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.

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.