rare disease – Lucy Watts MBE / Lucy Watts Ltd

A Home For Lucy – help us raise £130,000 to keep Lucy living at home

May 13, 2021
Lucy Watts MBE
award, awareness, BLOG, Blog, care, complex needs, deterioration, disability, disability rights, family, fundraising, future, health, hospice, illness, life limiting, life threatening, mother, mum, neuromuscular disorder, NHS, nurses, nursing, palliative, palliative care, quality of life, rare disease, rights, wheelchair
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Can you help us raise £130,000 to build #AHomeForLucy, a fully equipped and custom built extension to the property that fully meets my health, clinical/medical, care, practical and access needs, and enables me to remain living in my home? An…

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Young Innovator Award Winner 2020/21

January 12, 2021
Lucy Watts MBE
award, awareness, Blog, Business, care, care package, care planning, Carers, children, chronic illness, collaborative care, communication, complex needs, continuing health, coproduction, COVID, death, deterioration, diagnosis, digital, Digital Leaders 100, digital legacy, disability, disability rights, disabled, doctor, education, empowerment, end of life, family, future, health, healthcare, hospice, hospital, human rights, illness, information sharing, Inspiration, internet, life expectancy, life limiting, life threatening, listen, Lived Experience Learning, News, NHS, nurses, nursing, pain, palliative, palliative care, patient activation, patient experience, patient group, Patient Leader, patient network, peer leader, personal health budget, personalised care, personalised care and support plan, PHB, primary care, Public Involvement, quality of life, rare disease, representative, research, rights, sepsis, social media, social network, social services, spokesperson, surgery, TPN, transition, tube feeding, unpaid carers, user group, video, wheelchair, young carers, young people
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I am excited to announce I am part of the 2020/21 cohort of the Innovate UK Young Innovators Awards. What a real privilege this is to be considered worthy among such amazing innovators. I am part of the cohort due…

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Making The Digital Leaders 100 List – Will You Vote For Me?

June 20, 2020
Lucy Watts MBE
advocate, award, awareness, Blog, BLOG, care, charity, chronic illness, collaborative care, communication, complex needs, continuing health, coproduction, death, digital, Digital Leaders 100, digital legacy, disability, disability rights, empowerment, end of life, family, healthcare, hospice, illness, information sharing, internet, legacy, life limiting, life threatening, listen, lucy's light, NHS, NHS England, nursing, pain, palliative, palliative care, patient activation, patient experience, patient group, Patient Leader, patient network, peer leader, personal health budget, personalised care, PHB, politics, Public Involvement, rare disease, research, rights, social media, social network, speech, spokesperson, TEDx
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I am delighted to announce I have made the Digital Leaders 100 List in the Digital Leader of the Year category. The Digital Leaders list recognises leaders who are working hard to advance and secure digital transformation and are using…

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These are our realities, and we are the casualties – COVID-19

March 26, 2020
Lucy Watts MBE
advance care plan, Advance Decision, advocate, assistance dog, awareness, BLOG, Blog, care, care package, care planning, Carers, central line, communication, community nurse, complex needs, cope, coping, COVID, death, deterioration, disability, doctor, end of life, family, grief, health, healthcare, hope, hospice, hospital, illness, intestinal failure, Lasting Power of Attorney, life expectancy, life limiting, life threatening, mitochondrial, Molly, mother, neuromuscular disorder, NHS, nurse, nurses, nursing, pain, palliative, palliative care, patient experience, personal health budget, personalised care, primary care, quality of life, rare disease, TPN, unpaid carers
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This blog is part writing therapy, part rant, part activism, part distress, part processing, part making peace. It flicks seamlessly between all of the above, so you never know quite what ‘part’ you’re in when you read it, heck sometimes…

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International Wheelchair Day – 1st March 2020

March 1, 2020
Lucy Watts MBE
access, advance care plan, artificial nutrition, assistance dog, awareness, Blog, BLOG, Buckingham Palace, care, care package, central line, chronic illness, complex needs, coping, deterioration, diagnosis, disability, Disability Power 100, disability rights, disabled, discrimination, dog, empowerment, equality act, family, festival, fundraising, GCSE, health, healthcare, honorary degree, honorary masters, hospice, hospital, illness, Inspiration, intestinal failure, life limiting, life threatening, MBE, Molly, neuromuscular disorder, NHS, NHS England, nursing, Open University, pain, palliative, palliative care, parliament, patient experience, Patient Leader, peer leader, personal health budget, personalised care, politics, Power List, quality of life, rare disease, rights, social services, speech, TPN, tube feeding, tubes, wheelchair, WOMAD, young people
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Today it’s International Wheelchair Day and it celebrates the life-enhancing and life-changing benefits of having the right wheelchair, and celebrating the individuals who rely upon this piece of equipment to mobilise and live their lives to the fullest. I’ve…

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My TEDxNHS Talk is live! “One Sentence That Transformed My Life”

January 22, 2020
Lucy Watts MBE
advance care plan, Advance Decision, advocate, artificial nutrition, assistance dog, awareness, care, care package, care planning, Carers, collaborative care, communication, complex needs, cope, coping, deterioration, diagnosis, digital legacy, disability, disabled, DNACPR, empowerment, end of life, future, grief, health, healthcare, hope, hospice, hospital, illness, Inspiration, intestinal failure, Lasting Power of Attorney, legacy, life after death, life expectancy, life limiting, life threatening, listen, lucy's light, mitochondrial, Molly, NHS, NHS Assembly, NHS England, NHS Long Term Plan, nurse, nurses, nursing, pain, palliative, palliative care, patient activation, patient experience, personalised care, personalised care and support plan, quality of life, rare disease, sepsis, spokesperson, TEDx, TEDxNHS, TPN, video, World Health Organisation, young people
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2019 Review Blog – What A Year!

December 28, 2019
Lucy Watts MBE
advance care plan, advocate, artificial nutrition, assistance dog, awareness, BBC, benefits, BLOG, Blog, budget, care, care package, care planning, Carers, collaborative care, commissioning, communication, complex needs, continuing health, cope, coping, coproduction, death, deterioration, diagnosis, digital, digital legacy, disability, Disability Power 100, disability rights, disabled, DNACPR, doctor, documentary, dog, empowerment, end of life, family, festival, festival spirit, future, grateful, grief, health, healthcare, honorary degree, honorary masters, hope, hospice, Hospice UK, hospital, human rights, illness, information sharing, Inspiration, interview, intestinal failure, Lasting Power of Attorney, laugh, legacy, life expectancy, life limiting, life threatening, lucy's light, MBE, Molly, mother, mum, NHS, NHS Assembly, NHS England, NHS Long Term Plan, nurse, nurses, nursing, Open University, pain, palliative, palliative care, patient activation, patient experience, patient group, Patient Leader, patient network, peer leader, Peer Leadership Academy, personal health budget, personalised care, personalised care and support plan, PHB, podcast, politics, PORT, Power List, pseudo obstruction, Public Involvement, quality of life, rare disease, research, rights, sepsis, sexuality, Shaw Trust, sister, social media, social network, social services, speech, spokesperson, st christopher's, TEDx, TEDxNHS, TPN, transition, unpaid carers, user group, video, vlog, WHPCA, WOMAD, year review, young people
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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…

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Dying Matters Week 2019 – Are We Ready? Our Short Films

May 18, 2019
Lucy Watts MBE
advance care plan, Advance Decision, advocate, artificial nutrition, awareness, awareness week, bereavement, BLOG, care, care planning, Carers, communication, complex needs, continuing health, cope, coping, death, deterioration, diagnosis, digital legacy, disability, DNACPR, Dr Kathryn Mannix, Dying Matters, end of life, family, future, grateful, grief, health, healthcare, hope, hospice, Hospice UK, hospital, illness, life expectancy, life limiting, life threatening, loss, love, mother, mum, nurse, nurses, nursing, pain, palliative, palliative care, patient activation, patient experience, personal health budget, personalised care, quality of life, rare disease, sepsis, TPN, unpaid carers, young people
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This week it has been Dying Matters Week 2019; 13th-19th May. The theme this year was “Are We Ready?” and what a great theme it is, as we really aren’t ready and we need to be. Dying Matters Awareness Week…

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Sitting on the NHS Assembly & Supporting Implementation of the NHS Long Term Plan

April 25, 2019
Lucy Watts MBE
assistance dog, BLOG, Blog, care, care package, care planning, collaborative care, commissioning, communication, complex needs, coproduction, diagnosis, digital, disability, doctor, empowerment, end of life, future, GP, health, healthcare, hospice, Hospice UK, hospital, ICPCN, illness, information sharing, interview, lancet, life limiting, life threatening, lucy's light, NHS, NHS Assembly, NHS Long Term Plan, NICE, nurse, nurses, nursing, pain, palliative, palliative care, parliament, patient activation, patient experience, patient group, Patient Leader, patient network, personal health budget, personalised care, personalised care and support plan, PHB, politics, primary care, Public Involvement, quality of life, rare disease, representative, rights, sepsis, social services, surgery, transition, unpaid carers, user group, WHO, WHPCA, World Health Organisation, young people
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With everything going on in the country currently, you’d be hard pressed to be able to ignore the negative press around the NHS, its future, the care it’s providing, patient satisfaction, and how other countries (without naming them) are trying…

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Rare Disease Day 2019 – What Rare Means For Me

February 28, 2019
Lucy Watts MBE
artificial nutrition, awareness, BLOG, Blog, central line, chronic illness, CIPO, complex needs, deterioration, diagnosis, disability, end of life, health, healthcare, hospice, illness, intestinal failure, life expectancy, life limiting, life threatening, mitochondrial, neuromuscular disorder, NHS, nursing, palliative, palliative care, pseudo obstruction, quality of life, rare disease, rare disease day, sepsis, stoma, TPN, wheelchair, zebra
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Today is Rare Disease Day 2019, celebrating people living with, and raising awareness of rare diseases. There are between 6000 and 8000 rare diseases, with new ones being discovered on a regular basis and equally more and more already known…

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