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.

Taking time helps to heal

The first week of annual leave I really felt a little bit of a mess and just didnt know what to do with myself and everything seemed really negative and falling apart around me, but a week in and half way through my annual leave I feel things are starting to get back together and I feel much better for it.

I have had time this week to sit, think and evaluate what it important, what I should prioritise and what I shouldn’t but also to look at what is important to me both in terms of what I like and want to do but also in terms of what is going to keep me healthy and well.

I didnt go to the World Cup to volunteer and to say I was down in the dumps about it would be an under statement. I didnt think I would feel as down about it as I did. It shocked me just how much it effected me but its been for the good. I have been able to watch all the games live over a web stream which if i sit back and think about it I wouldn’t have got to watch all the games if I was there volunteering as would be working and doing stats rather than watching the lacrosse for sheer enjoyment and trying to work out plays and watch how decisions are made and coaches change their tactics according to how games are progressing has been great fun so there are positives of not being there.

I also got a lovely message from the Scotland team today as well thanking me for what I have done which brought a wee tear to my eye. That team are a really special one and each member I really value and glad to be part of their prep to the World Cup so I hope each and everyone of them is enjoying the experience.

This next week I am going to London on Sunday and doing a talk along with some other bits and pieces then coming back home again.

I will be able to spend the rest of my time up north at the cottage for a few days working on various bits of research I am doing and have a new role as part of a patient advisory group for the European Lung Foundation too which is exciting. I am already a patient advisor for a study they are leading but really looking forward to something different with this role.

I thought the 2 weeks were really going to drag as I wasn’t doing what I had planned a while ago and I sort of put it to the back of my mind my annual leave as I knew thinking about it would also bring about thoughts of what I should have been doing but wasn’t able to but I have had so much support from friends that the week flew by and I am sure the next one will to and I will be moaning about wanting to be back on annual leave rather than working!

I need to do some resting as chest wise its been a wee struggle this last week more so than has been for a while but I think thats because the weather has been quite muggy and humid never an asthmatics friend! So hopefully the rain that is pelting down just now will clear the air to make for happy lungs and happy breathing!!!!

2016 Round Up!

2016 has been a pretty awful year. There have been highs but there has also been some mega low points so like much of the world I am looking forward to 2017 and to it being better than this year has been.

January, I guess the start of the year set it off, after being admitted to the intensive care unit on Hogmanay with my asthma. This really took it out of me as for the first time I could not work out what went wrong and why I went downhill so quickly. It still haunts me to this day about how it all went off so quickly.

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Then after being discharged too early (i am one who will go as soon as possible but this time I wasn’t and knew I shouldn’t be going home but the Dr’s were not listening!). So two weeks after discharge I got readmitted and spent my 30th birthday on the respiratory ward which I know all to well. So I guess its not too bad as I knew who everyone is etc but its not the best feeling.

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Photo from on my 30th birthday. At this point I didnt think the year could get much worse. I was off work so long and really worried about being able to keep working. January was one long fight and I was so glad so see the back of it.

February was a better month. Spending time with my nephew making pancakes and also being part of the Scotland squad. Despite the my last hospital admission occurring mid Scotland training weekend I was still able to trial for Home Internationals in Guildford Surrey later in the year so it gave me focus. Having that focus was a huge thing for me and a real positive in what seemed like a whole heap of negativity.

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March was my nephews 3rd birthday- so always a good time to spend with the family celebrating and eating cake!!! I also went to the Scottish Parliament again in March with Asthma UK for the cross party group on Asthma. This was the last one held and there has not been another one this year which is a bit sad as Scotland really is leading the way with asthma research and big data research looking at whole populations in databases rather than bit parts. Hopefully we will have another CPG again soon. At the end of march I also moved house. I moved from my 1 bed first floor flat to a 2 bed top floor flat just round the corner from where I used to live. It was the best move ever!!!

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April- this was the start of the year becoming good. The hard work I put in paid off. My asthma was semi under control. Or as under control as I could get it. But I was able to travel to Guildford Surrey as part of the Scotland B squad for Home Internationals playing England, Wales and Ireland. It was a dream since I was at school to play for Scotland, pull that blue or white shirt on and sing Scotland the Brave in front of a crowd. I got to do it and it may not be much to some people but it was the most awesome feeling. I enjoyed it so much and was really proud to have been selected.

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My club team also won the final four weekend of the Mixed clubs tournament which was great!

May- there was more lacrosse. Capital won the MacRobert Mixed Tournament, Capital won Community Engagement Club of the Year along with Edinburgh City for the after school club we run. I was also elected as Development Director for the Lacrosse Scotland Board. It was a big month lacrosse wise but also it saw world asthma day which was a much quieter affair this year than previous days. Softball and the Laxadaisicals started back up for the season!! Softball was great to keep team spirit up while there was not so much Lacrosse going.

June was a huge month and one of the most positive months of the year. Mainly because I was so busy but also because through March, April and May I had been trying not to do so much to enable my lungs to be good for what was going to hit them. We started off with a trip to Italy for my Mum’s 60th Birthday. It was amazing. A big villa in the mountains with all the family just about. My older step sister and her kids couldn’t make it due to school and the fact my youngest nephew was not born yet!!!

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June continued to be an awesome month as I travelled to London to join some americans who were over from America. We formed a team called International Inferno. The girls were from Florida Southern University and their coach Kara who had just won the NCAA Div 2 Championship. I joined them in London for a weekend and had a great laugh getting to know them and playing lacrosse with them. To say I was slightly nervous was an under statement as they have come off the back of a championship win and I am a goalkeeper who has been in the goal about 6 months!!!

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After London it was a quick turn around and the travelled to Prague to join the team there for the Prague Cup. Prague was a great experience. We were second in the tournament but it was so much more than just coming second. Have made some great friends and hopefully will see them all again soon.

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(two missing from this photo of players!)

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Coach Kara Reber in the middle in yellow!!!

So as you can see June was a huge month!! July was a month for rest and recovery and thats what I did. I really feel my body took a hammering from the constant go go go but I wouldn’t change it. It was the really good pick me up and also the sort of finale to my lacrosse playing days. I was ambitious after Home Internationals but could not resist the chance to go and play in Prague etc. Im so glad I did it. Going with your gut it a great thing!

August started off with a trip to London to speak about living with severe asthma. This was a great opportunity as I was not speaking to your average people about asthma but I was speaking to the creme de la creme of asthma researchers and Drs. I was speaking to Drs who I have read about and wanted to be under because of their expertise in asthma. The likes of Ian Pavord and Adel Mansur. I was speaking to them to give them advice of what it is like to live with severe asthma, and the trials of living on steroids. It was a great experience and I ended up coming back with a new area of interest. I joined a group of paediatricians to collaborate with them on a bid proposal for a piece of research. It was amazing being part of something from the birth of it and the idea of it to the grant application. Also this was one of the first times I was a co-applicant on a bid. Something new for me (after this year not my last either!!). My high of the start of the month was short lived as not long after my return from London I ended up having a severe attack and ending up going to intensive care for a few days and then a further week or so in hospital. I kind of pushed to get out of hospital as had big plans in September which I was not prepared to give up on (I did end up not carrying out my plans but more of that to come). This admission was tough. Access was a nightmare, they couldn’t get an IV in. I ended up asking one of my colleagues from renal to come and try cannulate me but not even they could manage it which is so unusual- renal nurses get blood out of anyone!!! It took a while to get off the IV aminophylline as well. But we got there and I got home.

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This is a photo I like..I used my oxygen to blow up a frog balloon thing my nephew got on a magazine. I wasn’t able to blow it up (obviously- don’t think I could even now) but thought it was a funny photo!!!

September started off with me making difficult decisions. I pushed to get out of hospital because I had big meetings coming up. I had been invited by Astra Zeneca to come down and talk at their annual meeting which they were hosting in London ahead of the European Respiratory Society Conference. I went down to this and gave my talk. I made some amazing friends, one who has had their life changed by new drugs out there and the other who has asthma like me and can totally understand how it feels. Its not often you get someone who just understands but he does, and then you have someone who proves your life can be changed by drugs which has renewed my hope in the one day there will be a drug I can get which will change my life around.

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After the meeting I was meant to stay in London and meet up with Jess a fellow brittle asthmatic who I have spoken to for about 10 years after meeting on the asthma UK forum. I was also meant to be going to a meeting with the European Respiratory Society as a patient expert on a project they are involved in and finally I was also invited to the House of Commons for a drinks reception held by asthma UK but I decided to head home on the Friday night and miss these meetings as I just wasn’t well enough. I didnt get to meet Jess either but we both agreed there would be other times!! I also had clinic in September. I am lucky in that I can contact my consultant should I need to in-between clinic times so clinic is just a touch base time. Nothing was changed and we are just going to keep going as we are and tackle each blip as they come!!!

September I also took on the position of assistant manager (AssMan) of the Scotland Senior Womens Lacrosse team. I was so thankful for this. Since not playing I have really wanted to still be involved in Lacrosse but not knowing how, so by being asked to be AssMan I was thrilled. I have found I can still use some of my sports science background and help out with the exercise testing of the players and help with the goal keepers too. I really enjoy the job and so thankful for it.

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September ended with another new experience. I was interviewed for a book which I am being featured in. The book’s working title is Healthcare Hero’s and I am being featured because of the stuff I do for research and with lacrosse in spite of my asthma. But as I said to them at the end of the interview if I didnt do what I do I would be in a big depression and have nothing to live for. Its simple as that.

October was a quiet month. I didnt feel great most of it to be honest. I was back and forth to the Dr a fair bit and emailing my consultant to. I was not really bad but not great. That horrible in between time. I managed to hold out most of the month until my GP decided enough was enough and got me in to be seen. It was a useful admission as it meant we sorted out my main relief from the chronic lung pain I have from all the exacerbations but also got rid of this viral thing I had. It was pretty uneventful other than all the junior Drs were terrified of me as I sounded awful but not awful for me!!!

November was a fairly big month too. We had the annual scientific meeting for the Asthma UK Centre for Applied Research. This was hosted in Edinburgh so I got to stay at home but it was great to meet more PPI members who I have not met before. It was an interesting meeting and also amazing all the research which is going on. Later in November my best friend got married. My little brother payed the pipes. It was held in Edinburgh Zoo and it was an amazing day!! I loved every minute of it. I just wish I could have stayed to the end but my chest was just not up for it and I had to leave. But Jenni looked amazing and both her and Rich looked so happy.

Later my brother also got married up in Loch Tay. They had fantastic weather and could not have asked for a better day. Slightly chilly but clear, no wind and no rain. What more could you want.

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Me and my nephew at my brothers wedding.

December to where we are now. December brought the meeting of Jess and her beautiful and wonderful canine partner Xenna. We have waited 10 years to meet but once we met it was like we had always known each other. Poor Xenna didnt get fed till late one night because we were just chatting and didnt realise the time till she started whining at us. She got fed very soon after that don’t worry!!!

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(me making Jess look like she has a ta!!) It was so great to meet you!!! One of the strangest things happened though. When we were wanting around the museum Xenna kept staring at me and walking over to me. We think this was because she was picking up I wasn’t well and was getting chesty. She did it several times.

Sadly not long after Jess left I was admitted to hospital with a chest infection. Maybe Xenna was right and could detect I had a bad chest and was brewing something. Even though she is not trained for that. It was very odd. The admission was fairly uneventful and I picked up ok but I was determined to get out and be ok for Christmas and be with my family. It was slightly stressful as didnt let everyone know I was admitted as it was rather routine but news got out. I just want to get on with admissions quietly and my own way unless I am critically ill and going to intensive care or high dependancy then I let everyone know as I would be AWOL otherwise!!!

Christmas came and went. A small quiet Christmas up north with my mum, step dad and youngest brother. It was a lovely time. The weather was awful- very windy, snowy, raining and cold but it meant we could stay in by the fire and reads books and chat.

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Today was back to work and face reality before Hogmanay and we welcome in 2017. Here hoping 2017 is a better year health wise than 2016 has been. I have to be honest it has been a long slog and really hard work. There have been some awesome highs but some really bad moments and some movements I never want to go through again.

Motto for 2016 has been Dum Spiro Spero

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“Asthma charity may quit Scotland in London office switch”

I hummed and hawed about this post and how to write it and what to write. I don’t think I have ever started and restarted a blog post so many times trying to find the right was to express my thoughts.

“Asthma charity may quit Scotland in London office switch”. That was the heading of a front page article in The Herald on the 23rd July 2015. As it turns out the article was speculating and making suggestion that the Asthma UK office in Scotland may be closed and those with asthma in Scotland would no longer have someone in Scotland ensuring that asthma is recognised and on the agenda not only for the NHS but also for the government.

As it turns out the article is effectively a lie. The suggestion that Asthma UK is considering shutting its Scotland office is false. The decision has been made- they are shutting the office. For me personally I am devastated hearing this news. Not only am I devastated but I am also angry. Asthma UK Scotland has had such a big part of my life and helped me so much particularly recently when I struggled to come to terms with just what my asthma was like and how it was effecting my life. The people in the office made so many opportunities  possible for me. If it was not for the invitation to the launch of AUKCAR by one man my life would be really different. I would not have the understanding about asthma, the knowledge of research and the research process but more importantly I would never have met the individuals who really want to make a difference to the lives of people with asthma like me.

I really am saddened at the loss of a great bunch of people who were such an integral part of asthma in Scotland. There will be a big hole left. I know so many will be feeling such a wide range of emotions- I have gone from saddened, to anger, to a sense of grief and fear. Why fear- I am scared that asthma in Scotland will be forgotten. It is such a big part of the lives of so many and the Asthma UK Scotland office kept asthma on the agenda and made sure that the health service, the scottish parliament and anyone else who could influence change were always aware of the devastation asthma is causing where is really should not be. Asthma shouldn’t kill, it shouldn’t hospitalise so many and it shouldn’t dictate peoples lives.

I am fortunate that I am surrounded by people who care about asthma and want to help people with asthma. I am part of AUKCAR and being part of that I can see first hand the research that is taking place to make developments but I am in a very special position. Before being part of AUKCAR I looked to Asthma UK Scotland and relied on them for advocating for us. It worries me that despite the newspaper article saying the offices in London will look after us in Scotland  I sadly won’t believe it till I see it. Having felt let down by them before I have in the back of my head that this will happen again.

When was I let down?? I always used to help out at events in Scotland particularly those in Edinburgh. I would be part of the cheer team during the half and full marathon. I cheered runners on as they raised vital money for asthma research and support for those with asthma. I ran the half marathon for Asthma UK in Edinburgh. I was looking forward to the event. I was also looking forward to see those from Asthma UK support their runners like they had before. Water station after water station I kept looking for the distinct lime green and purple but never saw it. There were many other charities lining the streets but Asthma UK was missing. I did not let this phase me but I was pretty upset that after all the times I have turned out to help they were not there when I ran. I asked why and was told that they don’t get a lot of support in Scotland and not many people taking part in events so it was not beneficial for them to send a support team. I volunteered several times to hold a cheer station and would attend different events for the runners raising money for Asthma UK but events were all run and organised by the London office. It appeared to me they were not interested as I never had much response at all from London. I would have thought they would jump at the chance for people volunteering to do something. It is not like they had no runners either. There was a huge number and I would see a lot of Asthma UK running vests who could have done with support. This previous experience as trivial as it may be has given me a predetermined expectation of what support Scotland will get.

One of the vital things we have here in Scotland and more importantly Edinburgh is we have the opportunity to attend cross party group meetings for Asthma where politicians will actually listen to asthma and lobby parliament for things and make sure asthma is not forgotten.

It is with a really heavy heart I say goodbye to Gordon and Karen (and Shona also). You will be missed a lot. You have done so much for people with asthma in Scotland. You have our support and I hope whatever you do next you continue the fantastic job you have done for us here in Scotland (even if we do stress you out etc!!).

Im left with a lot of different thoughts and decisions on ideas I have personally for asthma in Scotland. A few are: Will the cross party groups continue or how can we sustain them? Is there a benefit to set up my own charity for those with asthma in Scotland? Will Scotland become a forgotten entity much like the forgotten generation?

I realise this is a very one-sided opinion and view. I know it is not only Scotland that is going to suffer but Scotland is important to me and I am sure those in Wales will feel the same about Wales.

I found this so difficult to write mainly because I am so aware of my role in the Asthma UK Centre for Applied Research which I love and therefore have to work with Asthma UK but I also feel deeply let down by them and need to express how I feel as I am sure (in fact I know) I am not alone in my feelings and thoughts. Only time will tell and I hope Asthma UK prove me wrong and support Scotland just as the Scotland office has done on so many occasions individually but also for all with asthma in Scotland.