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About Lucy

Lucy Watts MBE is a young adult with a life-limiting condition. A passionate advocate for patients, especially those with complex health needs, life-limiting conditions, those needing palliative care and young people in transition, Lucy has proved herself a formidable voice in healthcare. A member of the NHS Assembly, various committees, running patient involvement and advocacy groups and working closely with a number of charities, Lucy was awarded an MBE at the tender age of 22 and was recently voted 9th most influential disabled person in Britain. Lucy aspires always to make a difference and use her experiences constructively to benefit others. 

Lucy is a prominent patient advocate, disability activist, speaker, and social entrepreneur. Recently named the 9th most influential disabled person in Britain, Lucy devotes her life to making a difference, effecting change within the world of healthcare, palliative care and disability, and making constructive use of her experiences to improve the lives and experiences of others.

Her work takes on many forms: speaking engagements, committee membership, consultancy, patient advocacy, campaigning, research collaborator and co-researcher, charity ambassador and trustee, patient involvement facilitator and group/network manager, blogger, media commentator, peer support and mentoring, independent advocacy and much, much more.

Lucy includes her current roles further down this page, current roles include being a member of the NHS Assembly, the NHS England Strategic Co-production Group and two Transition Regional Action Groups, being involved with research projects as a co-researcher including Living Life To The Fullest (ESRC-funded) and the MAGICYL Dignity Therapy Project(s) and , and is soon to take up a Trustee role for a hospice.

Also, in 2019, Lucy was able to secure sufficient paid work to manage off unemployment benefits – something she never could’ve conceived would’ve been possible – and she now works in a self-employed capacity for the charity Festival Spirit, and works with other clients on time-limited projects or pieces of work, including paid speaking engagements, communications work, project management, training and workshops (including in the role of facilitator), administrative roles, proof reading, copywriting, and to set up patient involvement groups, digital patient or professional networks and youth advisory groups. If you may be interested in purchasing Lucy’s services, or even have an employed or self-employed job role that you might like Lucy to consider, do get in touch with her using the contact form on the contact page (click here).

Lucy does all of the above despite living with a life-limiting illness, having outlived all prognoses she’s had, and having complex medical needs and a severe disability. Lucy’s condition means she relies on 24 hour care, for which she manages a team of specially-trained nurses and care workers (known as Personal Assistants or PAs) through a Personal Health Budget to enable her to live at home and to live life to its fullest. If you may be interested in joining Lucy’s nursing and care team, check out her website WorkWithMe.lucy-watts.co.uk.

Work – By Subject / Issue / Area

Healthcare – NHS

 

Palliative Care, Hospice and End Of Life – UK

 

Palliative Care – Global

Lucy works to increase access to palliative care (including as part of universal health coverage) internationally, Lucy works as an independent consultant for the Worldwide Hospice Palliative Care Alliance.

Lucy is the founder of the international patient and carer advocacy network

 

Young People’s Health (including Transition to Adulthood)

Lucy is a prominent disability and health advocate, activist and consultant. She’s a committed individual who dedicates her time to making a difference for others. As a disabled young woman, Lucy has to overcome a wide variety of barriers, not least the low expectations of disabled people by others and the lack of accessibility, as well as living with a complex, life-limiting illness causing complex medical needs. Lucy is not one to allow barriers to get in the way and has created a life for herself that is enjoyable and fulfilling and contributes to society.

Lucy’s work spans various topics, issues and roles, including as a paid consultant, a speaker, an Ambassador for various charities, Trusteeships, committee member, research collaborator, peer mentor and patient leader. A list of her roles can be found below. Lucy’s work originated from a conversation with her palliative care nurse in 2011. Whilst doing Lucy’s advance care (end of life) planning, Lucy suddenly and unexpectedly (even to herself) exclaimed that she was scared that she’s die and be forgotten, that nothing would be different or better because of her and that her life wouldn’t have meant anything, that she wanted to make a difference. This conversation would transform her life. Lucy had, at the time, just had to let go of the dream of becoming a doctor that she’d geared her life towards from an early age, due to her illness and disability having progressed to the point that she wouldn’t be able to fulfil that dream, and Lucy had lost her focus in life. The hospice supporting Lucy asked her to do some filming and Lucy accepted, also being encouraged by a journalist volunteering at the hospice to start a blog, which Lucy finally started in 2012 (Lucy’s Light). She did some more filming for the hospice a year later, but it wasn’t enough. Then, Lucy’s palliative care nurse heard that the charity Together for Short Lives (TfSL) were looking for young people to join their newly created Young Ambassadors Network, known as the Young Avengers, as well as looking for a young person to speak at their reception in the House of Commons. Despite the fact that Lucy had never given a speech before, and previously having always avoided being centre of attention, Lucy accepted the opportunity. This speech took place in November 2013 and Lucy delivered her speech, finishing to a round of applause, and having the amazing feeling of achievement.  This was a pivotal moment in Lucy’s life; she’d found her purpose.

 

Lucy’s honours and awards include:

Lucy is a prominent disability and health advocate, activist and consultant. She’s a committed individual who dedicates her time to making a difference for others. As a disabled young woman, Lucy has to overcome a wide variety of barriers, not least the low expectations of disabled people by others and the lack of accessibility, as well as living with a complex, life-limiting illness causing complex medical needs. Lucy is not one to allow barriers to get in the way and has created a life for herself that is enjoyable and fulfilling and contributes to society.

Lucy’s work spans various topics, issues and roles, including as a paid consultant, a speaker, an Ambassador for various charities, Trusteeships, committee member, research collaborator, peer mentor and patient leader. A list of her roles can be found below. Lucy’s work originated from a conversation with her palliative care nurse in 2011. Whilst doing Lucy’s advance care (end of life) planning, Lucy suddenly and unexpectedly (even to herself) exclaimed that she was scared that she’s die and be forgotten, that nothing would be different or better because of her and that her life wouldn’t have meant anything, that she wanted to make a difference. This conversation would transform her life. Lucy had, at the time, just had to let go of the dream of becoming a doctor that she’d geared her life towards from an early age, due to her illness and disability having progressed to the point that she wouldn’t be able to fulfil that dream, and Lucy had lost her focus in life. The hospice supporting Lucy asked her to do some filming and Lucy accepted, also being encouraged by a journalist volunteering at the hospice to start a blog, which Lucy finally started in 2012 (Lucy’s Light). She did some more filming for the hospice a year later, but it wasn’t enough. Then, Lucy’s palliative care nurse heard that the charity Together for Short Lives (TfSL) were looking for young people to join their newly created Young Ambassadors Network, known as the Young Avengers, as well as looking for a young person to speak at their reception in the House of Commons. Despite the fact that Lucy had never given a speech before, and previously having always avoided being centre of attention, Lucy accepted the opportunity. This speech took place in November 2013 and Lucy delivered her speech, finishing to a round of applause, and having the amazing feeling of achievement.  This was a pivotal moment in Lucy’s life; she’d found her purpose.

Lucy’s Illness and Disability:

Lucy lives with a life-limiting condition, a rare neuromuscular disease that has recently been narrowed done to being a rare form of Mitochondrial Disease, exactly what the specific form of “Mito” and gene mutation are is as yet unknown. This has caused multiple organ failure and complications affecting most organs and body systems, necessitating intravenous nutrition (TPN) and medication, various interventions, devices and surgically created stomas, as well as being dependent on the use of an electric wheelchair, and requiring round the clock care. Lucy has exceeded her prognosis and has benefitted from palliative care for eight years. 

Lucy had health problems from birth and regularly saw medical professionals but managed to live a somewhat normal life until she became completely disabled and seriously ill at the age of 14. At 14 she needed a wheelchair for mobility and became housebound and soon after, completely bed bound, requiring round the clock care. Despite this, she was determined to do her GCSEs, 10 of them, at the same time as her former peers, which she achieved with 6 hours per week home tuition and hours of self-directed learning, gaining all 10 GCSEs at A* to C grade, consisting of an A* in Sociology, A in English, Biology and Physics, B in Maths and Chemistry, C in French and two distinctions and a pass in IT. Lucy started college part time in the sciences, but was forced to give this up 6 months later. 

Lucy’s condition is extremely complex and she depends on a lot of intervention to survive. Over the years, Lucy’s condition has progressed and become more fragile and increasingly difficult to manage, indeed many times Lucy has suffered various complications and battles with sepsis, being lucky to survive. Her condition is progressive and it will shorten her lifespan, in fact in 2012 she was told she wasn’t expected to live another 5 years. She’s still here, however, and determined to continue defying the odds. 

Lucy’s honours and awards include:

  • Member of the Most Excellent Order of the British Empire (MBE) for services to young people with disabilities in the 2016 New Years Honours
  • Honorary Degree of Master of the University (MUniv) from the Open University for commitment to public services (2018)
  • Shaw Trust Disability Power 100 List 2018 – recognising the 100 most influential disabled people in Britain
  • Became a Fellow of the Royal Society for the encouragement of Arts, Manufactures and Commerce (FRSA) in February 2019
  • Runner-up for the 2018 Queen’s Young Leaders
  • Health Service Journal Top 50 Patient Leader (2015)
  • Jack Petchey Award for Achievement (2010)
  • Diana Award for achievement and being a positive role model (2010)

Current Roles:

  • Ambassador/Young Avenger for Together for Short Lives
  • Global Youth Ambassador for the International Children’s Palliative Care Network
  • Trustee of the Pseudo Obstruction Research Trust
  • Ambassador for Dreams Come True
  • Member of the Open University Sexuality Alliance – & Founder & Chair of the Young Advisory Group “AdversiTeam”
  • People in Partnership Forum Member for Hospice UK
  • Trailblazer for Muscular Dystrophy UK
  • Patient & Young People’s Lead for the Digital Legacy Association
  • Member of the NHS England Children Complex Needs & SEND Board (CCN SEND)
  • Lead Co-Researcher for Living Life To The Fullest
  • Patient Reviewer for the British Medical Journal
  • Patient Partnership Panel Member for the British Medical Journal
  • Independent Consultant for the Worldwide Hospice Palliative Care Alliance
  • Co-Researcher for the Dignity Therapy Research Project (MAGICYL)
  • Founder of Palliative Care Voices
  • Member of the Transition Taskforce East of England Regional Action Group
  • Member of the Transition Taskforce North London Regional Action Group
  • Young Person’s Representative for the Ofsted & Care Quality Commission External Board for SEND Area Inspections
  • Member of the NHS Peer Leadership Academy (2018 intake)
  • Huffington Post blogger
  • Blogger at Lucy’s Light
  • Affiliate Member of iHuman (The Research Institute for the Study of the Human at the University of Sheffield)
  • Include Me TOO Ambassador
  • Founder of the Young Adult Complex Condition Alliance (YACCA)
  • #MedLearn Ambassador
  • ehospice contributor
  • Member of the NHS Peer Leadership Academy Autumn 2018
  • Member of the NHS England Personalised Care Strategic Coproduction Group
  • Young Ambassador – Dog Assistance in Disability (Dog A.I.D.)

Experience

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Lucy’s Illness and Disability:

Lucy lives with a life-limiting condition with complications affecting most organs and systems, complex medical needs requiring intensive intervention, and she is physically disabled. Her primary condition is undiagnosed, and to use the words of Lucy’s neuromuscular consultant it is “rare, ultra-rare or unique”. Tests are suggestive of a Mitochondrial Disease and shows features on a muscle biopsy of being a form of “Mito”, along with ubiquinone and carnitine deficiencies and myopathy identified on EMG testing, but no defining features that could pinpoint an exact diagnosis, and her mitochondrial DNA (mDNA) is clear of mutations, showing us that her condition is a defect in nuclear DNA (nDNA). If not a form of Mitochondrial Disease, it will be some other form of ultra-rare or unique genetic neuromuscular condition, with multi-systemic complications affecting most organs and systems, and with some overlap features of a connective tissue disorder. Lucy was diagnosed in her teenage years with hypermobile Ehlers-Danlos Syndrome (hEDS) but there is some agreement that it likely isn’t hEDS at all, since Lucy’s hypermobility has always related to weak muscles more than lax ligaments (her long-term childhood physiotherapist identified muscle weakness as the primary cause of the joint laxity rather than an issue with her ligaments), but that if the hEDS diagnosis is correct, that EDS is definitely not Lucy’s primary diagnosis or issue (if she has hEDS in the first place). Unless or until the neuromuscular disease is identified, little will be known. Lucy’s genome has been sequenced as part of the 100,000 Genomes Project (as was her mother’s for comparison) but as yet has not turned up a result. It is likely Lucy won’t receive a diagnosis in her lifetime, but hopes it will help others in future.

Lucy’s condition has caused multiple organ failure and complications affecting most organs and body systems, necessitating intravenous nutrition (TPN) and medication, various interventions, devices and surgically created stomas, as well as being dependent on the use of an electric wheelchair, and requiring round the clock care.

Lucy has far exceeded her original prognosis and subsequent prognoses, originally not being expected to reach her 18th birthday, and then once she turned 18, not being expected to live beyond her early 20s. Lucy turned 26 in October 2019, and is determined to continue outliving her prognosis (or “expiry date” as she jokingly calls it), explaining she still has a lot of living yet to do – and doesn’t have time to die given her busy schedule. Lucy has been under the care of palliative care and a hospice since the age of 17 and credits them with the life she is now able to lead, both in terms of managing her symptoms most effectively that gives Lucy the quality of life she has, the support the hospice and palliative care team have provided to Lucy’s other consultants, showing them that the absence of a cure does not cause the absence of good care, and also helping Lucy to plan for her end of life and death, doing her first advance care plan at 17. This end of life planning conversation directly led to Lucy beginning her advocacy and speaking work, because Lucy’s nurse asked Lucy what she wanted to do now with whatever time she had left and Lucy expressed a wish to make a difference, following which Lucy’s palliative care nurse began finding ways to help Lucy achieve her goal.

Lucy was born with her condition and struggled with various symptoms and complications from birth, including having a colorectal nurse visit her three times per week until she started school to try and get Lucy’s bowel working properly, needing treatment on her eyes, needing podiatry and chiropody input throughout her life, needing regular physiotherapy which she had from age 10, and always eating a restricted diet and struggling more and needing more help than her peers, but lived a relatively normal life, going to school, doing other activities and horse riding, but always struggled with weak muscles and medical problems that made her life more difficult and meant she needed more help compared to her peers – Lucy always knew she was different from her peers – and she needed extra help including because she was never able to brush, wash or style her own hair, and needing help getting dressed, needing more help the older she became. Lucy’s condition progressed slowly for the first 7 years of her life, then suddenly started to progress more rapidly, and then by age 14 her body had completely given up, she had multiple organ failure, was dependent on a wheelchair and then quickly became completely bed bound and began relying on a lot of interventions to survive – NG feeds age 15, PEG feeds age 16, intermittent catheterisation at 16, intensive bowel support from age 16, jejunal feeding (via PEGJ) at 17, then 7 months later, became dependent on Total Parenteral Nutrition (TPN) via Hickman Line, at 18 she had her Ileostomy formed, at 19 had a suprapubic catheter placed, and the day after she turned 21, she had her Urostomy (Ileal Conduit) formed.

Lucy is a prominent disability and health advocate, activist and consultant. She’s a committed individual who dedicates her time to making a difference for others. As a disabled young woman, Lucy has to overcome a wide variety of barriers, not least the low expectations of disabled people by others and the lack of accessibility, as well as living with a complex, life-limiting illness causing complex medical needs. Lucy is not one to allow barriers to get in the way and has created a life for herself that is enjoyable and fulfilling and contributes to society.

Lucy’s work spans various topics, issues and roles, including as a paid consultant, a speaker, an Ambassador for various charities, Trusteeships, committee member, research collaborator, peer mentor and patient leader. A list of her roles can be found below. Lucy’s work originated from a conversation with her palliative care nurse in 2011. Whilst doing Lucy’s advance care (end of life) planning, Lucy suddenly and unexpectedly (even to herself) exclaimed that she was scared that she’s die and be forgotten, that nothing would be different or better because of her and that her life wouldn’t have meant anything, that she wanted to make a difference. This conversation would transform her life. Lucy had, at the time, just had to let go of the dream of becoming a doctor that she’d geared her life towards from an early age, due to her illness and disability having progressed to the point that she wouldn’t be able to fulfil that dream, and Lucy had lost her focus in life. The hospice supporting Lucy asked her to do some filming and Lucy accepted, also being encouraged by a journalist volunteering at the hospice to start a blog, which Lucy finally started in 2012 (Lucy’s Light). She did some more filming for the hospice a year later, but it wasn’t enough. Then, Lucy’s palliative care nurse heard that the charity Together for Short Lives (TfSL) were looking for young people to join their newly created Young Ambassadors Network, known as the Young Avengers, as well as looking for a young person to speak at their reception in the House of Commons. Despite the fact that Lucy had never given a speech before, and previously having always avoided being centre of attention, Lucy accepted the opportunity. This speech took place in November 2013 and Lucy delivered her speech, finishing to a round of applause, and having the amazing feeling of achievement.  This was a pivotal moment in Lucy’s life; she’d found her purpose.

Lucy’s Illness and Disability:

Lucy lives with a life-limiting condition, a rare neuromuscular disease that has recently been narrowed done to being a rare form of Mitochondrial Disease, exactly what the specific form of “Mito” and gene mutation are is as yet unknown. This has caused multiple organ failure and complications affecting most organs and body systems, necessitating intravenous nutrition (TPN) and medication, various interventions, devices and surgically created stomas, as well as being dependent on the use of an electric wheelchair, and requiring round the clock care. Lucy has exceeded her prognosis and has benefitted from palliative care for eight years. 

Lucy had health problems from birth and regularly saw medical professionals but managed to live a somewhat normal life until she became completely disabled and seriously ill at the age of 14. At 14 she needed a wheelchair for mobility and became housebound and soon after, completely bed bound, requiring round the clock care. Despite this, she was determined to do her GCSEs, 10 of them, at the same time as her former peers, which she achieved with 6 hours per week home tuition and hours of self-directed learning, gaining all 10 GCSEs at A* to C grade, consisting of an A* in Sociology, A in English, Biology and Physics, B in Maths and Chemistry, C in French and two distinctions and a pass in IT. Lucy started college part time in the sciences, but was forced to give this up 6 months later. 

Lucy’s condition is extremely complex and she depends on a lot of intervention to survive. Over the years, Lucy’s condition has progressed and become more fragile and increasingly difficult to manage, indeed many times Lucy has suffered various complications and battles with sepsis, being lucky to survive. Her condition is progressive and it will shorten her lifespan, in fact in 2012 she was told she wasn’t expected to live another 5 years. She’s still here, however, and determined to continue defying the odds. 

Lucy’s honours and awards include:

  • Member of the Most Excellent Order of the British Empire (MBE) for services to young people with disabilities in the 2016 New Years Honours
  • Honorary Degree of Master of the University (MUniv) from the Open University for commitment to public services (2018)
  • Shaw Trust Disability Power 100 List 2018 – recognising the 100 most influential disabled people in Britain
  • Became a Fellow of the Royal Society for the encouragement of Arts, Manufactures and Commerce (FRSA) in February 2019
  • Runner-up for the 2018 Queen’s Young Leaders
  • Health Service Journal Top 50 Patient Leader (2015)
  • Jack Petchey Award for Achievement (2010)
  • Diana Award for achievement and being a positive role model (2010)

Current Roles:

  • Ambassador/Young Avenger for Together for Short Lives
  • Global Youth Ambassador for the International Children’s Palliative Care Network
  • Trustee of the Pseudo Obstruction Research Trust
  • Ambassador for Dreams Come True
  • Member of the Open University Sexuality Alliance – & Founder & Chair of the Young Advisory Group “AdversiTeam”
  • People in Partnership Forum Member for Hospice UK
  • Trailblazer for Muscular Dystrophy UK
  • Patient & Young People’s Lead for the Digital Legacy Association
  • Member of the NHS England Children Complex Needs & SEND Board (CCN SEND)
  • Lead Co-Researcher for Living Life To The Fullest
  • Patient Reviewer for the British Medical Journal
  • Patient Partnership Panel Member for the British Medical Journal
  • Independent Consultant for the Worldwide Hospice Palliative Care Alliance
  • Co-Researcher for the Dignity Therapy Research Project (MAGICYL)
  • Founder of Palliative Care Voices
  • Member of the Transition Taskforce East of England Regional Action Group
  • Member of the Transition Taskforce North London Regional Action Group
  • Young Person’s Representative for the Ofsted & Care Quality Commission External Board for SEND Area Inspections
  • Member of the NHS Peer Leadership Academy (2018 intake)
  • Huffington Post blogger
  • Blogger at Lucy’s Light
  • Affiliate Member of iHuman (The Research Institute for the Study of the Human at the University of Sheffield)
  • Include Me TOO Ambassador
  • Founder of the Young Adult Complex Condition Alliance (YACCA)
  • #MedLearn Ambassador
  • ehospice contributor
  • Member of the NHS Peer Leadership Academy Autumn 2018
  • Member of the NHS England Personalised Care Strategic Coproduction Group
  • Young Ambassador – Dog Assistance in Disability (Dog A.I.D.)
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1109522554 Miss Lucy Watts, MBE. Picture date: Thursday 9 June 2016. Copyright: PA Photos NOT FOR PUBLICATION WITHOUT WRITTEN CONSENT OF PA PHOTOS : 020 7963 7305.
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UK children’s palliative care charity Together for Short Lives announces a report by the APPG on how to improve palliative care for young people.
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