What Can I Do For You?
I can undertake work in the following forms and areas of expertise, but I am always open to new ideas and different projects.
Please contact me via email and we can arrange to speak on the phone if you would like to.
- Copy for websites and booklets
- Keynote speeches
- After dinner speeches
- Motivational speeches
- Fundraising events
Speeches will be tailored to your requirements.
- TV and radio commentating and appearances
- Charity, online and factual videos
- Written media, articles, features
Areas of expertise:
I could do work in the following areas:
- Patient and Public Involvement
- Transition between child and adult services
- Palliative care for children (under 16) and young adults (16-30)
- Homecare packages inc. Personal Health Budgets, social care direct payments and Continuing Healthcare
- Complex care needs
- Patient self-care and self-management, support and training for patients to self-care
- Family/unpaid carers needs, support and carers assessments
- Improving hospital admissions, including the importance of free wifi (without restrictions), allowing relatives in for ward rounds to advocate for the patient or help the patient to make decisions, especially for recently transitioned young people who are making decisions themselves for the first time in their lives, and also the importance of hospitals having a certain number of fold down beds available for parents and relatives to stay with their loved one if needs are complex, they have special needs or the person is nearing end of life - so they don’t sleep on the cold, hard floor or sat up in a chair. I cannot have all my needs met unless my mum stays with me in hospital, and I know many others have the same problem, but my care package is removed when in hospital so without mum, 70% of my needs would go unmet.
- Centralised patient record portals and the difference they’d make
- Total Parenteral Nutrition and Hickman Lines, and the importance of proper aseptic technique when handling long-term central lines.
- Disability and disabled access
- Importance of the right wheelchair
- I can comment or write about any of my conditions, particularly Ehlers-Danlos Syndrome, Autonomic Neuropathy and Postural Orthostatic Tachycardia Syndrome, Chronic Intestinal Pseudo Obstruction, intestinal failure and life on TPN/HPN and life with two stomas. However I can also talk about brain tumours, stroke recovery and seizures as my mum has suffered from all three, the latter two stemming from surgery to remove a large brain tumour in May 2015.
- Assistance dogs
My work has led me to do many things, writing, speaking, appearing in videos, and media work including to, radio and written media. I am a competent writer, ever-improving but passionate public speaker, and thoroughly at home in front of the camera, and eloquently get points across through my writing, speaking and on camera or when being recorded. I thoroughly enjoy my work and welcome new projects, so please do get in touch if I can help you with a project or you want me to participate in a project or piece of work.
Writing wise, I have written blogs for many different places, including Scope, the Government Social Care blog, ehospice, the Hypermobility Syndromes Association (HMSA), the International Children's Palliative Care Network (ICPCN), Together for Short Lives as well as this blog which at the time of writing had over 242,000 views. I have written articles for magazines and newsletters, and written the foreword to three guidances as well as one book.
My public speaking started with my speech in Parliament at a charity reception for Together for Short Lives in November 2013, and in the last three years I have rapidly improved. Since that speech I have spoken at meetings at the Department of Health, fundraising events, committee meetings and conferences, gaining more confidence and learning how to better engage my audience. Charity videos I have appeared in for multiple charities, and this ranged from informally sharing my experience to scripted pieces.
Media work wise, I have appeared in a BBC Radio 4 The Listening Project episode with my mother, a BBC Three online documentary called Rest In Pixels, as well as The Alan Titchmarsh Show, Sky News, Look East, BBC Essex, BBC Radio 1 Newsbeat and more, and thoroughly enjoyed it all.
You can see some of my work in the following links:
National Advocacy Conference Keynote Speech
Rayleigh Trefoil Guild Speech:
J’s Hospice #ANurse4TheJs Campaign
(J’s video is all my own work)
Rest in Pixels
BBC Radio 4 The Listening Project
ICPCN - Palliative Care for Young Adults
Council for Disabled Children - Transition Video
Ideas, Projects and Goals
Work that I am interested in is written work, it'd be lovely to use my passion for writing and wrote articles and blogs regularly, and will happily write forewords as I have experience of writing them. Public speaking, I would love to become a professional speaker, giving after dinner and keynote speeches, motivational talks and also speaking at meetings, committees and conferences to educate others on topics I am experienced in talking about. I'd love to be able to go into schools and give speeches and to work with children and teenagers, educating them on disabilities and showing them that we can achieve our dreams and have a good life despite having challenges. I would like to do more TV, radio and filmed work, and I would also love to gain experience behind the camera since I am keen to get into making documentaries and short (or even full length) films.
Projects of my own I hope to fulfil:
I would like to write and have published my autobiography, as I love to share my story and to inspire others, and I think this will be a lovely way to do so.
I also thoroughly enjoy making videos and want to develop this to more than just an amateur's hobby, I'd like to branch out into documentaries and short films.
I would love to do TV and radio work, as I have thoroughly enjoyed what I've done so far.
Another idea of mine is to write stories for children modelled around myself and my assistance dog Molly, with a positive disabled role model as the titular character. As well as producing books or booklets for children which introduce them to medical procedures, interventions and scenarios such as visiting the doctor, staying in hospital, having an operation, bring put to sleep, having blood tests, having a feeding tube or stoma and so on. I love breaking down complex concepts, words and procedures into simple terms.