2019 Review Blog – What A Year!

Well, what a year 2019 has been. Not the best on the health front by any stretch of the imagination, but an incredible year in many other ways. This year is the year I was announced as the 9th most influential disabled person in Britain. This year is the year I got into paid employment (self-employment) and was able to close my claim for unemployment benefits and financially support myself. This year is the year I gave 37 speeches, including ticking off a bucket list item and giving a TEDx talk for TEDxNHS (speech should be posted online early February or thereabouts; hopefully) and fulfilling a dream I never, ever thought I’d have the opportunity to fulfil. This is the year I was invited to become a Fellow of the Royal Society of Arts, Manufacture and Commerce (FRSA) for my commitment to the rights of disabled people. This is the year I was chosen as a member of the NHS Assembly, a group which is tasked with overseeing the implementation of the NHS Long Term Plan and other work. This is the year I filmed a documentary with a large American media outlet, hoping it’ll be released sometime in the first half of next year. This year is the year we went on our first proper holiday since 2007, to an adapted property owned by the Lin Berwick Trust in Norfolk for a week, and also had a trip to Wales to see family, a trip to Brighton to stay with friends, and my second year of attending WOMAD Festival with Festival Spirit and St Christopher’s Hospice. 2019 is also the year that my PHB Phase 2 was signed off so I can start employing my own team of nurses and get the fresh start with the completely new team of nurses that we desperately want and need. This year is also, on a sad note, the year we lost my beloved Grandma, Dorothy Manley, who has played a huge role in my life in so many ways and of all people in my life, it was her I enjoyed making proud the most. I miss her so much, I keep thinking “I must tell Grandma that” only for it to dawn on me that she isn’t here anymore. Life just isn’t the same without her. I spoke at Grandma’s funeral, which is not included in the total number of speeches given this year, delivering my own speech about Grandma, our family and the relationship we shared, and then I read out the words of my cousin Charlotte, too. It’s been a year of towering highs and deep lows, and it’s another year I’ve survived, defying the odds, and another year where I’m able to give back and make a difference and to achieve things I never could’ve dreamed were possible. The life I live now, is certainly not the life I could ever have planned – irrelevant on my illness, the work I do and the life I lead was never a goal, it happened almost by chance, because one person had the courage to ask me what I wanted to do with however long I had left, and unbeknownst to me I had this unconscious need and thus blurted out that I wanted my life to mean something and I wanted to make a difference. Firstly on the basis of that conversation I was filmed for the hospice, then encouraged by the journalist working with the hospice who filmed me to start my blog, then offered my first speech by Together for Short Lives (TfSL) – if you knew me growing up right up to that very point, public speaking was my worst nightmare – but for whatever reason I accepted the role of speaker at that event; and I haven’t looked back since. What a life I’ve lived over the last 8 years, but especially the last 6+ years. 

I wanted to write this blog to focus on some of the highlights from this year, it will not be a day by day or week by week account of everything I’ve done and experienced, as I’ll still be writing this in 2021, but it’s a reflection on some of the highs and lows of what has largely been an incredible year, especially on the work front, and with some sad and unpleasant things thrown in. 

Firstly, my speaking has just taken off. 37 speeches given this year, meaning I have spoken in front of at least 2,800 people this year. I also spoke at Grandma’s funeral but don’t include that in the total. It’s just been an incredible year, and with a lot great feedback. My speeches are making an impact – encouraging and empowering people to make changes in their job or organisation to improve the care, experiences and lives of their patients. At one speech, an enteral feeding nurse said she would open up more advance care planning-style conversations around clinically assisted nutrition and hydration with enteral feeding patients, to understand their wishes for their lives and their care, and for if their health changes. Another professional, a commissioner, said she is going back to her CCG and to put transition to adulthood for young people with complex, long-term or life-limiting conditions on their agenda, as they only fund mental health transition support for young people moving into adult services in their area. A lot of people have said it has changed the way they think about their work or about different subjects, including professionals seeing that end of life conversations can actually be very empowering conversations for people, rather than just talking about something difficult, and others saying how useful my speeches about Personal Health Budgets are for understanding both the process and the logistics, but also the impact and benefit. Another professional said she will rethink how she deals with her own emotions around patients, and that it is okay to show emotion when talking about a difficult subject with a family – sometimes professionals showing their emotions, builds a greater connection between the patient (and/or family) and the professional. It’s wonderful when you feel like your words make a difference.

It’s still hard to believe I even give speeches – if you knew me 10 years ago, giving a speech would’ve been my idea of a worst nightmare. Now, it’s something I do for a living, and actually enjoy doing. My speaking itself is always improving, I have worked out a method for myself for my speeches that works well for me, and people often comment on the fact that I am very comfortable and able to use just the right amount of humour in my speeches. My first speech was spent reading my words off my papers and somewhat ‘hiding’ behind them, it wasn’t the greatest. I still keep notes and prompts – mainly to help me to plan for and to stick to time and to also help me in case I am having a bad day on the day meaning I am struggling to remember and keep my talk concise – I’d love to do away without the prompts completely, and sometimes I will give a speech totally off the cuff, which also receives very good feedback, but I often at the very least need some kind of prompt for words and sometimes reminding what order my slides are in — my memory (especially short term) is not the best, which I put down to my medication and fatigue and the fact I have so much going on medically, and also since May daily fevers are added into the mix. However, what I do works for me and my speeches have the desired impact, which is the main thing. 

I also ticked a big speaking goal/item off my bucket list – I gave a TEDx talk! Ever since I wrote my first bucket list, “Give a TEDx talk” was on it. It’s been on every one. It’s something I never, ever dreamed I would tick off, I felt it was a pipe dream — I’d never be good enough to be chosen for a TEDx talk, not me. Then early this year applications were open to speak at TEDxNHS 2019, and I thought I’d apply – then had massive imposter syndrome (I feel that about everything I do) and nearly didn’t send the application, but decided “what have I got to lose?”. So I sent it. I then became worried the organisers would wonder why on earth I had applied and who did I think I was, but to the contrary, I was invited to an interview and then was delighted to be chosen. In July the mentoring/coaching started, and by mid September my speech was written and signed off and ready for me to learn. The day itself came up so fast. It was an incredible day. My speech itself went well, I did have to keep my prompts as I just couldn’t remember the entire speech (as mentioned above – opioids, fatigue, my illnesses, daily fevers all complicating my ability to remember things such as long pieces of text) but it went as well as it could’ve done – even if Molly did snap at a fly half way through! The fly had been attacking speakers all day. Trust Molly – I just think she did it to make 100% certain that she would be remembered! Will she be immortalised as “The Assistance Dog who catches flies” – some people actually tweeted about that on the day. My speech had a great reception, so much interaction on twitter, and it’s a day I’ll never forget. The video isn’t online yet, we’re launching early February, and I will share it with everyone once it is online. It was a truly magical day. A day I’ll never forget. 

You can read my blog about the TEDxNHS talk by clicking here.

Other speeches included at the NHS Elect conference on patient experience, the Hospice UK Dying for Change conference, speaking a the HFMA (Health Financial Managers Association) Eastern Branch Conference on Personal Health Budgets, King George’s Hospital on communication and advance care planning and also Southend Hospital for a presentation on communication and advance care planning too, and I co-designed, co-facilitated and spoke at an event for Mid and South Essex STP and Essex County Council and local organisations around personalised care and more specifically, Personal Health Budgets, as well as a speech and Q&A on Personal Health Budgets for Brighton and Hove CCG. I delivered speeches at three Healthcare Conferences UK conferences of which two were on Care of Dying Adults in The Last Days of Life and the other on Clinically Assisted Nutrition and Hydration, various personalised care events including a QNI workshop, regional PHB network speeches, Essex End of Life Care conference and more, and also delivered the main speech at a CYPMeFirst Communication Champions Event. 

In June I appeared on the BBC Ouch podcast, the BBC’s disability podcast, which was a fantastic experience, you can listen to the episode (HERE) and later that same day I went to the Wellcome Trust building in London for the launch of the Lancet Guidance Launch on Communicating With A Child About Their Own or A Parent’s Life-Threatening Condition, speaking at the launch and that was very well received, and it was wonderful to look in the report and see the parts I contributed to in there. I was also profiled in the Lancet Child and Adolescent Health journal in October (click here to see the profile). Our Open University Sexuality Alliance (OU-SA) work is progressing nicely and we filmed in April and launched our open educational resources in August, these are an interactive resource and two listicle resources which are freely available to access on the Open University OpenLearn platform: access the “Let’s talk about sex, intimacy and relationships…” interactive resource (HERE), the “Nine top tips on talking about sex… for young people with a life-limiting or life-threatening condition” listicle resource (HERE) and the “Five things to know about being disabled and LGBTQ” listicle resource (HERE).  We spoke at the Hospice UK Dying for Change conference in November to launch our resources and publicise our work, including myself and Leah Booth taking about the resources, about coproduction with young people and about why this research and this work matters to us. You can watch the speech below or on the link (click here). Another piece of work I did was facilitating and speaking at a Schwartz Round at Saint Francis Hospice (in Havering-atte-Bower) around intimacy at end of life, which was well received and very interesting to hear the staff bring up complex and challenging experiences they’ve had around this topic and to help them think about and reflect on their own experiences and help them to know how to move forward in future. I delivered a few different training events, including for Haven House Children’s Hospice for a sexuality awareness session, as well as physician training at St Oswald’s Hospice, and also ran a workshop and spoke at the Gold Standards Framework Event – you can watch my GSF speech by clicking here. I have enjoyed being part of the NHS England Personalised Care Strategic Coproduction Group, which I joined following completing the NHS Peer Leadership Academy in Autumn 2018. It’s been an enjoyable year with lots of work, contributing to the personalised care shift in relationship graphics, the disability training, the coproduction model, also being co-opted onto the Primary Care Networks Structured Medicine Review board, trying to build the service specification to be agreed as part of Primary Care Networks through the new GP contracts, which was very interesting. I also became part of the NHS England End of Life Commissioning Steering Group, bringing the patient voice to the group. Research projects are going well, we’ve sadly missed out on a few bids for the MAGICYL project (www.magicyl.com) around dignity therapy for children and young people with life-limiting conditions but we have another application in for consideration for funding; Living Life To The Fullest (www.livinglifetothefullest.org) continues to go well, we have analysed our research and are writing up our findings and also we’re going to be writing a book on co-production; then I have another research project in development around shared decision making; another research project around coproduction and children and young people’s participation in health; another project around digital lives and legacies which sadly wasn’t funded; a further project around young disabled people who are LGBTQ+ which also didn’t get funded; and another project around digital technologies for disabled people which we’re awaiting news for. In November I was asked by St Elizabeth Hospice if I’d be interested in becoming a Young Shadow Trustee, a non-voting role whereby you are able to contribute to the management and governance of the hospice as a charity and learn all about the intricacies, gaining skills and knowledge, but without being formally responsible for the charity as a normal Trustee would be. I jumped at the chance and look forward to starting this role in 2020. I have been a Trustee of a charity before, I was a Trustee for the Pseudo Obstruction Research Trust (PORT), a small medical research charity from 2014 to 2019, but I relish the opportunity to learn more about charity and hospice governance, strategic decision-making, public benefit, steering the charity in the right direction and ensuring it meets its own constituted aims and objectives but also progresses the charity forward to stay afloat in difficult times within the palliative care sector and indeed the charity sector, and to be able to contribute to the hospice the lived experience of patients and especially young adults like me. In July 2019, I spent a day at Cass Business School evaluating the project ideas of the students on the MSc in Voluntary Sector Management, with Hospice UK, and I have been asked to do that again in 2020 too. And so, so much more, but I won’t bore you by going through it all.

This year I was able to do something I never, ever thought possible. I left education aged 17 — I did my GCSEs at 16 from home, too poorly to go to school, then started AS Levels at college doing 1 hour per day, but had to pull out 6 months into my AS Levels — and since the age of 17 have been dependent on Employment and Support Allowance (ESA) which is an unemployment benefit you get if you are unable to work long-term. Initially, I never even dreamed of having a job, so far from me and my health and capability was the ability to work, I found it too painful to dream of working when I knew – and would forever be reminded – that it was impossible, that it was never going to happen. I felt that if I didn’t want it and didn’t dream of it, somehow the pain of not being able to work was less than if I dreamt of working and had the constant reminder and realisation it was never going to happen. However, after four or five years, I felt that yearning inside of me that I wanted to work. I began dreaming of working, going on websites looking at jobs, brainstorming what on earth I could possibly do, but my brain would then remind me it was totally impossible. Also, what did I have to give to an employer? Was I really worthy of them making adjustments to allow me to work when I had nothing to give? Why on earth would people employ me? What would I ever be able to contribute to the workplace? Not only that, but all the jobs I looked at wouldn’t work for various reasons – I couldn’t (still can’t) travel into an office every day to work. I needed flexible hours and flexible working to fit in with my health and needs. I needed jobs that didn’t require traveling. I needed jobs that didn’t require a degree or years of experience in that field, sector or job role — I had no skills or knowledge of working in any sectors or doing any roles, so I couldn’t tick any of the criteria in applications. I needed a job that would accept my health and the impact it has on my ability to do things. I needed a job where it could be done largely from home, without fixed/set hours. I needed a job that could adapt and change in its routine and pattern to fit in with me and my health — my health can change so much day to day. Who on earth was going to employ me, and how on earth would I fulfil the role and the terms of my contract? It just seemed impossible. I put it on the back burner, on the ‘reject’ pile, as a pipe dream that would never be realised.

And then it happened. Aged 25, I got offered my first regular (albeit self-employed) job, that I started just before my 26th birthday. In the summer, I went away on our second festival trip with Festival Spirit, the charity who take severely disabled and life-limited adults (especially young adults) like me to festivals by providing totally accessible accommodation in a tent – individual cubicles with an electric profiling bed, a carer bed, then a social area, a larger carer area, electricity, lighting, a heater, mobile hoists, hard flooring, a medication fridge, plus a wheelchair charging area, separate kitchen tent and more. The Trustees of Festival Spirit had told a nurse who takes us with the hospice to the festival with Festival Spirit, that their administrator was leaving. Phillipa had told them to ask me if I wanted to do it, since I do it for other charities for free so why not pay me to do it so they have an administrator and I have a job? At WOMAD in July, they asked me if I would be interested, and I said yes – no hesitation. Regular paid work that would enable me to get off benefits. Just what I’d always wanted! So in September we met formally to discuss my role and signed my contract and I am now a self-employed administrator, also managing the comms, social media, marketing, fundraising and other aspects, for a charity I love and who have given me so much, and to get regular paid work and a regular income meaning I can be financially self-sufficient. I am settling into my role now, so prepare to be bombarded with Festival Spirit posts and things shared on social media! To find out more, go to https://www.festivalspirit.org. The truth is, I had been turning down paid work for over a year because I couldn’t accept payment due to my ESA limits as it’d exceed my weekly earning limit, but it wasn’t regular work and a steady income meaning I couldn’t stop my ESA in order to do the work as I wouldn’t have a regular income to live off. I had bits of paid work offered here and there – but nothing regular that was sufficient to manage without ESA. So, now that I have my role with Festival Spirit, I am off ESA and am financially self sufficient, and can do as much paid work as I like and as I can manage. This does not mean my health is any less severe or complex, I just choose to spend the time and energy I do have making a difference and earning my own wage. I still have bad days, heck I still have bad weeks and bad months, but I am able to do the work I do as it’s flexible and I can fit it in around my health and needs. So I finally, at the age of 26, have my first job. I also have a casual employed role with the University of Sheffield, and I cannot tell you how exciting it was when I got my first pay slip from Sheffield, I literally want to frame it as it’s such a huge milestone for me. I never, ever thought I’d be able to work and get off benefits, but look at me now — it’s just incredible. I am a workaholic and I love what I do. I wish it meant my illness is better and I am less sick and less debilitated, but I am not – I still sleep in until lunchtime on days when I have the ability to do so, I still frequently fall asleep during the day, I sleep in the van to and from events, I have to fit it in around everything and I still struggle, but it’s so worth it. I am making it work, and I love doing so. 

On the work front, I am also being paid to provide PHB Brokerage to a client in Manchester commissioned by the CCG, I am now offering Independent Advocacy services, especially to people needing support through the Personal Health Budget (PHB) process, as well as all my other paid services: training, workshops, speaking, project management, comms, social media management, admin, consultancy and strategic support. So let me know if I can help you or your organisation (contact me!).

On a personal level also, we’d not had a holiday since 2007 and we were finally able to go on our first holiday in 12 years. Except, we ended up going away 4 times! We had a long weekend trip to Wales in April, Norfolk (proper holiday) for a week in June, a long weekend in Brighton with friends in early July, and then WOMAD Festival at the end of July. So aside from WOMAD 2018, we’d not had a single holiday for 12 years, then we go away four times in one year! We had a wonderful time during all four trips, but Norfolk was very special. Me and mum (and Molly of course), 1 week away on our own in Norfolk, going to Thetford Forest, Holkam Beach (couldn’t get on/near the beach though, we just went round the nature reserve) and various other places, saw friends and had a wonderful time. It was very very special for us, and much-needed. We’ve booked to go back next year. The property we stayed in is owned by the Lin Berwick Trust, and is a proper adapted properly with a twin profiling bed room downstairs with hoist, large wet room with every type of accessible bathroom equipment one could think of, and access onto the garden, open plan kitchen, lounge diner, then (inaccessible to wheelchair users) a double room and a twin room upstairs. I intend on making a video about this some time soon, I mean to do it after we went but never got around to it. Our Welsh trip was special, we got to meet Amy-Claire and Caroline Davies, as well as other ex Ty Hafan young adults, plus to see Sophie Williams, Transition Lead at Ty Hafan, and spend some time with her, and we got to spend time with our Welsh family which was very special, as well as to meet my friend Louise Roberts which was very very special. We had a fabulous time. Then in Brighton with Maddie and Paul, we had a fantastic weekend, we went down the same weekend as Brighton Disability Pride so we had an Open University Sexuality Alliance stand at the Pride, and we spent lots of time with Maddie and Paul too – they’re friends we met through work, but family by choice, they really are special people to us. When I got my Honorary Masters from the OU, Maddie and Paul were in the front row and were so delighted and moved at me getting my certificate and delivering my speech that someone sitting behind them said they must be so proud of their daughter! And the lovely thing was, they were so honoured to have been thought of as my parents. They are very special to us. We hope to do another Brighton Trip again this coming year. We would also love to go back to Wales again this coming year. Last but not least WOMAD, which was again very good, we laughed so much through the weekend and had such a great time — it’s the one time in the year where I get to be a proper young adult. That means so much to us, for me to just be like my peers, for once. So it was a busy year in terms of trips away – we also had a stay at Chicheley Hall in Milton Keynes for the OU-SA resource filming in April, an overnight stay ahead of TEDxNHS in October, we had the 3 night/4 day stay in a hotel for Hospice UK conference in Liverpool in November, our overnight stay at the Leonard Hotel early December ahead of the NHS Elect conference, so busy on a work front too. 

I know this is a very long post, well done if you’ve got this far! I just wanted to reflect on an incredible year. It really has been an unforgettable year. Thank you to everyone who has supported me/us, you all matter so much to us and we are so grateful for your support. The saying ‘it takes a village’ is true, and in my case, it feels like ‘it takes a country’ as so many people have contributed to me getting to where I am today, some have made a massive contribution and huge impact over a long period of time, others have made a small – but nonetheless valued and significant – contribution to my life, and every one of you are appreciated. So – thank you. Truly. I don’t say things I don’t mean, and I value and celebrate everyone who has played a part in me succeeding in life and reaching the heights I’ve reached. Most of all, thank you to my family, especially my wonderful sister Victoria, whom I love so dearly and value her support – and her ability to make me laugh even if I am crying, and above all, my amazing, selfless, incredible, generous, supportive mother, the central person in my life without whom my life, my survival, my happiness and my achievements would not have happened. She makes everything possible. Thank you, mum. You are loved more than you know, and you are the most amazing person in the world, even though you cannot see it. 

Looking To The Future…

Looking ahead to 2020, and a new decade, I have a few goals I’d like to achieve:

• To move forward with my charity, YACCA, get charity registration and launch
• To write a book
• To grow my business/work so I am earning quite well
• To get a speaker’s agent
• To continue my education and personal/professional development:
  • To do my Level 3 Diploma in Independent Advocacy;
  • To undertake day or short courses to develop my knowledge and skills (I have some booked already)
  • And/or to do a qualification in training, or a begin (I won’t finish it in 2020) a qualification in coaching or mentoring.
• To blog regularly
• To make more videos and to upload regularly
• To pursue some of my personal projects (all will be revealed!)
• To live life as fully as possible, to keep defying my prognosis and to survive as long as possible!