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 .

 

 

Being a Health Advocate

and how does it differ around the world??

Last April I was in Dallas Texas attending the HealthEvoices (HeV) meeting. A meeting for health advocates to meet and learn from each other. I went out there thinking I knew what health advocacy was but I was wrong to some extent.

A while back I put the question out on social media “What does health advocacy mean to you?” and I got some very interesting answers. What I found most intriguing was that there was a clear split between thoughts in the UK and then thoughts over in the US and Canada.

Pre HeV my understanding of health advocacy was essentially speaking up for yourself or family member to ensure you can get the best treatment, or best healthcare you can for your condition to ensure you can live as independently as possible and without too much interference from your health condition.

I also thought advocating for myself meant me speaking up to my healthcare providers wether it be my asthma consultant, asthma nurse, GP or whoever and tell them the parts of my treatment I did like, the parts I didnt like and also the things that were important to me in my life. I have spoken before about a period in my life when I didnt like the treatments I was on because of the side effects and the amount it intruded in my life so instead of speaking up and saying this I just stopped taking the medication and didnt say anything until I got really unwell. I thought I was wrong to tell my team that I didnt like the treatment they wanted me to be on because they were the drs after all!! It took for me to get really unwell to be able to tell the Drs why I ended up so unwell. They obviously asked me why I didnt tell them rather than just not taking the treatment, but I thought I didnt know as much and had to do as they said. From this point on I learnt that I could speak up for myself and say to the healthcare team that this was my views and opinions etc.

This is on the whole what those in the UK replied with when I asked about health advocacy.

In contrast others mainly (with some exceptions) from the US and Canada said that health advocacy was the sharing of ones own experiences and knowledge to help others and raise awareness for that condition. I think in the UK we would see this as raising health awareness.

Since attending HeV I have wanted to bring this contrasting view of advocacy to the UK and really advocate more for those with chronic health conditions and how you as someone with a chronic health condition can get the best information, and be able to live your life alongside your health condition and not put your life on hold because of it.

What words describe you?

Hero, warrior, asthmatic, advocate, inspiration, strong are just some of the words I have had people refer to me as recently. While I really appreciate them and am flattered I feel uncomfortable hearing them.

Some adjectives I can learn to adapt to such as advocate but others not so much.

The word health advocate a year ago is something I would never have applied to myself and a term I did not feel comfortable with. Over the last year I have got used to and embrace the term health advocate and will embrace it for years to come as that is what I am and I want to be the best advocate I can be not just for myself, or my condition but for all those with health conditions.

I think the reason I find some of the words so hard to accept is because I don’t want to be thought of as that. I have a chronic health condition that means I have to fight each day. If I didnt then I would be sitting at home doing nothing and that is not in my DNA, but also what life would that be.

Im also lucky this has been my life for so long that actually I cant remember what it feels like to feel well, every day I rely on a cocktail of medications but even that is not enough to make me feel “normal person” well.

I share my story about the ups and downs of living with chronic ill health to try and get more awareness about the disease itself, so others living with the condition know they are not alone and then also to show the real life struggle so that policy may change or new drugs might be developed so no one will have to go through the tough times that I have in the future.

When dealing with a condition that you don’t know when it is going to hit and take you out with an attack you need to make sure you are strong and not just physically but mentally as well. Getting through an asthma attack is as much about physical strength as it is mental strength. This mental strength which I put down to the way I have been raised but also my sporting background has allowed me to not only push through attacks but also push myself so that I get up each day and do something productive no matter how small it is as long as I have achieved something in the day I don’t care.

I am really flattered by some of the words people have associated with me and the way I have dealt with living with ill health. I don’t want to come across as rude or ungrateful as I know everyone is sincere and means it but recently I find it even harder to sink in as a condition I have always been able to beat is finally beating me and dictating my life more than it ever has before so to hear these words are more difficult.

Once I get back on my feet and know what is going on with my life then I will maybe be more accepting of the terms people use to describe the way I face situations.

What do you do when it all gets a little too much?

Ask for help.

Living with a long term health condition comes with many challenges especially when it is a condition that comes with unpredictability and triggers out with your own control. The challenge of trying to live a normal life is tiring and it can feel like a full time job just trying to stay well.

Recently I have hit that breaking point of what else can possibly go wrong with me. Asthma has ravaged my body, I am not just meaning the side effects from medication but the actual asthma and having attacks its self has also left its mark and continues leaving its mark from poor vascular access which has left me with a leg that doesn’t work properly, the mental toll on attacks and being in and out of critical care to most recently finding out that I have either had a hypoxic stroke during an attack or the other option is a lesion on my occipital lobe on my brain. An MRI scan is pending and will confirm but I have had a battery of tests to work out what it is. I am plugging for the stroke option as then at least it has happened and I have had no real adverse effects from it (but fingers crossed it is nothing at all- this would be super).

For the first time I have noticed the impact my poor health is having on just daily living. I recently went to the wrong out patient appointment in the wrong hospital, I totally forgot another appointment and then I cant remember if I have taken my drugs or not. I can guarantee some of the drugs I have taken because they are in my weekly box I get made up from the pharmacy. My brain just feels like it has been put in a blender, put on full and then poured back out. My leg then causes me to have multiple falls and this causes other injuries too!

This is not the life of a 34 year old that just had asthma!!!

I told my GP this today. Well she kind of guessed it as I tried to tell her about the eye hospital I just broke down. I could not help it but the news at eye hospital was the final straw. The year was meant to be focusing on getting my health back on track, getting control of my asthma so I can return to working in the hospital but now my body is in a worse state than it was when I stopped in Feb last year. At least last year I could walk without the need for a splint and a walking stick and could drive out-with the city!

So what to do from here?

My GP is really great and I am really lucky to have her. She gave me details for a new app that is out called Feeling Good. It is a program of tracks you listen to over a 12 week period which I think are similar to mindfulness. I will find out! I think once I complete the course I will write up a blog post for it. Anyone can get the app but some stuff has to be paid for unless you get a code from your GP surgery.

I like to try and keep myself busy as well. I take Ghillie out for a walk every morning come rain wind or shine I head out. This is really good as gets me moving, blows the cobwebs away and exercise releases endorphins so you get that little bit of positivity from it. Also I love seeing Ghillie running around having fun with the other dogs and I have made a few dog walking friends too- everyone is a creature of habit wether we think we are or not.

I need to remember that whatever is going on I am not being affected by it. Apart from some loss of my peripheral vision I have no other issues. I do need to acknowledge that my body is not ok but I have a lot of positives going on and events coming up that I am speaking which I am really looking forward to.

All these situations have given me some more drive to continue with my advocacy work as asthma is still so under recognised and not thought of as a disease that can be that bad. Asthma right now is destroying my body and I don’t want it to do the same to others.

Getting medication on time.

I am not actually sure what title to give this post.

I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses it can who are fully prepared for life as a staff nurse.

One thing that came up that has been preying on my mind and the more I think about it the more it bothers me. As the group was made up of a range of people age, gender, background, reason for being at the consultation. There were a few people there representing Parkinson’s- either as someone with Parkinson’s, a carer or someone who works for Parkinsons UK.

The issue of medication came up in conversation and it felt like some had a bit of an agenda as they kept going on about how people with Parkinson’s when in hospital must get their medications the right time otherwise their can be negative effects if it is late. This was a statement that was repeated many times stating that the medication often had to be given out with normal drug rounds.

It felt like to me that those with Parkinson’s,their medication was more important than other patients who need medication. I take medication which is prolonged release and has to be taken at specific times which are out with normal drug rounds and must be taken otherwise blood levels drop and this can have a detrimental effect on my breathing and could cause an attack which may or may not end up needing intensive care.

What bothered me so much is that there was no regard for other people and their conditions and the medication that they are on. I know from experience of doing drug rounds it is very difficult to juggle everything but we do our best. Every patient is just as important as the next and every patients medication is just as important to them as all the other patients. If a patient was able I would ask them to remind me to come and give them their medication if it was out with a drug round or if able I would let them self medicate so they would get their medication when it was due. This can not always be done so we as nurses need to remember and we do try. I was thinking as a nurse if I went into a bay of patients and only did one patients drugs and told the others they would get theirs done in time but this patient needed their now. It would make me feel like I was selecting this patient and treating them differently to the others.

What I am trying to get across is that every patient is just as important as the next and everyones medication is just as important to them as the next persons. There are many medications which like the medication for Parkinson’s needs to be given at set times otherwise there is detrimental effects. I really felt like there was no regard for other people and their condition. Parkinsons is an awful condition and I have a good friend who has had Parkinson’s since the age of 8 but getting medication on time is just as important for us as well.

Im not sure if I am saying thins properly and if its making sense but everyone is just as important and medication  being on time is no more important for someone with Parkinson’s than someone with diabetes or asthma for example.

As a patient I advocate for myself. I ask the nurses if I can self medicate that way I remove the anxiety that can develop if I am not able to get medication when I need it. For example if my chest is very wheezy I am able to put a nebuliser on and then let the nurses know, or if my prolonged release theophylline is due I ask the nurses for it or if they are doing a drug round ahead of time I ask if they can leave it out so I can take it when it was time. Nurses try their best and do what they can but we as patients need to advocate for ourselves to make sure we get what we need when we need it but doing it in a way that is not being disruptive and demanding.

I hope I have not come across as disregarding people with Parkinson’s and the importance of their medication as I know it is important but other medications for people are just as important. I always worry when I attend these type of consultations when there is a few who seem to have an agenda or dominate conversation.

I am going to leave this now but would appreciate others thoughts on this post as it has had me thinking a lot.

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.

 

 

One of the more unusual side effects of prednisilone

or at least we think it is. Otherwise it is just my body being weirder then it already is.

After over a decade of being on oral steroids I thought I had come across most of the side effects. I have not experienced all of them but have heard of them or at least I thought I had.

Prednisilone suppresses your immune system making you susceptible to anything and everything that is going. One of the big ones we get warned about is chicken pox and shingles. If we are ever in contact with someone who has them we need to get in touch with our medical team. Over the years I have had to do this a few times and received treatment to protect myself from getting either virus too. The treatment is not fun. It is injections of varicella zoster immunoglobulins which is essentially 10mls roughly of a vaseline type substance into your muscles. Then some acclovir as well if needed. Each time i also get a blood test to see if I have any immunity to either virus. My blood tests always come up negative meaning I have no antibodies to it. I have also had the shingles vaccine which is the odd part. Despite having the immunoglobulins and the vaccine I still have no anti bodies when I should.

I get questioned so often if I am sure that I have had chicken pox (my parents assure me I have my Drs on the other hand say that because my bloods say I havnt!!) then I also get the question if I actually had the vaccination to it. Sometimes I think people must think I am bizarre but it is my body just being odd and I do think it is due to the prednisilone. It does things to your body that you would never think a tiny wee white pill (or 8) could do. The benefits the drug has is that it keeps me alive but the side effects are unreal.

When studying for my nursing we all had to have the Hepatitis B vaccine which is a course of injections given over a period of time with a blood test to see if you have taken up the vaccine and then depending on that blood test a repeat course of the vaccine or a booster dose. Well after the first course and the blood test I was once again being questioned if I did actually have the injections- of course they knew I had the injections because the stickers off each syringe were in my notes but my blood test results were as though I had never received any injection. So I had a repeat course and another blood test. The result of that blood test was exactly the same as the first time so we decided we would leave it there, when I say exactly the same I mean 0.

After my recent experience with chicken pox and shingles I was thinking back. I ended up with flu after having the flu vaccine I think it was when it was swine flu (mainly coz I remember my mum visiting me in ICU dressed up in the mask, gown, gloves etc). All of these things have happened when I have been on long term oral prednisilone. I am not sure what my vaccine up take was like as a kid because you don’t really test to check a child has had a response to a vaccine, you just assume they do because they got the injection. I do want to speak to someone when I get the chance to ask about this because I am concerned that my body cannot fight like it used to, I just don’t have the physical strength so I really don’t want to be picking up something that I was immunised against as a child. I am hoping that these recent vaccines have not worked because of the prednisilone and not because of any other autoimmune thing that my body has.

I would be interested to hear from anyone that has had similar experience to me with vaccines and no uptake to them.