Guest blog post: Why being a Volunteer is Important in healthcare?

And how to keep them happy and feeling valued.

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Hi, My name is Mark Hudson, You probably have no idea who I am, that’s ok I’d be surprised if you did. Olivia and I met in August of 2018 at an ICU steps Edinburgh event, Creativity in ICU recovery, it was my first speaking event. I was nervous as talking about what happened to me in ICU is not easy, it is bearing my soul, several people spoke at me. Note that AT me, an ex ICU consultant who basically telling me about what a patient goes through in recovery, arrogant right? Other spoke at me telling me why they where great, Dr Ramsay introduced herself but was very busy so during the event didn’t have the time to talk (which is fine there was a lot going on). So, who was the first person who actually spoke to me? Who treated me like a person, a person whose view was important? Olivia. I don’t have many friend but I make them fast, with me its all in or all out, I don’t have any middle ground. My health issues and nearly dying in ICU made some things clear to me, life is short and as such you should surround yourself with good people. I chose to surround myself with great people like Olivia.

I have only met Olivia one other time in the real world but I am happy to call her one of my best friends. Why I hear you asking? Because we have fought in the trenches of Critical Illness, we have battled ICU Delirium, we have had to deal with life long health issues and we have both made it through mostly intact. Ok so now to get to the point of the blog, I hear you saying thank god, a bit rude but that ok I forgive you 😉

I was given an opportunity to Volunteer after I completed my ICU rehabilitation clinic I was invited to become the peer support volunteer for the clinic it was a big deal to me as it was an opportunity to pay back for the people who saved my life and help to make those who came after me in ICU’s lives a bit better. A chance to make a real difference in peoples lives, this is the main reason why people volunteer in these types of positions. However, it is very easy to take them for granted, after all they are not paid so they are valued as, less right? Well no because you are being paid to do your job, they are giving up their time and experience. So how do you avoid this pothole, well you do somethings my team did with me, you listen to their input taking it seriously and weighting as equal to the other team members or greater depending on the subject. Also inviting them to any Quality improvement meetings you have and treat them like one of the team as they are not a guest they are very much in your team. Other things like remunerating for their travel is important too as why should they be out of pocket for helping you out.

I have now started doing what I call freelance volunteering inside my health board mainly on Delirium so far. This is where I am brought in to talk say at a conference or training session etc. Now these situations are trickier for the people who are bringing the Volunteers in because unlike my clinic experience, I am not part of the team. However, in this situation I am being brought in as an ‘Expert’ now this can be a problematic area as you are often viewed on as a free resource. No other expert would be looked at in that way, it is as if because you are giving your time up for nothing you lose position you become an almost inferior. This is the worst thing you can do to a volunteer because you will make them feel like a failure and not respected, which will make them much less likely to volunteer with you or anyone else for that matter. So, I hear you asking how to avoid this, its trickier, because there is not usually a pre-existing relationship it can be tricky. Here is my ‘guide’: if you are in a faraway or difficult to get to part of a building meet them at the front door; if there are other speakers or ‘important’ team members introduce them and say they have came to help you do x or have Volunteered to show us X it shows they are important; Introduce them before they speak and thank them when they are done in front of the group it shows their value to the group; and at very very least offer to pay any travel expenses because why should they pay to help you.

Ok so the serious stuff aside it boils down to is remember they are a human being put yourself in their shoes and see how you would want to be treated. Remember they owe you nothing, they do not need to help you, that is sometimes forgot. They do not need to give you their time, insights, wisdom or bear their soul to you. They are giving you a gift, its not yours to take or demand its theirs to give so remember that when you are working with volunteers.

Mark also writes his own blog which is well worth a read. Mark is also an avid poet writing some fantastic poems. I have been very fortunate and Mark has penned a few poems for me which I will post for others to enjoy too!!

Mark’s blog is: https://autoimmunedisorderjourney.blogspot.com

Twitter: @MarkThomHudson

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.

 

Getting over the stigma of wearing a mask in public!

It has been a busy few weeks with a number of trips down to London. Last year when I had a few trips to London there was a clear deterioration in my asthma when I was there. My peak flow dropped substantially and I was constantly feeling tight, wheezy and just couldn’t get my breath or settle my breathing. I took all the precautions I thought I could- such as increasing my treatment, pre medicating before going out and about in a bid to stop my airways getting more irritated. It was interesting to see the drop by almost 150 l/min in peak flow between arriving in London at night and the next morning it was down. It really did not take long at all. What did take a long time was getting my peak flow to come back up. It was not until I had been back home for about 5 or 6 days that my peak flow returned to normal. (The trip I am talking about to London was ironically a research meeting to discuss air pollution on lung health!)

Knowing I had and will have many more trips to London I knew I couldn’t expose my lungs to that level of irritation again and couldn’t afford to let my peak flow drop and need more medication to get back on track again. If I did not do anything then I would be on this rollercoaster every time I was in London or other heavily polluted cities and my lungs really don’t need it.

After some research I decided to purchase a Cambridge mask with a carbon filter in it to protect my lungs from the air pollution when in London or else where.

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I need to point out here that there is a lot of people out there wearing masks such as this or the vogmask which also has a filter in it but it is VERY important to realise that these masks will not protect you from bacteria or viruses. Often there are posts on social media of people wearing these masks in hospital to protect them due to suppressed immune system. They don’t work for that and the companies state that too. Only high grade surgical masks will protect from bacteria or viruses.

I was really apprehensive about wearing it and thought I would get funny looks, pointed at and comments made, but one fo the people I was with in London told me to put it on and my breathing was more important than what other people think. So I wore it and got on with it. I really was not sure how much it would help, if it would help at all or was it just a waste of money.

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Since purchasing the mask and wearing the mask when out and about in London I can say it has been worth spending the money. I was very skeptical and part of me still is as both London trips recently were very close together so I am not sure how much might be just that my asthma was not too bad. Once arriving in London the next morning my peak flow dropped by 50 l/min but it also stayed stable throughout my time there rather than moving around the place. I had some low grade breathlessness, coughing and chest tightness but nothing massively concerning that gave me too much cause for concern. Once back home my peak flow did pick up a little bit but I cant directly attribute the initial drop to London but I think what I can say is that wearing the mask with the filter did impact my lungs and kept my lungs stable. I have had 2 trips now with the mask and things have been more stable as a result.

I am still trying to understand just how much the pollution impacts my lungs but clearly it is as when wearing the mask there is a marked change from pre mask and a change for the better. Unfortunately I will not be able to avoid going to London as there are so many things down there with regards to research etc but using the cambridge mask has made a difference and has added a little bit more security for y lungs and reduce the risk of exacerbation as a result of pollution. I am not sure how much the pollution in Edinburgh effects my lungs but it might be something to consider and perhaps wearing a mask in Edinburgh night help too.

I cant reiterate enough though that these masks are not hospital grade and will not protect against all viruses and bacteria etc. It is a carbon filter. The website does say it filters bacteria etc but speaking with medical professionals and different lung charities they do not support their use for bacteria and viruses protection.

AUKCAR ASM NRS Talk

It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time yet. I say this often but AUKCAR has been life saving and life changing. I have no clue what I would be doing if I had not had that chance meeting that set about a series of events which has put me where I am now.

The annual scientific meeting held in London this year was a celebration of all the hard work and research that has been done to help benefit those living with asthma or affected by asthma. Asthma UK originally funded the centre for 5 years so we had to reapply for further funding for another 5 year period. It was announced during the meeting that we have been awarded funding for the next 5 years which is incredible.

I love the ASM’s because it is a chance to meet people face to face. The centre is virtual so a lot of the work is done via email or teleconference so seeing the people you work alongside is not a common occurrence. It also gives us the chance to meet other members of the patient and public involvement (PPI) group.

 

This years meeting I was speaking twice and presented a poster too. For the first time I was presenting about an academic bit of work on my own which I was a little nervous about but once I got up there it was not too bad (also the team who were part of the work were in the audience so had to get it right). The poster was also related to the piece of work too- evaluating the impact of PPI!!!

The final talk I was giving was when I fell to pieces a little. Not quite as bad as 5 years ago when i was in tears and the audience were in tears, it was only me this time. It was the talk I gave along with 2 friends and PPI colleagues at the NHS Research Scotland Annual Conference. To summarise the talk was originally celebrating the NHS at 70 and we gave our accounts of how medicine has changed with the NHS. Allison started speaking about her experience fo asthma with her mother, then Elisabeth spoke about growing up with the NHS and then I spoke about the NHS today and changes in medications. (I am going to write a full blog post dedicated to our talk in the next week or so).

When I originally gave the talk in October I had not long changed consultant, had started new medication for my asthma and things were looking up. This is part of my original talk:

“I have been in and out of ICU and HDU more times than I can count, it has almost become routine when admitted to hospital now. Once stable I would then be moved to the ward to further stabilise before being ready to go home, once I home I would then begin the arduous task of weaning down my oral prednisolone dose to my maintenance. This I now hope is a thing of the past. I am 4 months into a trial of mepolizumab and it has had so many positive effects. I have not been admitted to hospital since April and am on the lowest dose of oral prednisolone I have been on for as long as I can remember. It has been truly life changing. Advances like this have given not just me but given others their life back. If it was not for research, mepolizumab would not be an option and I would still be on the rollercoaster I was on before”.

It was only just before I was going to give the talk at the ASM when I realised how much has changed in such a short space of time. Never would I have thought  when I first wrote that talk that life would have changed so much.

I have been back in hospital and intensive care, I have not got back down to a lower dose of prednisolone and I am no longer working. I am still on the mepolizumab injections as it has reduced my eosinophil count. It highlights just how fickle asthma can be and how you can never predict what the future will hold.

In a way I think maybe it is a good thing that when giving the talk at the ASM I was able to tell the audience what I had said back in October and then tell them how life has changed in a matter of months. No one unless you’re living with it can really see the unpredictable nature of asthma and how debilitating it can be. Even with the best plans and management it can still rip the carpet out from under your feet. The emotion I showed on stage is the emotion I try and keep buried down because as it does is remind me of what I am not able to do. PPI has given me so many positives but there is still the longing for the life you want or the life you once had.

Having a platform such as the AUKCAR ASM or the NRS gives the opportunity to show everyone what is often hidden behind closed doors when it comes to asthma. It is so misunderstood and if people who struggle to deal with controlling it don’t speak up then the perceptions of asthma will never change. I hope that some of what I do will help make a change and help researchers, Dr’s, nurses, other health care providers and the general public about asthma and what it is really like.

Asthma in the news

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Asthma has been in the news a lot recently, most of this has been reports on how awful the asthma care is for those with asthma in the UK.

It is not all negative and there has been the odd positive bit of reporting such as new drugs being developed or gaining approval for use from NICE or the Scottish Medicines Consortium.

Most written reports both negative and positive have one common theme which is the use of pictures. These pictures are not promoting good inhaler technique as there is a lack of spacer which is recommended in guidelines produced for asthma management. For anybody no matter how young or old when using a MDI (metered dose inhaler) inhaler also known as a puffer should be using a spacer device to ensure the medication in the inhaler gets into the airways and work where it is needed. Using an MDI without a spacer will often result in the medication being left on your tongue or the back of your throat and not in your lungs. The spacer will prevent this.

Asthma is so misunderstood as a condition. It is essential that media outlets use images which are in date and reflect the current recommendations made by SIGN, BTS or NICE who are the tasked with developing pathways for asthma management. The media using images which reflect correct technique won’t drastically improve the horrendous asthma statistics in the UK but it will make people more aware of the use of a spacer along with their inhaler rather than the inhaler on its own.

Small changes like this can help influence bigger changes in the future. If inhaler technique is correct then the lungs are getting the treatment they require to prevent the asthma from flaring up and therefore will in turn reduce asthma exacerbations, hospital admissions and even asthma death.

Please share this post as it is vital that the media start using new photographs with people using inhalers as recommended in current guidelines.

Making choices I never wanted to make.

This is a really hard one to write as it is me excepting just how unwell I am and how broken my body specifically my lungs have become.

Anyone who knows me will know I love my job. I am proud to be a nurse, I love my job, my colleagues and will do all I can to keep working. I have been so fortunate over the years to have a fantastic set of bosses. I am pretty sure if it was not for their care and compassion I would not have a job.

Asthma has plagued me for so long but I have always pushed through it and kept going, taking each attack, hospital admission and going to intensive care in my stride but since November this has not been the case. A particularly bad attach which despite it being managed by respiratory from the outset we could still not get control over my chest despite everything they did, then my consultant coming in during the evening to see me several times highlighted just how serious things were. He has since gone on to mention in my clinic appointments just how serious an attack it was and how we need to plan things and do what we can limit the risk involved.

That attack in November scared me more than anything else has in life. It is a strange feeling when you are fighting with everything you can but your best is not good enough, a combination of wanting to give up but knowing giving up was not an option so you find that extra bit to keep you alive. Once I recovered I got myself back to work and despite a phased return I found it hard. Much harder than I have ever fond before. I found myself back as living to work and not able to do much else. I reached out to friends who were also on biologic treatment to ask advice and the general feeling was that once on treatment you tend to take longer to get over things and back to full health than you did before.

After struggling a lot I had a clinic appointment and was hoping for some answers but I didnt really get any. The decision was made I would be off work for a few months as my lung function was down, had lost a significant amount of weight despite lots of steroids and my heart was really unhappy. The most shocking part about this was that I did not try and fight him when he said I was not to work for a few months. I have always been someone who wants to go back to work. I love work and when well enough I want to be back. It also gives me normality and I can forget about being unwell.

I felt so awful and so run down that I was ok with not working. This was a shock to my GP as well who called me to check if I was ok because I was going to be off work and surprised by the length of time. Over the first few weeks of not being at work I had a long think and evaluated life, and what was important to me and what is important in life.

Its not been easy but I have come to the decision that if I want to continue to live and have a decent quality of life I need a time off work to focus on my health and really allow this new medication time to work and get the benefits I need from it otherwise there is no point in getting this expensive new treatment. I have decided with the support of my Step Dad, Mum and my bosses at work to take a years career break to really give me time to get myself well and able to enjoy life and work again.

During this time I will of course have plenty to do. I will keep doing lacrosse coaching as this gets me out and I really enjoy it. I will be able to do lots of research as well which I find I can do no matter how unwell I feel or even if I am in hospital i can still do it!

I do hope that with taking this time off I will be able to return to work in better health and be able to enjoy life like I once did many years ago.

It is a big step for me but when I didnt fight being forced to take time off work that’s when i knew how bad things were and that I needed to change.

Onwards and upwards from here and

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Having the support of your GP or Asthma Nurse

Having had asthma basically all my life one thing I have come to realise is the importance of your relationship with your GP or asthma nurse. For many they are the front line for you and your asthma care.

I am so fortunate to have a GP who is really understanding and although she finds my asthma baffling she will listen to me and help me when and where she can. Little things like making sure my medications are prescribed correctly, I get my flu jab etc. They also have various flags on their file on the system- this helps so much.

Many dread the phone call into the GP to try and get an appointment because their chest is not good but you have to get passed the gate keepers- the reception staff!!! Before the flags were on the system I used to have great difficulty trying to explain the importance of being seen promptly because my asthma goes off so quickly. It was a nightmare- I understand why they need to do it as appointments are short for the number of patients that need to be seen but when it is asthma it can be different.

After a bad experience not being able to get an appointment on the day because the reception staff thought it could wait, I ended up in hospital! During my follow up appointment with my GP which because I had been in hospital I was able to arrange via the reception staff, my GP was slightly irritated at me not being seen as it is important and could prevent hospital admissions.

Since that follow up appointment there is a flag which says if I am phoning in about my asthma I am to be seen by either my GP or one of the nurse practitioners who know my chest very well. There is also a flag that if I say I need antibiotics I can have a phone call rather than appointment and a final flag that if I feel I need to go to hospital they are to call the respiratory reg on call and arrange this.

Having these flags has made such a difference and offered a sense of security as I know if my asthma is bad then I will be dealt with urgently. Obviously if I call about something else I would need to wait just like everyone else.

I realise I am very fortunate to have all this set up. I wanted to highlight it so that others can ask their GP surgeries about this to help them manage their asthma better as it is a huge stressor when you asthma is bad and not able to get the help. Something so simple as a flag can make the world of difference.