic opportunities and invited to be part of a number of very special events and a few events which are still to come.

Yesterday was one of those events.

Rewind 6 years and I would never even have thought I would be at ease public speaking let alone sitting in a room with a selection of people from big pharma companies listening to me speak about involving patients across the value chain working in partnership and not in a hierarchy.

It was thanks to one of the Scotland lacrosse team who suggested me to attend the event. It was a pan European forum for Patient Centred Pharma. A totally new challenge for me. I have for a few years now worked with Astra Zeneca and their patient partnership program but this was a number of different pharmaceutical companies together in one room to discuss and share their views of what works, what doesn’t work and the challenges they have faced. Myself and another patient advocate who refers to herself as an independent advisor when it comes to patient advocacy and engagement (I have borrowed the term independent advisor for myself due to the number of different groups I am part of) were invited to speak about our thoughts on patient involvement and insights.

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The day before the meeting I travelled to London. It was great as I travelled by train and in first class. It made the journey so much more comfortable to have some leg room and space along with the complimentary drinks, snacks and meal. Once in London we had a dinner before the meeting the next day. I would really recommend this to anyone who is holding an event that you will have patient representatives at as it really put me at ease and get to know the people who would be present at the meeting. Not only did the dinner break the ice but it was phenomenal. In the most amazing restaurant right on the River Thames followed by a night in an equally fantastic night in the most luxury hotel I have ever been in. The LaLit hotel was out of this world. Gadgets galore int he room, so much so I struggled to work the phone. I gave myself a fright with the heated toilet seat but also a toilet with a variety of different buttons to self clean, deodorise and so much more. It was very apt that the room number I had was 007 as Bond was known for his gadgets!!! Enough about the hotel and more on the meeting.

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Again a venue looking out onto the River Thames with Tower Bridge, the Tower of London and London Bridge as my view for the day it was hard to concentrate at first but once down to business I was able to focus on the job at hand. Once myself and the other patient representative had spoken about the value we feel we bring and how we can aid pharma companies business and enrich their products and knowledge it was mainly round table discussion from the various companies and how they develop their patient centricity. It was a range of those new to patient centricity and partnership to those who have it well established and embedded in their company and strategies.

As with any of these type of events I was nervous to begin with and had to take a deep breath and take the leap to voice my thought or opinion. Participating in the discussion is very different from giving a talk. When giving a talk it is your talk, your knowledge and your time. In discussion it is more about challenging and responding to other peoples comments or statements which you may or may not agree with. What you say may be challenged and you need to justify your belief.

One part of this which I find hard to get my head round I guess and that is the money aspect of it. To me I am the patient and want to see the new treatments developed. It is as simple as that. I don’t need to worry about the financial side of it, that is up to the National Institute of Clinical Excellence (NICE) or the Scottish Medicines Consortium (SMC), they decide what costs too much and what would be of most use. In pharma it is a business, they need to make money to continue operating. They need to be able to justify costs and show where value is and what is of value to them. They also need to look for profit. As a patient I feel conflicted because I don’t care about profit. Part of me thinks they are looking for profit off the back of people being ill but then they are a business and how can they move forward as we move towards precision medicine being the norm rather than more generic medications to treat a group of symptoms rather than the cause.

A very different experience from anything I have done before. The people who attended were fascinating to speak to and find out where their drive for patient centricity comes from. I really hope they all found it helpful having patient representatives present and able to speak to us. Healthcare culture is changing and it is such a different relationship from what once was the patient did as the Dr said, it is more of a 2 way conversation and discussion about a treatment plan and what would be the pros and cons. It is a very exciting time and I hope I can continue working in this area of healthcare and industry in the future.

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.

NHS Research Scotland Away day!

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

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

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

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

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

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

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

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

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

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

Any questions just ask!!!!

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Asthma Rule 1: ALWAYS have your reliever with you.

On twitter recently you may have seen that I had a small rant about something that happened the other day and I am still reeling over it. I think what got me most is that how are we ever going to change attitudes towards asthma if those with asthma are so cavalier about it.

I was at a Design Informatics Collider with a variety of industry partners, researchers, clinicians, researchers and patients. The theme of the event was ‘Design Support for Asthma’ and what can be done to help asthmatics or those who care for asthmatics which in turn would help asthmatics. There was a group of us patients there from the patient an public involvement group at the Asthma UK Centre for Applied Research. I have met most of the patients before who were there and as always it is great to meet new people in the group too.

So what happened??

One of the patients there was chatting about their asthma and their asthma control but then announced and announced proudly that they had not brought a reliever inhaler with them for the trip (baring in mind they came up by train and stayed overnight). They had their preventer inhaler but stated that their asthma was so well controlled that they knew they would not need their reliever. I was gobsmacked by this, and even quite angry about it especially the pride that the statement was delivered with.

Asthma is such a dangerous condition and there has been so much in the press recently about how many people die from asthma, how under funded asthma research is and just generally how bad the asthma situation is. The national review of asthma deaths (NRAD) which was published 2014 highlighted just how dangerous asthma is and how it is those with relatively mild asthma that are at the biggest risk from death and this year the news broke that rather than there being an improvement in the asthma death rate it has in fact got 20% worse not better.

I feel really passionately that even if you are so confident in your asthma and asthma control as an asthmatic you should never leave without a reliever inhaler especially if you are away overnight. For me my inhaler is my security blanket. I always have a ventolin (reliever) in my pocket, even when in hospital and on oxygen and nebulisers I still have my ventolin in my pocket too!! Asthma is such a fickle disease and you never know when a trigger is going to cause your airways to react and tighten up. The reason that was given for not having a reliever with them was that the weather was ok and they would not be affected by any triggers despite saying in the next breath last time they were up they had to climb stairs and were in a really bad way after this- there was no guarantee that there would be no stairs this time round.

I think the main thing that got me was that being involved in AUKCAR and being a member of the PPI group you would think that those in the group are those who are proactive about their condition, wanting to set a good example and manage their condition to the best of their ability. To do this one of the key things is to have all your medications with you. It may end up that you don’t need it, but its better having it all with you and not require it then need your reliever and not have it. Asthma and our airways don’t stop and think that they better not tighten up and become symptomatic because your don’t have your inhaler. They are going to do what they want when they want.

I am still reeling over it and so glad that there were no members of the children and young persons group there because they are impressionable and may think that because someone older than them is not carrying their reliever with them so they don’t need to either. I feel really passionately that if you are part of a group and forward facing attending groups where there are a mix of different professions who are putting a lot of time, dedication and effort into a career of helping those with asthma then you need to be acting in a responsible manner and not bragging that you don’t carry a reliever inhaler because what researchers or clinicians are going to want to help asthmatics when those they are consulting with are not being sensible and taking their condition seriously.