What if we viewed lived experience as an asset? As an asset of professional, economic,…
What a year 2018 has been. Such highs, such lows, but overall, it’s been an incredible year. I have had such fun, achieved a lot, received recognition for my work, been involved with even more work and projects, I’ve given quite a few speeches, I’ve appeared in media, and more. However, I also suffered a lot medically this year, and then received some answers to the cause of my condition that, whilst it doesn’t change anything about my care/treatment, gives us some understanding and a form of closure. Here, I reflect on this year’s highs and lows and share my hopes, goals and aspirations for 2018.
Here, I share some of my highlights of 2018, things I’ve learnt and what I’ve gained this year, and share my goals, aspirations and revelations for 2019. However, for a full summary of my 2018, I have given a month by month breakdown of 2018 for an idea of just how hard I have worked this year – and, even that overview, is not the totality of what I’ve done in 2018. This is not about showing off, but giving others an appreciation of how hard I work, and more than that, to remind me how much I have done and achieved.
So, here are some of my highlights of 2018.
Honorary Degree from the Open University
I was truly blessed in September to be awarded an Honorary Degree of Master of the University from the Open University for commitment to public services. This was in recognition of my work over the years. We attended my ceremony at the Barbican on Friday 21st September, I attended with my mum, my Grandma, my former J’s Hospice nurse Bev Barclay and my colleague and friend Maddie Blackburn and her husband Paul. It was a truly magical day. The ceremony was incredible, my honorary degree was awarded first with a very moving citation by Dr Steve Hutchinson about me and my work – and with Steve also announcing to the audience that Molly would think every round of applause was for her. I was then awarded the degree by Professor Josie Fraser, Executive Dean, and I moved forwards and gave my acceptable speech, which seemed to be well received. Not to mention sharing the ceremony with Dame Katherine Grainger, who received an honorary doctorate in the same ceremony. We had such a magical day, something I will never forget. I now am able to use the post-nominal letters MUniv after my name, alongside my MBE from 2016. I feel truly privileged to have received such an accolade and look forwards to a relationship with the Open University – an institution I admire greatly for its openness and support for people of all walks of life to gain qualifications in an accessible way, and their care and support of students both during and after study, so my honorary degree could not have been awarded by a better institution in my eyes. I am so proud to be associated with the Open University.
Molly was a star as always, she truly did me proud, not batting an eyelid all day and I had so many compliments about her. I am glad I got to share my day with her too – she sadly wasn’t able to attend my investiture in 2016 as she wasn’t yet qualified, which was a shame, but we got to share this ceremony with her and honestly, I am so proud of her. She just rises to every occasion.
We then had dinner at the Barbican after my ceremony and that made the day even more special, spending time with mum, Grandma, Bev, Maddie and Paul; neither Bev nor Maddie or Paul had met my Grandma before, so it was wonderful they were able to meet her, and for me to finally meet Paul after all these years – we both felt like we knew each other even though we hadn’t met ‘in the flesh’ before.
Read all about it on my blog here.
The Disability Power 100 List
Being named as one of the 100 most influential disabled people in Britain was another high in my life this year. I missed out on the launch event as I couldn’t get back from Loughborough in time, but still, I am considered one of the most influential disabled people in Britain – how amazing is that!? I do what I can, with what I have, and make the best of it, and do what I can to contribute and make a difference for others, and I am truly humbled to be included on the 2018 list.
To find out more, read my blog about it here.
Dr Tedros Meeting:
After my words were taken to the World Health Organisation (WHO) Executive Board by Dr Stephen Connor of the Worldwide Hospice Palliative Care Alliance (WHPCA), Dr Tedros Adhanom Ghebreyesus, Director-General of the WHO, asked to speak personally with me, giving his contact details to Stephen. I called him a week later, and he asked to meet personally with me when he was next in London. Then on Friday 23rd February we travelled up to London to meet with Dr Tedros. We spent about 20 minutes with him, between an event and him travelling to the airport, but what a 20 minutes it was – absolutely incredible. It is almost unheard of for a DG of the WHO to meet personally with a direct stakeholder/person with lived experience, so I am truly honoured to have had this opportunity. He was touched by my words that were taken to the Executive Board – so even though I wasn’t there, it shows you the power of words and the voices of people with lived experience – so much so that he wanted to meet with me. I went in to the meeting with facts, figures and so on, but Dr Tedros had done his research, he knew all about palliative care and universal health coverage, I didn’t need to tell him. What he really wanted to do, was hear more of my story, to get to know me, to understand my life, to learn about my work and to make a connection and a friendship that can form the basis of collaboration. He was truly invested in listening to me, so much so that at one point, he shed a tear. He explained how much my words and my story had touched him, and talked to my mum as well and said how amazing she is, and shared that he looks at me and imagines how he would feel if it was his son, who is the same age as me, who was living with what I live with, and how hard it would be for him as a parent, which only deepened his admiration for me and my mum. He truly wanted to know me and to work together to make a difference. He was extremely complimentary. Then he had to go, but not before asking me to keep in touch and to always let him know if he can help with anything, and to keep up the good work. Brief, but such a powerful meeting. I will continue to make use of this connection and our friendship. It was a magical experience and I am truly blessed and humbled to have had this opportunity, and to have his friendship.
For more about this, go to the dedicated blog here.
We attended WOMAD Festival (World of Music, Arts and Dance) in July, invited by St Christopher’s Hospice and supported to attend by the St Christopher’s team and the accommodation and support of Festival Spirit, an amazing charity who provide what is basically a hospital in a tent. Electricity, lighting, heating, individual cubicles, electric profiling beds, carer’s beds, hard flooring, hoists and they also provided a dedicated fridge for my TPN, as well as having a kitchen tent and a tent to charge our wheelchairs in. Without Festival Spirit’s accommodation, I would never be able to attend a festival, let alone to ‘camp’ (though more like glamping than camping!). It gave me the opportunity to just be a young adult, and as all my physical and medical needs were catered for with the accommodation, mum doing my care and the St Christopher’s team, I was just like any other festival goer, and my medical needs and disability faded into the background. This was despite being on IV antibiotics due to having sepsis the weekend before we went. I had such an amazing time, enjoying all the festival had on offer, making memories, spending quality time with mum, spending time with friends and making new ones, laughing throughout the trip, and having a wonderful time. I also got to meet the incredible Jess Thom, of Touretteshero, who was there giving a speech in the World of Words area and signing copies of her book “Backstage in Biscuit Land”, which was amazing – and she recognised me! Which was a privilege. I recently bumped into her in London too. WOMAD was just the most amazing experience and such a wonderful time. I do hope we can go to more festivals in future with Festival Spirit, and I will do all I can to support the charity and enable more people to experience what I have experienced thanks to the charity.
For more about this, go to the dedicated blog:
To learn more about Festival Spirit, go to their website:
NHS Peer Leadership Academy:
I applied and was accepted onto the NHS Peer Leadership Academy, a programme of learning and personal development to enable people with experience of personalised care, including Personal Health Budgets and personalised care and support planning, to become effective peer leaders and to use their experience to make a difference, in whatever ways they would like to. It is a 6 day programme, taking place over 2 consecutive days per month for 3 months. There are two academies per year, a Spring/Summer PLA and an Autumn PLA with a new intake for each academy.
We had the most fantastic group of people in our Autumn 2018 PLA, I truly have made friends for life (and people to collaborate with too). I wrote a blog for each day of the academy, which I will list below, which give more of an overview over the content of the academy for our group, but here I wanted to talk about what I enjoyed most, gained and reflect warmly from the PLA. The people really ‘made’ the PLA; People Hub team, who are part of the NHS England Lived Experience Team, who run the PLA, and the participants, who, as I said, are friends for life.
I learnt so much from the academy, I have definitely gained a lot and deepened my knowledge and this will benefit me greatly in my work – well, it already is. I am so glad I applied, I’ve had my eye on this since the original Peer Leadership Programme, but I could never do the residential aspect of the programme, and it’s too far to travel back and forth in a day, so I couldn’t apply. This year, I started being able to do residential events and conferences owing to mum’s amazing recovery, and so I applied and I am so glad I did. It was even better than I ever could’ve imagined.
Following this, I applied to join the NHS England Personalised Care Strategic Coproduction Group, and got accepted! So I am looking forewords to my first meeting in January, and to some opportunities that have already resulted from this – 3 speeches and another event so far.
My first Hospice UK conference was amazing! The plenaries and presentations were fantastic and we just had a magical few days. Some of my favourites were the presentation by the St Christopher’s joint CEOs on reinventing hospice care; Dr Lorna Fraser’s (Martin House Research Centre) session talking about children and young people with life-limiting conditions, then comparing this with adult hospice care, and about research in children’s and indeed adult palliative care; and without a doubt my ultimate favourite was Dr Kathryn Mannix’s plenary, the final one of the conference, “Death stories: truth and consolation”, in which she shared stories of end of life and talked about giving end of life back to people and the need to narrate death to people so they know what to expect, which can be watched here. I got to see so many friends and colleagues, meeting many for the first time face to face. Meeting Sacha Langton-Gilks finally was amazing, seeing Mandy Paine MBE again, seeing Julia Downing, Lesley Goodburn, the Hospice UK team members, and so many others, and great to spend time with my Open University Sexuality Alliance colleague, Alison Cooke, but a special mention goes to Dr Kathryn Mannix who I finally got to meet after lots of tweets, and she signed a copy of her book for me (With The End In Mind – do buy it, it’s an amazing book), it was wonderful seeing so many friends and professionals and colleagues – too many to mention all of them. I delivered a speech at a session on the first day, “Living with life limiting illness: children and young people” with Dr Susan Madge, Consultant Nurse and Associate Director of the Adult CF Centre Royal Brompton Hospital and Sacha Langton-Gilks, bereaved parent and author of “Follow the Child”, with Alison Cooke chairing the session, in which I spoke about sex and relationships for young people with life-limiting conditions. You can watch the video of my session here. It was a fantastic few days, I was exhausted by the end of it but I am so glad I was able to go and enjoy it. Molly was a star as always – she literally thought the conference was all about her, as she was fussed non stop for the two days of the conference. However, on top of that, Mike, Sandra and Caroline from Dog A.I.D. came over to the conference to see us, which was fantastic, thank you so much for coming – and waiting around as I struggled to get to see them.
Open University Sexuality Alliance:
In 2018 we developed our next phase of work and were awarded funding by Together for Short Lives via their Improving Transitions for Young People Fund, which is our project, “Talking about….sex and relationships: Young people speak out”, which is a partnership project between us – The Open University Sexuality Alliance – and Hospice UK. This began with me founding and setting up the young advisory group, called AdversiTeam, which currently has 16 members, and we coproduced this project with the wider Alliance, and are co-leading and driving it forward. I am one of the project leads and am really excited as we carry out this project and so proud of the AdversiTeam who have been fantastic and given us such important contributions. The project is developing mixed media Open Educational Resources (OERs) to support conversations around sex, sexuality and relationships between young people with life-limiting and life-threatening conditions and their parents, carers and professionals, as well as a booklet to support professionals in using the OERs. This is building upon our previous work in producing the “Talking about sex, sexuality and relationships” guidance and standards, published 2016.
More information about the project
Guidance and Standards
About the Alliance
Everyone knows I had health issues from birth but lived a relatively “normal” life till I was a teenager, and was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), but my condition kept going beyond EDS and didn’t quite fit the presentation of EDS and so I was referred to the National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, where I came under Dr Ros Quinlivan. I started having tests, with an EMG showing myopathy and other tests showing some abnormalities, but I needed a muscle biopsy, and waited 2 years for that, having it done in March 2018. Then in November, I went to see Dr Quinlivan for my regular follow-up, and some of the muscle biopsy results were in. The biopsy showed abnormalities in my Mitochondrial respiratory chain complexes, showing Complex 1 Deficiency, a slightly abnormal Complex 4, ubiquinone deficiency and an abnormal looking muscle under microscope (but no ragged red fibres). This shows we’re looking at some form of Mitochondrial Disease, which makes a lot of sense. This has brought us some answers and some closure, even though it doesn’t change my care/treatment and it isn’t a specific diagnosis, but we’re hoping the 100,000 Genomes Project may one day lead to finding the underlying gene mutation and thus a specific diagnosis.
To learn more, go to my blog all about that here.
On 2nd October 2018 I turned 25 – not a big deal, right? Well for me, it is. Turning 25 means I have survived at least 2 years longer than expected, 2 years beyond my maximum prognosis. Not only that, but it’s no mean feat to survive sepsis 14 times, and overcome complications that you weren’t expected to, over and over. In a way, we’ve become a bit complacent, just expecting me to pull through, but this year has been tough, there’s been a definite decline, more issues and complications, my new understanding of why I am as poorly as I am and what is causing my condition, I’ve had sepsis twice, other infections, physically I am a lot weaker and my health more fragile, and we’ve been reminded just how poorly I really am. It’s made me think a lot more about my end of life, and I am in the process of updating my advance care plan which I haven’t done for a long while now, and really thinking about what I want and what we need to put in place. I know I am not going to live forever, and I shouldn’t still be here now, but like I said, I think we – me especially – have become a bit complacent about me just surviving everything all the time, almost that I am somehow invincible, but I am not, my health has shown me that this year, and I just want to make sure that my end of life has the best chance of happening where – and how – I want it to. I am so, so fortunate to have survived as long as I have, and that is down to the exemplary care of the NHS, from my consultants and specialist teams, to my GP, to the local community teams, to the hospice, to my palliative care consultant and to my home care team – and not forgetting my mum (who is part of my medical team in my eyes) – especially my team and the A&E and other professionals at The Royal London Hospital, who have got me through sepsis and complications through acting quickly each time, and who get me home at the earliest available opportunity as they recognised that’s where I want to be, and where I will recover best. They truly do pull out all the stops every time. I am so, so privileged to live in the UK with our universal health coverage package (the NHS) so I receive expert care, whenever and wherever I need it (and continuous care funded by the NHS in my home), and have access to all the medications, treatments and interventions I need, free at the point of use. My international work in palliative care and UHC has shown me just how fortunate I really am and I never take my privilege for granted.
I feel somewhat philosophical at surviving another year. I am grateful to still be here and still have the quality of life I have now, despite my deteriorating health and increasing needs and complications, and to continue to do my work and make a difference. Writing this blog has made me appreciate just how much I have done and achieved and the impact I have made, even though I know I still do struggle to appreciate it all and to feel proud of myself. I have lived an incredible life, whichever way you look at it; my illness is horrific and it’s far, far worse, more difficult to live with, it’s more painful and more of a struggle to endure than I ever let on, but I also live an amazing life both in spite and because of it. I’ve made more of a difference than I ever could’ve imagined, and achieved more than I ever expected, and get to do things and go places beyond my wildest dreams, and I do love my life in many ways. It doesn’t make up for the suffering and struggled I endure – but nevertheless, I live an incredible life. And it’s something to celebrate to have reached the age of 25 – and to now be seeing in the year 2019. I never take even a single day for granted. So, if you do nothing else as a result of me – appreciate every day you get.
What have I learnt?
2018 has definitely been a year of learning, that’s for certain. The Queen’s Young Leaders Leading Change programme, the NHS Peer Leadership Academy, the Level 2 Award in Independent Advocacy and the safeguarding course I’m 2/3 the way through, have all taught me a lot. However, I’ve learnt more than just facts, figures and information. I have learnt a lot about myself and my own skills and abilities, pushed myself outside my comfort zone, and not been afraid to try new things. I have learnt just how resilient I can be, and, though this sounds bigheaded, I really have learnt just how knowledgeable and skilled I am, as I have had so many opportunities to put into use the knowledge gained over the years, the skills learnt and acquired, the parts of myself I didn’t know existed, and truly put my body to the test physically, but also stretched myself mentally. It has been a journey of self discovery, this year, and I come out the other side with more of an appreciation of my own skills, talents and knowledge – and have learnt that I need to start learning how to pace myself! I preach pacing to all the people I support, yet don’t practise it myself. Now time to practise what I preach – well, we’ll see how that goes!
What is my favourite memory?
My favourite memories of this year – because I cannot choose just one – are as follows:
- Sharing my honorary masters ceremony with people who matter a great deal to me, my mum, Grandma, former J’s Hospice nurse and friend Bev Barclay and a friend and colleague Maddie Blackburn and her husband Paul. It was a magical day that I will never forget, such a fantastic memory; the ceremony itself, and having dinner together afterwards.
- Spending time with various friends over the year, including Amy, Vivek, Peter, Mandy, Thines and Junior, and many others, meeting the likes of Jessica, Ruth, Chloe and Jordan and the O’Neil family, and also Junior inviting us to have dinner with him and his care team at the Shard in November, which was wonderful.
- Not one memory, but the enjoyable time mum, Molly and I had together away at events and conferences this year, we really loved that time together and being ‘just us’, like old times.
- Spending time with my sister over the later part of this year and seeing her (despite the breakup) the happiest I’ve seen her in a long time. She’s currently away in Thailand visiting our dad.
- Spending quality time with my family.
- The speeches I have given, because I cannot choose just one!
I know those are a few memories and also more broad than just a single memory, but they are some of the highlights of my year.
Looking ahead to 2019….
My 2019 Goals, Plans & Resolutions:
You may be wondering what my 2019 plans and New Years Resolutions are?
- Take more time to do things for fun.
- Spend more time with friends.
- Get better at saying no to things, I don’t have to do everything that comes my way (I am better at this, I’ve said no to quite a lot of things recently, but always room for improvement).
- Do some projects of my own, which include:
- Write my autobiography
- To make progress on the two documentaries, one about me, one being made by me
- Pursue a project of my own around improving uptake and support in setting up and running a Personal Health Budget (which may also translate into social care personal budgets/direct payments and EHCP personal budgets too)
- To pursue a project on developing workshops
- To continue updating my advance care plan and to continue making progress with my digital legacy plans
- Get the nursing aspect of my Continuing Healthcare package, onto my Personal Health Budget and finally be in total control over my life and care, to have flexibility and autonomy and to get on with living life to the full in a way I can’t currently.
- Finally, I’d like to be in paid employment (even if self-employed) and be financially self-sufficient, and developing my business is part of this.
What am I looking forward to most about 2019?
My work – of course, but especially getting my charity YACCA registered and launched, working on some other projects I have in the wings and hopefully getting started on my autobiography and to hopefully building up my company and paid work – and to making as much of an impact as I can, helping as many people as possible and to continue adding to my legacy, but most of all, spending time with family and friends, making precious memories, our first proper holiday for over 11 years to the Lin Berwick Trust property in East Harling, Norfolk, and to our holiday with Maddie and Paul in Brighton, to doing more things ‘just for fun’ and anything else 2019 has in store for me!
2018 work and life breakdown:
Here is a breakdown of my year, although this isn’t everything I have done, there was far more written work, organisation, Skype calls, organisation, paperwork, and other work, which doesn’t get listed. I just wanted to write out a long-form explanation of some of the work I have done this year, not for anyone else’s benefit but my own, to help me appreciate how much I do and to have a permanent record of that which I can be reminded by in years to come.
The year began with a visit to Saint Francis Hospice, meeting Jan Scott and others in the team, and seem to have met up with members of the SFH team numerous times this year, including being invited by them to speak at two events. I began the Leading Change course as part of being a Runner-Up of the 2018 Queen’s Young Leaders, which has been a fantastic course, albeit I have had to step back from aspects of it due to work commitments and health, including making a video to explore what made me who I am today and my work, interviewing my mum, grandma and then Maddie Blackburn, Bev Barclay and Lizzie Chambers, exploring what makes me, me. I met the amazon Jill Samuda from Kissing It Better; contributed to an article in the Guardian by Dr Frances Ryan on the warehousing of disabled people; participated in an NHS70 webinar; had a call with Lucy Brumpton of East Anglia Children’s Hospices (EACH) regarding engagement with young people and setting up young people’s groups; had an NHS England Children with Complex Needs and SEND Board meeting; met with a lady called Elaine regarding her book on digital legacies and gave my contribution via an interview; and took part in more than a few Twitter Chats. My words were taken by Dr Stephen Connor of the Worldwide Hospice Palliative Care Alliance (WHPCA) to the World Health Organisation (WHO) Executive Board. Following this, Dr Tedros Adhanom Ghebreyesus, Director-General of the WHO, asked to speak personally with me, giving his contact details to Stephen. I called him a week later, and he asked to meet personally with me when he was next in London. It was incredible!
This month began with an OU Sexuality Alliance meeting, which went really well and discussed my setting up of the young advisory group which is now, AdversiTeam. This month I finally got to meet some amazing friends whom I’ve known online for a long time, the O’Neil family, and spent a great few hours with them, as they were down south (they live in Scotland) and so we met half way between where they were staying and us, in Surrey, and just had a wonderful time. The next day we travelled very early in the morning up to the House of Commons to give evidence to the APPG on Children Who Need Palliative Care, looking into the choice at end of life and the unmet needs of children, young people and families accessing palliative care, which led into a report I will discuss later. The day after this I attended the Hospice UK People in Partnership forum, of which I am a member, where we had a great meeting and at which I presented the international palliative care patient and carer network I set up, Palliative Care Voices, which was a success. I then had visits and Skype calls with a few colleagues and other individuals, as well as a visit with my palliative care nurse, over the next week. The following week I had a few Skype calls, met another of my amazing friends, Ruth, and her Assistance Dog Willow, who came over for the day. Then, Friday 23rd February we travelled up to London to meet with Dr Tedros Adhanom Ghebreyesus, as this was organised for whilst he was in London in between a meeting and before he headed back to the airport, and we had about 20 minutes with him, talking palliative care, universal health coverage, but more importantly, one friend to another, about our experiences, my story, my work, my life and he was so very appreciative, explaining how honoured he was to meet me and how much my words, my life and my work has touched him, and how, when he thinks about me, he thinks about his son, who is the same age as me, and how he would feel and what they would face if it was his son who was in my situation. Brief, but such a powerful meeting. I will continue to make use of this connection and our friendship.
March began with two Skype calls for two different projects, then the next week a few Skype calls, then from 7th to 10th March I was inpatient on the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, for my annual MOT and to have my long-awaited (2 years in the waiting) muscle biopsy. I also participated in a Twitter Chat whilst inpatient! The following week I had a meeting for the CQC/Oftsed SEND Area Inspections board, and later that day, a Skype call with a mother in Australia who set up the first Children’s Hospice in Queensland, Hummingbird House, and is looking to set up a hospice service for young adults. I had various other Skype calls, visits and activities mid March, before travelling up to Birmingham for the Together for Short Lives Transition Summit, which was fantastic and I got to meet friends I’ve known online who are fellow Young Avengers. That was a great experience. The next day we had the East of England Transition Taskforce Regional Action Group, which was a great meeting, and that was it for March.
April began with some hospital appointments and care related visits, before we travelled to Milton Keynes and stayed at Chicheley Hall for three days (two nights), Monday to Wednesday, for an Open University Sexuality Alliance on the Tuesday, which was very successful, thrashing out and deciding on what was going to be our next phase of work and to discuss and formulate our bid for the Together for Short Lives’ Improving Transitions for Young People Fund. We had dinner the Monday night with Maddie, Alison and Junior and his team, whereas others just joined us for the Tuesday. Then we stayed the second night and before coming home, we went to Bletchley Park, which was very enjoyable. The following week we attended the Commonwealth Youth Forum before heading over to the House of Lords for the Commonwealth Disabled Youth Roundtable event, organised by Parmi Dheensa of Include Me TOO, which was a resounding success, and I got to meet or see again so many friends that day, including Carly and Honey Jones, Daniel White, Jonathan Andrews, Ummy and others – it was great to see them all and make connections. I then had various calls and visits, and mum’s cousin Simon travelled up from Wales to spend time with us too. The following week I had a visit with a lady called Denise who is part of Shared Lives Plus to discuss our work, we met at the Transition Summit; I then had an NHS England Children with Complex Needs and SEND Board meeting; and various other calls, appointments and visits.
May kicked off with a Transition Taskforce North London Regional Action Group; followed by some visits for work and care, a mentoring session, a Twitter Chat, and then a Sexuality policy day at Keech Hospice with the Open University Sexuality Alliance, at which I spoke and supported the day, followed by an OU-SA meeting whilst we were together. More Skype calls and care visits, including a meeting with the CCG regarding my Personal Health Budget, a visit with Claire Henry MBE which was amazing to spend a good few hours with her and for Claire to meet mum (and see Molly off duty – she can verify how different Molly is working vs at home!), we had a wonderful time. On 23rd May I attended the Reform Think Tank conference where I delivered a presentation alongside James Sanderson, Director of Personalised Care at NHS England, and Baroness Cumberlege, which was a success, we were speaking about personalised care and I spoke about the patient experience of personalised care and personal health budgets. Following this, more Skype calls and care visits and care package meetings.
I took some time off in early June as I was shattered and struggling, and spent some time in hospital due to pancreatitis, and generally had a bit of a rubbish time. However, I came back with a bang with a speech at St Giles Hospice, Lichfield, on social media and digital legacy from a patient/person’s perspective, sharing my thoughts, ideas and plans. Calls and more Twitter Chats, I also did some filming for a Living Life To The Fullest short film; Living Life To The Fullest is a research project I am involved with, which “seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with life-limiting or life-threatening impairments (LL/LTIs). With children and young people alongside as our co-researchers, the project will be a space where disabled children and young people can tell new stories of disability; their own stories.”, and we produced a short film as part of this arts-inspired project which has proved very successful and well received. Then on the 25th June we travelled up to the House of Lords for the APPG on Global Health for the UK launch of the Lancet Commission Report: “Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage”. I was a keynote speaker at the event and it went down very well, and then we had dinner in the House of Lords following the APPG/Launch, which was wonderful.
July began with the Havering End Of Life conference at which I gave a speech on transition and the young person’s experience, that was very well received and it was great to see some of the Saint Francis team and various other palliative, end of life care, hospice and NHS professionals at the event. On Thursday 5th July I was asked to appear on Victoria Derbyshire to celebrate the 70th Birthday of the NHS, sharing how the NHS is keeping complex and seriously ill patients like me alive – often against the odds. Following this we rushed across London to get to Westminster Abbey for the NHS 70th Birthday celebrations, which we were invited to attend, and it was a very special celebration and we really enjoyed it. I then spent time with one of my friends, who also attended, following the ceremony. I then had about 10 days with only a few Skype calls and other bits, and Molly had her teeth cleaned and a lump removed, feeling very sorry for herself afterwards. Then we stayed up at Chicheley again Monday 16th July to do some filming for the Open University Sexuality Alliance on Tuesday 17th, having a meal with Maddie, Alison and Junior on the Monday night, then filming all day Tuesday, with myself, Junior and Chloe Print-Lambert and partner Jordan being filmed. Sadly, I became poorly later on that week and ended up in The Royal London Hospital with sepsis, from the usual culprit, the E. Coli in my kidneys and Ileal Conduit, being really poorly. Fortunately they let me home on IV antibiotics, along wit IV antiemetics, IV fluids and IV Paracetamol, which I already have at home alongside my TPN, as I had a really important appointment on the Monday, and then on Thursday was going to WOMAD Festival, and I didn’t even have to ask the consultant, she literally said “you want to go home, don’t you?” and she made it happen. So I went to WOMAD still on IV antibiotics, which I was quite relieved about, as no way would I get poorly whilst there!
WOMAD was incredible, such an experience. Because Festival Spirit basically provide what is a hospital in a tent, including electricity, lighting, heating, cubicles, hard flooring, electric profiling beds, hoists, a tent for charging our wheelchairs and they even purchased a fridge purely for my TPN, so all my needs were catered for, I was able to be a young adult for once. My illness and disability almost faded into the background. Mum came with me and provided my care and it was so special to share that experience with her. Precious memories made. And the people there made it, the Festival Spirit team and volunteers, St Christopher’s Hospice and also the other young adults, including my friends Junior and Ravi, so it was a very special time and experience and I will forever cherish the memories and experiences I had there. I do hope to go again in future years, if they’ll have me! You can read all about WOMAD on the blog about it, here.
August started with care visits and other visits and appointments, before the first Trustee meeting for the Young Adult Complex Condition Alliance (YACCA), the charity I am currently in the process of setting up, which went extremely well – and was completely organised, start to finish, and chaired by me, and it went very well, so I was very proud I managed to pull it all off. I had some other Skype calls, visits and things, and Molly and I gave a demonstration at Bosom Pals Southend, which went extremely well.
September was full-on, as was the rest of the year to be honest. On 3rd September I finally got to meet Jessica Taylor-Bearman, who has Severe M.E. and who set up the charity Share a Star, after knowing Jessica online for years. We had a wonderful few hours chatting with her and husband Samuel. Tuesday 4th I had the Hospice UK People in Partnership meeting, another successful meeting, where we talked a lot about the Hospice UK conference coming up in November. It’s always great to see everyone, including Mandy Paine MBE, who is a wonderful friend and for whom Molly is able to alert to her diabetes and oxygen saturation – incredible. I had some calls, friend visits, care visits and meetings, then the Transition Taskforce North London Regional Action Group meeting at Haven House Children’s Hospice, then an appointment with my consultant for nutrition, I signed the final paperwork for my Personal Health Budget to start on 1st October, then we had the first NHS Peer Leadership Academy on 18th and 19th September, in Loughborough at Burleigh Court, so we travelled up on the Monday and stayed two nights, travelling home Wednesday evening. This PLA residential was fantastic, we kicked off the PLA, and we got to meet all the other participants and quickly made friends, what an incredible group of people they all are.
At the end of September, my Hickman Line fractured. Disaster. I had to be admitted to hospital over the weekend to await a new line placement.
On 1st October, my new Hickman Line was placed, in a very traumatic, rather disastrous procedure – due to no ones fault but my stupid body. I have my Hickman lines done awake, always have done, with local anaesthetic, having had (now) 9 lines in 7.5 years. I don’t find the procedure too bad, although it seems to get more difficult and traumatic every time; but nothing could’ve prepared me for this last one. Local anaesthetic always wears off very quickly in me, but it’s usually not an issue, as the line procedures usually take a maximum of around 45 minutes. An hour into this line insertion and we’d run out of local anaesthetic to use, we’d reached the maximum safe dose I could have – and yet, they hadn’t even reached the line, let alone removed it and placed a new one. When trying to do the procedure, the interventional radiologist encountered a thick ‘wall’ of scar tissue, covering the line from exit site to the vein site, and at the vein site itself, there were thick fibrous bands around the line and attached to the internal jugular vein. The radiologist seemed to be getting quite flustered, explaining he was unsure how he was going to get the line out at all, let alone get a new one in. I had to be sedated to continue with the procedure, as with no more local anaesthetic to use and me dependent on him placing a new line, I was sedated and it took them another hour and a half – in total two and a half hours from starting the procedure until they eventually finished – they had managed to cut through all the scar tissue, layer after layer, remove the old line and place a new one. I had my new line. Unfortunately, they gave me nitrous oxide whilst I was sedated – which, without fail, always makes me vomit – and as I was waking up from the sedation, when they were just stitching up the wounds, I vomited all over the open vein site and line exit site. not good. So I had to have a week of IV antibiotics to try and stave off an infection from setting into the neck, vein and line site. However, I had my new line and a prescription for IV Co-Amoxiclav for 7 days. I was extremely sore and somewhat distressed afterwards (which is not normal for me) but was allowed home that evening. I had planned a day out in London and heading over to an evening charity event for my birthday (2nd October, the next day), but due to how sore I was, I pulled out of the event and cancelled my plans and we just went for a meal locally to celebrate my birthday, although I was in a lot of pain, I was able to enjoy some family time.
Not the best start to the month, and not the best thing to happen just before my birthday, but never mind. On the 9th I had the East of England Transition Taskforce Regional Action Group, which I attended, some PHB meetings, a speaking engagement on Friday 12th October for IHUG, the Ipswich Hospital User Group, at their celebration event, delivering a speech about patient leadership and involvement, and also supporting their workshops. On Saturday 13th, I co-hosted a panel at the Muscular Dystrophy UK Conference as part of the Young Person’s Conference. Then on 15th we travelled up to Loughborough to Burleigh Court for the second residential of the NHS Peer Leadership Academy, on the 16th and 17th, which was fantastic. Then on the 23rd October we travelled up to Parliament for the launch of the report by the APPG on Children Who Need Palliative Care, organised by Together for Short Lives, and had a wonderful time seeing friends, colleagues and MPs, and I was delighted to meet Baroness Sal Brinton, President of the Liberal Democrats, with whom I had a great conversation.
Sadly then Molly became ill with pancreatitis, and spent a few days inpatient at the vets on drips, and she came home on the Saturday afternoon and on Sunday I spiked a 40˚ temperature so had to go to The Royal London where we discovered I had sepsis – specifically, urosepsis (from the E. Coli in my kidneys) – and it took a long time and a lot of intervention to stabilise me, more so than usual, and it took 48 hours for my temperature to get lower than 39.8. I also had the most horrendous headache, I don’t know what caused it, and that was making me vomit and it was just horrendous. Fortunately, my fever broke, the headache eased, my bloods were starting to trend down – my CRP had been just under 200 – and they allowed me to come home once I reached 24 hours afebrile. I came home and was on 10 days IV Co-Amoxiclav.
I took some time out to recover, as the sepsis knocked me hard, and didn’t start work again until 5th November when I had a teleconference to discuss our session at the Hospice UK conference, then had an OU Sexuality Alliance Skype call on the Tuesday, I had some care visits and appointments, then the third and final residential of the NHS Peer Leadership Academy on the 13th and 14th November (travelling up to Loughborough on the 12th), which was fantastic, I gave my presentation on the final day and then that wad the end of the PLA for Autumn 2018, and it was sad to think we all wouldn’t be in the same room together after that, as we’d had such an amazing time, but we’ve made friends for life.
On 15th November I had my appointment with Dr Quinlivan at the National Hospital for Neurology and Neurosurgery, Queen Square, in which she explained my muscle biopsy test results, showing a complex 1 deficiency, abnormal complex 4, ubiquinone deficiency and abnormal looking muscle under the microscope, showing that what I have is some form of Mitochondrial Disease, even though we don’t yet know which form of Mito I have.
Friday 16th November we had a meeting in London for a presentation on Julia Bahner’s research and a discussion about sex and disability, with some amazing people in the room, and I do hope we will all meet again and work together as we suggested in the meeting.
The following week I had some Skype calls and then did some filming on the Thursday for the Worldwide Hospice Palliative Care Alliance in aid of universal health coverage (UHC) day. I also completed my Level 2 Award in Independent Advocacy, which I am very proud of.
The following week it was the Hospice UK conference, where we had an absolutely amazing time, as I have described above. 2 (and a bit) days of seeing so many friends and making new connections, my speech and our session going really well and being very well attended considering it was the final session on the first day, so many interesting presentations and none more so than the final plenary delivered by Dr Kathryn Mannix, whom I got to meet, talk to and have a copy of her book signed. Just an amazing experience – albeit very tiring!
Thursday after Hospice UK we had a meal at the Shard with my friend Junior and his care team, which was wonderful.
3rd December I gave the first speech at the Healthcare Conferences UK “Caldicott Principles & Information Sharing in End of Life Care” conference, talking on “Working together to improve information sharing with families and carers, and across services at the end of life”, including, removing the barriers to information sharing at the end of life; working together across organisations; and working with, sharing information with and supporting families and carers.
4th December I spoke at the Redbridge End Of Life conference on transition and the young person’s experience, and also enjoyed listening to some fascinating presentations, especially the Macmillan and London Ambulance Service project.
6th December we had the launch and networking workshop with Together for Short Lives for our Improving Transitions for Young People Fund projects, where I represented the OU Sexuality Alliance and Hospice UK project alongside Dr Sarah Earle, which was very interesting – and managed to bump into Phillipa Sellars (St Christopher’s) and then Jess Thom (Touretteshero) on the way back to the van. The networking at the event was great, with Tracy and Sophie from Ty Hafan children’s hospice and myself and Sarah plotting a Ty Hafan visit for some young adult social and peer support and then staff training.
The following week was my final event of the year, where we gave a talk and demonstration to the Havering East Rotary Club, which went extremely well and resulted in a donation of £200 to Dog A.I.D. We had a wonderful time.
I also did an audio recording for an event raising money for Festival Spirit, which seemed to go down well.
Then, it was time to rest…and work from home…and end up a little poorly but never mind.
We had a quiet family Christmas and I am looking forward to 2019.