The Asthma UK and British Lung Foundation Partnership

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Back on 10th December the news hit the headlines that Asthma UK  are to merge with the British Lung Foundation (BLF). It was met online with mixed reviews particularly by fellow asthmatics. I think there was a concern that asthma as a condition might get lost because the BLF covers such a wide range of conditions but this is where the partnership comes in. Asthma UK will still be just that for asthma and the BLF will still very much focus on its conditions. The partnership will mean that some costs can be merged and each charity can release that money approx. £2million each year to go where it matters most- to help us who have lung conditions.

I was a member of Asthma UK in its previous incarnation “The National Asthma Campaign” and was part of the “Junior Asthma Club” (JAC). I remember getting the news that The National Asthma Campaign was to change to Asthma UK and wondering what it would be like. Would the children and young person’s part of AUK be as good as the JAC (bearing in mind to me the perk of the JAC was the balloon, pencil and newsletter you got quarterly as this was pre social media)? Kick Asthma was just as good- if not better, there was a message board and kick asthma residential camps!! When I first heard of the planned partnership I did wonder what this would be mean but have been reassured that it is going to be a good step.

From what I have read so far the following will remain: the nurse helpline, the research programs and the website. The nurse helpline and Whats App service is a huge asset to Asthma UK that really sets them apart from others. I have used the helpline and found the nurses so helpful and reassuring. At first I thought maybe my reason for phoning was stupid but was put at ease and was glad I called and spoke to someone instead of googling!! Things like this will remain.

What benefits other than releasing money will the partnership bring? Due to soaring costs and being a relatively small charity Asthma UK could not sustain running their main office and then satellite offices in Scotland, Wales and Northern Ireland as well as funding the research and support for those with or affected by asthma. It was a hard time hearing that the satellite offices were to close but this new partnership offers the opportunity for bases to be built in Scotland and Wales again through infrastructure already established by the BLF.

It is a really exciting time and I am really pleased to be involved in so many projects with AUK and separately with the BLF too (I joined their patient involvement group quite a while back). Everyone knows someone who has asthma or lung disease yet both charities are chronically under funded. If only we had the same money that Cancer Research UK or the British Heart Foundation has then we might be able to make headway in conquering lung disease but this partnership is a step forward to save some more money that can go back into helping us.

What is going to happen next?? We will need to watch this space but in the mean time I need to prepare and think about what I am going to do for my first week of The Blow It Away Challenges.

 

 

2019 the good, the bad & the ugly

With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here .

My thought for 2019 was:

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

Well I guess some of it is correct but I am pretty sure when I wrote that I did not think I would be in the position I am now in, it has not been all bad though!

I have focused on trying to improve my health. I made decisions and took steps I never thought I would to really put my body first. I gave up working in the hospital to try and get my breathing better. To start with this was going well but after a few very traumatic asthma attacks my life has been changed and Ia have been left with more permanent damage and had to come of biologic treatment as a result. I am working hard though to over come this. I am determined I will get my independence back and be able to walk without a stick. I may not get the feeling back in my leg but I can work with this. Along with work I decided to not travel to various things mainly lacrosse because I felt I would not be supported and I would not be able to prioritise myself.

I have continued coaching lacrosse at schools, universities and with Scotland. I gave up working with the senior team and focus on working with the goalkeepers in the U19 set up which has been so rewarding. The U19 also brought me all sorts of things back from their World Cup which I was gutted I couldn’t go to- mainly due to poor communication from the seniors letting me think something different but then it turned out I was in hospital too for it. I am looking forward to this year and being back with the U19 Scotland team. I am still coaching at schools and picked up a 2nd team at Edinburgh University so now coach the 2nd’s and the 3rd’s. I am loving coaching and find it so rewarding.

Research and advocacy as always has been a big part of the year. In fact travelling to a huge advocacy conference in Dallas was life changing. The HealtheVoices event was something else. I loved every minute of it. I made so many friends and realised that I am not alone in what I am trying to achieve. Speaking about your own experiences and how to navigate living life with a chronic health condition is beneficial for others. You can make changes even if they are small. I will be forever grateful for my time in Dallas. I also had other events where I was presenting including some pharmacuetical internal events, wider NHS events where I made some great friends and we are going to try and pull off some great things this year, went to Madrid for the European Respiratory Society Congress where I had a poster accepted for the patient day, presented a poster at the AUKCAR ASM as well as some other virtual events too. It has been busy and I think will only get busier this year. I have been able to write for a pharma company who have a website called Life Effects where I can write articles about my experience of living with severe asthma. Off the back of HealtheVoices I became a PEARLS Ambassador through the work of Rick Guidotti which has been great and have got to know some of the other ambassadors too.  So far I have several events planned for 2020 that I am speaking at and I am sure there will be more as the year goes on.

The biggest part of this year has been getting Ghillie. Ghillie has been life changing. I cannot believe that I got him in April. I cant imagine life without him now. He is achieving so much and is always there for me. I will do a post just for him to update on how he is and what he is doing. I never thought he would be as good as he is now. He can be a total monkey but then when I am not feeling good or am struggling he is there to comfort me and help me with things. Topping the year off with him being a feature in a newspaper article all about what his role is as my assistance dog.

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What are my hopes and aspirations for 2020. I want to continue as I have with 2019. Focus on my health and do what I need to do to ensure it can be the best it can be. I am sure like with 2019 there will be hospital admissions, hard times, illness, frustrations but I can over come them. I just need to be patient and work my way through things. I want to grow my toolbox of skills that I can use to better myself and use my experiences to help others. My friendships this year have suffered a lot- mainly because I have struggled so much and been so unwell that I cant attend things so I end up bailing on friends and they get bored with me always cancelling so don’t invite me to things anymore. I want to try and change this and make a real effort to go to things. I value my friendships so much and don’t want to lose anymore.

2020 is going to be a year of positivity, focusing on finding my best self and feeling content with life.

I hope everyone has a fantastic 2020.

Live the life you want to live.

Getting it right for a newly diagnosed asthmatic.

Having a conversation with a friend this evening and I was so shocked to hear about her recent experience being diagnosed with asthma. A prolonged cough, wheezing and breathlessness the GP was unable to get on top of things so she was referred on to the hospital to see what was going on. Lung function was not too bad but a very high exhaled nitric oxide test resulted in a diagnosis of asthma.

My first thought was that it was good as she had been started on a preventer and reliever. I didn’t think to ask anymore questions really. She was finding her chest much easier after using the preventer for a few weeks and had very little need for her reliever.

I had made the assumption that once diagnosed she would be given asthma education, told about what signs and symptoms to look out for, what to do should you feel unwell and above all be shown how to take the inhalers both of which are meter dose inhalers (MDI) or the skoosh down inhaler that most people will think of when they think inhaler.

Anyway tonight after a quick question I discovered how badly the diagnosis and management was done. I realised that no asthma education was done, no inhaler technique and she had to ask for a spacer to use her inhaler with as one was not prescribed in the first place. I was horrified that she had not been shown how to take the inhaler. It is an MDI notoriously the most difficult inhaler to get the correct technique and the correct dose into the lungs!

It is so shocking that still new people are being diagnosed with asthma and not given the correct education or support. I am more than happy for friends and anyone really to ask me questions about asthma but surely it should be the asthma nurses or GP’s that give this information when diagnosing. Asthma is in the press enough just now as the asthma death statistics in the UK seem to be getting worse not better and it is among the mild to moderate asthmatics who are dying and most likely due to one of a few factors:

  1. poor inhaler technique
  2. not regularly taking there inhaler as prescribed
  3. not knowing the signs to look out for and take action when asthma control is deteriorating.

I keep going that the research being done will soon filter down into actual practice and asthma management will change. Time spent at the start can help reduce work load in the long run.

Asthma UK has a variety of different documents that can be downloaded to help asthma management and there is no charge so really there is no excuse for people with asthma to not be given the asthma action plan personalised to their needs.

Basic asthma care is essential is we want to achieve the aim of zero tolerance to asthma attacks.

 

Asthma Death in Children

There is so much research into asthma just now looking at a cure for asthma, better management, getting asthmatics to comply with treatment better but research into asthma death, often a taboo subject to talk about is vital to make any change in the shocking asthma statistics.

Ann an children’s asthma nurse specialist is also one of the PhD students at the Asthma UK Centre for Applied Research. Her PhD is looking to speak to parents of children who have died from asthma.

The importance of this I think is two fold.

Initially the whole concept of this PhD came from one of the Patient and Public Involvement Leads at AUKCAR whose own daughter died from asthma. Having a PPI member come up with the research idea and the centre then backing it really highlights just how much AUKCAR values the patient and public group by implementing project ideas that come from them.

Secondly this PhD is so vital. Only a few months back it was revealed that across Europe, the UK has the worst rate of asthma deaths and a rate that we all hoped would improve after the National Review of Asthma Death (NRAD) was published in 2014. However this is not the case.

In the UK death is very much a taboo subject. People don’t like using the term death or died. You see the term passed away or lost- you don’t lose someone if they die because if you go looking you won’t find them again. Asthma death is just that and I know people who have had family members die from asthma also do not like the term lost.

For the first time research is being undertaken by an asthma nurse specialist who deals with a number of people with severe and life threatening asthma. Rather than speaking to medical staff, Dr’s and nurses Ann is going to be speaking with those directly affected by asthma death. Ann wants to speak to parents or carers whose child has died as a result of asthma. Speaking to you will mean we can learn from your experience and make a change for the future.

Have you been affected by asthma death in the last 10 years (in or after 2008)? Has your child died between he age of 5-24 and you were there with them. Would you like to speak to Ann and help make a change for the future?

All you need to do is email Ann: ann.mcmurray@ed.ac.uk or by phone/ text on 07976582297. You will have a single face to face chat with Ann in a place that you are comfortable which will last no longer than 2 hours.

The study has been reviewed by the West of Scotland Research Ethics Committee 3 (WoSREC3) and Patient Public Involvement volunteers of the Asthma UK Centre for Applied Research (AUKCAR).

 

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!!!

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.