Lucy Watts was an avid champion of palliative care for so much of her life – giving a TEDx Talk, speaking to Dr Tedros from the World Health Organization, appearing in BBC documentaries. Yet she was badly let down by palliative care services at the end of her life. In our latest video series, ‘Lucy’s Legacy’, we hear Lucy’s mum, Kate, share her reflections on Lucy’s life and death. Today she reflects on some of Lucy’s biggest achievements.
“Lucy was nominated by Mary (the head tutor at The Children’s Support Services where Lucy took part in her GCSEs) and her team for The Princess Diana Award which she received. This is awarded because the trust believe that young people have the power to change the world. This extract was written by Mary as part of a tribute at Lucy’s funeral:
“This is a most prestigious award based on the belief that young people deserve to be recognised, valued and their accomplishments celebrated. It is awarded to exceptional and inspirational young people. Lucy had demonstrated courage, determination, and perseverance in the face of so much pain and disappointment, as the active life she had led was no more. Lucy never complained to her tutors about her illness, the isolation, missing out on the fun aspects of school. She inspired her tutors and everyone she met to work harder and do their best for her and others. We presented the award to her at home in a ceremony and a journalist recorded the occasion for a newspaper as to be given a Diana award is truly exceptional. Lucy’s place on the Diana Award Roll of Honour 2010 is a part of her legacy and stands as enduring inspiration for other young people.”
Lucy also received The Jack Petchey Achievement Award Scheme which recognises outstanding young people aged 11-25 across London and Essex. Sir Jack Petchey CBE wanted young people to raise their aspirations, believe in themselves and make a contribution to society.
We both felt abandoned when Lucy’s paediatric care ended abruptly. This led to Lucy working extremely hard and tirelessly on the transition from paediatrics to adult services. She campaigned for a better, smoother, more informed transition preparing the young adult by talking about this as a normal part of conversation both by parents, professionals and all services as early as possible. She campaigned for joint meetings with children’s and adult’s services at 14/15 so the young adult is comfortable with the process. They should be made to feel safe with their new adult team who they will be expected to converse with on their own as well as with their parents/carers.
Lucy’s first speech was given in 2013. The hospice nurse who had initially got Lucy admitted for TPN (Total Parenteral Nutrition) heard that the charity, Together for Short Lives, were looking for a young person to make an address in the House of Commons. This nurse asked Lucy if she would be prepared to make a speech. I just laughed because she wouldn’t even speak to the doctors, she always looked at me when they asked her a question waiting for me to answer. However, much to my surprise, Lucy said she’d like to make the speech and that was the first time she felt valued. When Lucy finished her speech it was met with a huge round of applause and so many people said how deeply her words had touched them. She spoke, very eloquently, ensuring transition was the main focus for young adolescents and their parents/carers and professionals and not just on the medical front but for social services and all other services involved too. Lucy had found her vocation and she didn’t look back.
This formed the main part of her initial campaigning and activism. The J’s Hospice were approached by the Open University (OU) to provide young adults for Professor Maddie Blackburn to interview regarding sex and sexuality for disabled young adults. In my desperation to keep Lucy alive, unlike the discussions I had with her older sister, it hadn’t occurred to me to have a real conversation with Lucy about relationships and sex. When Maddie came and started chatting to Lucy, I realised how much I had ignored this hugely important aspect for Lucy. I felt I had let Lucy down because I hadn’t spoken to her about relationships, being loved, not having an intimate relationship. Plus Lucy had missed out on conversations she would naturally have with her peers had she attended school and maintained friendship groups outside of the school environment. Maddie asked her to set up a group of disabled young adults on the internet. Lucy recruited many people who became part of this group of strong young adults who did not shy away from this difficult topic. This led to her attending many training sessions, courses and conferences where Lucy spoke passionately about this subject all over the country.
By 2014, following the formation of her urostomy, she had a good quality of life. From 2016 to September 2021 her drive and determination had taken her far beyond her expectations and she was working, giving speeches, attending events, travelling all over England and Wales, running two businesses – and all because she had an excellent quality of life provided by being on TPN, having the right medication under the guidance of the hospice. It was everything she wished for herself. Yes, it wasn’t easy but she could manage, she got up some mornings at 4.30am to get to an event that started in London at 9am, went on all day and perhaps not getting home until 8pm. She would spend the whole day sitting in her wheelchair. We travelled to conferences that would mean an overnight (sometimes 2 or 3 nights) stay which were always incredibly difficult for her but she never let it stop her need to spread the word about great care, the NHS, health budgets, palliative care, helping the OU with their Sexuality Alliance, working for the World Health Organisation to name but a few. In 2014 Lucy and her dog Molly were nominated for the prestigious “Friends for Life” competition held at Crufts. Lucy was thrilled to win this competition. It cemented the knowledge that she could achieve, especially with Molly at her side.
In 2016 she was awarded an MBE for her services to young people with disabilities. I was so proud. When she received the letter from Buckingham Palace I took it straight into the room for her to open. Lucy read the letter from the Queen and speechless, passed it to me. I had to re-read the letter several times to take in that she was nominated in the New Years Honours List to receive an MBE for Services to young people with disabilities. Lucy was only 22. We invited Lucy’s grandmother to the event which was on 9th June 2016. Both my mum and I were so proud. It was a beautiful day from start to finish. It also gave Lucy such a boost as she felt she had been recognised for all her efforts.
In January 2018 a World Health Organisation (WHO) Executive Board meeting was held. Dr Tedros heard a speech given by Dr Stephen Connor who read Lucy’s words regarding palliative care. Dr Tedros was so touched he requested a face-to-face meeting with Lucy which took place in February 2018. Under the guidance of the WHO, Lucy formed Palliative Care Voices network because she passionately believed that palliative care should not only be available in this country, but worldwide, especially in parts of the world where palliative care is not readily available nor accessible.
In September 2018 she received her Honorary Degree from the Open University for her commitment to public services. Yet another huge honour for her and again, my mum and I were so proud. This ceremony was held in September 2018 at the Barbican Theatre.
Lucy knew she wouldn’t live for a long time and was determined to make sure she didn’t waste a moment of her life. She wanted to ensure she could change people’s views for young disabled adults. Had Lucy not been unwell she would have gone into medicine, but this gave her an opportunity to change the world for the better. Lucy probably made a greater impact on this world than she ever would have as a doctor.
I was immensely proud of Lucy. Despite being in constant pain, she rarely complained. I was in awe of her sheer tenacity to make a difference for everyone and change people’s perception of disabled people. She worked incredibly hard 100% of the time she had available to her. Lucy worked so hard her whole adult life, despite the cruel hand she had been dealt. She overcame so many obstacles to make a difference. Like Lucy, I am conscious that her legacy will not continue. Even after less than a year, I feel like she didn’t exist except in my memory. I know that is not true because many organisations and professionals are doing things in Lucy’s name. These will hopefully form part of her legacy. If you go onto the internet and google Lucy’s name there are many entries for her, with YouTube holding many of her blogs and speeches. Lucy was a beautiful, focused and determined young woman who always gave of her best. Lucy was my daughter and I was constantly amazed and inspired by her. Whenever she gave a speech I always felt so proud.
Lucy was most proud of herself when she established her businesses and was able to give up receiving government benefits. This proved that she was contributing to society, had earned all the accolades and showed her consultants how much she could achieve with proper quality care. Coming off benefits gave Lucy her self esteem back and the knowledge that she was and had made a difference. Lucy was asked by other Clinical Commissioning Groups to help with difficult personal health budget cases and her paid work gave her a huge boost. The fact that her reputation was growing was music to her ears. I continued to receive calls for her help long after Lucy had passed away because of word of mouth. I wish she could’ve known how desperately her services were required.”
Watch Lucy’s Achievements – ‘What do you want do do with your life?’ here.
Acronyms:
TPN – Total Parenteral Nutrition
OU – Open University
WHO – World Health Organisation