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Lucy Watts MBE Investiture at Buckingham Palace

Lucy collecting her MBELucy Watts MBE went to her Investiture on Thursday 9th July at Buckingham Palace. Here she talks about this special day:

'In the New Years Honours 2016, I was appointed Member of the Most Excellent Order of the British Empire for my services to Young People with Disabilities. Then on Thursday 9th June 2016, I received my MBE in my Investiture at Buckingham Palace, presented to me by His Royal Highness The Prince of Wales. It is a huge honour to be appointed an MBE, especially so given my young age, I’m only 22, and the fact that my period of work hasn’t spanned decades like many others. However, it’s highly unlikely that my life, and my work, will span decades, which makes it even more special to receive the Honour whilst I am at the peak of my work, and am still well enough and able to attend my investiture, and able to enjoy being a Member of the Order. It is a huge honour to be recognised for my work. My charity, health and disability work gives me a positive focus away from the pain, suffering and struggles I have as a result of my conditions, and the restrictions the conditions and their complications impose upon my life. To have something to focus on, a purpose in life and an ability to use my experiences - good and bad - constructively to benefit others, is very important and a key component of my coping mechanism. Being able to distract myself with my work, and at the same time, advocate for, represent and support others with chronic and complex conditions and disabilities is a great way to use my energy in a productive and worthwhile manner - however limited my energy may be on some days.

My day was very special at Buckingham Palace, going behind the gates and into the forecourt was a magical feeling; it’s not every day you get to go into a Royal residence. Not only that, but to do so to receive an award was truly an amazing experience. Their wheelchair access, and support of those with disabilities, is second to none. I had someone there for me all day, and someone else pushed my grandmother in her wheelchair, so that mum didn’t have to do it. Once out of the car, we gathered in the lobby of the Palace, before going up a floor where my mum, Grandma and nurse were taken straight into the Ballroom, and I was taken into a very beautiful and decadent room where the other recipients were gathering. It was lovely talking to the very worthy recipients and hearing their stories; they were positively surprised and very impressed that I was receiving an Honour at such a young age. We were then taken to the room next to the Ballroom in groups of 15 to 20, the rest of us watched the ceremony on a TV whilst we waited, and then I was taken through in group three to go through to receive my award. We walked through a few different rooms, then through the back of the Ballroom and into a room next door, where we lined up in order, and went through into the Ballroom one by one to receive our award. When I went in to receive mine, Prince Charles stepped off his stage so that he could put my MBE on the hook that had been placed on my jacket earlier in the day, and talk to me on my level. He congratulated me on my work and asked a little bit about it. He said that I must make a big impact and help a lot of people, and to be very proud of myself, as well as telling me to keep up the good work. He then admired my wheelchair, so we talked about that very briefly, and he held out his hand, I shook it, reversed away, bowed my head and drove out of the room. There my MBE was taken off my hook on my jacket, it was put in a box and I went to the back of the Ballroom to join my family to watch the rest of the ceremony. I was so worried about what I would say to His Royal Highness, but I needn’t have worried as the brief conversation flowed effortlessly. He was genuine and very interested in my work and congratulated me more than once. He was so lovely with me, and those few minutes of receiving my award, talking to him and shaking his hand I will never, ever forget. Once the ceremony was over, the national anthem was played. It was extremely moving when the national anthem was played, though we couldn’t sing along. It was hearing that national anthem that made the magnitude of what has happened, and what it means, dawn on me.

It was an extremely special day, one myself, my mum and Grandma will never forget. A real day to remember and look back on fondly. It was an experience of a lifetime, and I know I will never forget that feeling of talking to, receiving my award from and shaking the hand of His Royal Highness, The Prince of Wales. Nor will my nurse Faggie ever forget this day; she is the envy of all of my team of ITU nurses because she was the one who came with us to Buckingham Palace! Just a truly magical day, and one which we shall cherish the memories of.

It is wonderful to be recognised for my work in such a big way, and that people think I’m worthy of such a prestigious accolade. Not just my family, but the person who nominated me - I still do not know who it was - as well as the Cabinet Office, who selected me for an MBE out of many thousands of applications, and the Queen who approved the list of nominees, and then for Prince Charles to present it and congratulate me on my work, appreciate what I have done and tell me to keep going. Nothing says you’ve done well and made a difference like being awarded an Honour, in my case an MBE. I hope that I will be able to continue with my work, make an even bigger difference, expand what I do and continue to make life better for others with illnesses and disabilities. I do hope it will allow me to do more, that it will be a springboard into other opportunities, and that my MBE will raise awareness of my conditions and of the difficulties the unwell and disabled face in their daily lives. I hope to use it to the benefit of others.'

Images courtesy of British Ceremonial Arts Ltd.

Care Quality Commission (CQC) and Together for Short Lives

Hameed Jimoh Junior, who assisted with the production of the 'Talking about sex, sexuality and relationships; Guidance and Standards(2015), was successful at recent interview to become an Expert by Experience for the CQC for inspection visits and has recently become an advisor of Together for Short Lives, Young adults group.

In addition, Junior will be addressing The National Council for Child Health & Wellbeing at the Royal College of Nursing on 11th May with Phillipa Sellar and Maddie Blackburn, representing The OU Sexuality Alliance and will also be addressing a Sexuality Masterclass with Together for Short Lives and The Open University in Birmingham on 19th May 2016.

Transitional Care Conference 

Thursday 8th September - Friday 9th September 2016

Hosted by St. Elizabeth Hospice and Together for Short Lives, this conference aims to advise delegates about how to become better equipped in progressing transitional care services for young adults with palliative care needs. 

The conference programme is available here.

For further information please email St Elizabeth Hospice. Sexuality Guidance Masterclasses.

Sexuality Guidance Masterclasses

MasterclassMasterclasses addressing sexuality, disability and the Law were jointly hosted by The Open University Sexuality Alliance with Together for Short Lives in May and June 2016. These were held in Birmingham and Edinburgh. Over 80 delegates from around the UK attended the two events. In addition, since January 2016, other seminars and workshops have been hosted by Rainbows, Helen & Douglas House, Chase and Ty Hafan Hospices to disseminate and cascade training on how to use 'Talking about sex, sexuality and relationships: Guidance and Standards' (2015). All of these events were well attended and evaluated. 

In July 2016, The Open University and Together for Short Lives published a second addition of 'Talking about sex, sexuality and relationships: Guidance and Standards'  which will be freely available on- line after 20th July and via hard copy from

Presentation of the Sexuality Guidance and Standards to the National Council for Child Health and Well-being:

Royal College of Nursing: 11th May 2016 

JuniorOn 11th May, Hameed Jimoh (Junior), Phillipa Sellar and Maddie Blackburn gave a presentation about 'Talking about sex, sexuality and relationships: Guidance and Standards' to 15 members of The National Council for Child Health and Well- being which was chaired by Dame Marion Roe, DBE. There was positive feedback about the guidance and significant interest in the forthcoming Sexuality Masterclasses which will be hosted by The Open University with Together for Short Lives. 

The Open University Sexuality Alliance representatives were also invited to contribute to discussion following presentations by Diabetes UK and Sebastian's Action Trust. Maddie Blackburn commented that sexuality is a major component of spiritual, physical and social identity which is often not addressed in Healthcare Plans in young adult settings in the NHS or Third Sector organisations. She added, as many young adults with life-limiting and life- threatening conditions are now living several decades into adulthood, aspects of sexuality should no longer be ignored and that these issues are also important for family supporters and care staff. Jimoh Hameed (Junior) and Phillipa Sellar also raised concerns about the high costs of Carers and Specialist Transport, which enable people like Junior to attend medical appointments as well as special events. The OU Sexuality Alliance has been invited to address The National Council again.

Presentation to Paedriatric staff at the Lady Cilento Children's Hospital, Brisbane, Queensland, Australia about the OU Sexuality Guidance and Standards on 1st March 2016

Lady Cilento HospitalMaddie Blackburn, Chair of the OU Sexuality Alliance met with Dr Anthony Herbert, Medical Director of the Palliative Care service, which includes a Multi Disciplinary Health and Social Care Team, at the Lady Cilento Children's Hospital, Brisbane, Queensland, Australia on 1st March 2016 Maddie was invited to attend and contribute to the weekly meeting in the children's and young people's oncology and palliative care unit, where care matters concerning children and young people with complex conditions and illnesses are addressed.

Afterwards, Maddie gave a presentation about 'Talking about sex, relationships and intimacy: Guidance and Standards for those working with children and young people with life-limiting and life Threatening conditions', after which followed fruitful debate and exchange about compatible and different approaches to addressing the sexuality of people with LLTCS. Dr Herbert is keen to progress similar work in Queensland and in future would like to link and engage with The OU Sexuality Alliance.

'People with learning disabilities want to find love too'

ChidoChido Ndadzungira, a third year PhD student in the School of Health, Wellbeing and Social Care at The Open University, has had her article 'People with learning disabilities want to find love too' published in The Conversation. Chido's PhD is qualitative research exploring women with mild to moderate learning disabilities' views and experiences of sexual relationships, and she has over 10 years of experience working with adults with learning disabilities in different settings.

Purposely published just before Valentine's Day, the article explores the barriers and challenges people with learning disabilities often face when looking for a relationship. The full article can be accessed here

'Transition from child to adult palliative care services' ICPCN tweetchat

ICPCN logoThe International Children's Palliative Care Network (ICPCN) will be hosting another Tweetchat on Tuesday 9th February 2016,with guest Tweeters Lucy Watts MBE and Lizzie Chambers! Both Lizzie Chambers and Lucy Watts MBE are members of The Open University Sexuality Alliance. Lucy wrote the Foreword and Lizzie was one of the authors of 'Talking about sex, sexuality and relationships: Guidance and Standards for those working with life-limiting or life-threatening conditions' (2015). 

Do try and tweet your thoughts about the Sexuality Guidance and Standards, as well as other important issues around transition into adult life for people with life limiting or life threatening conditions. The hashtag to join the chat is #CPCDialog

New Year’s Honours for Lucy Watts and Bev Barclay who helped contribute to 'Talking about sex, sexuality and relationships; Guidance and Standards'

Lucy Watts MBELucy Watts, who wrote the Foreword in the guidance document, was awarded an MBE for services to Young People with Disabilities. Lucy has worked tirelessly to be an advocate for other young people with health and disability conditions and to educate others about the needs of children and young people who require constant 24/7 care and the challenges they face. She uses social media to write and speak for charities and for those without a voice, wanting to make her life count and inspiring others to do the same. She posts regularly on her website Lucy’s Light - most recently to promote Dying Awareness Week in May 2015. Her main focus of activity has been children’s palliative care. She has extended this to influencing national policymakers and expert advisers to government and to The Open University Sexuality Alliance.

Beverley Barclay, the Director of Clinical Services at The J’s Hospice, was awarded an MBE in the New Year’s Honours List for her services to nursing, especially children and young adults with life-limiting / life-threatening conditions.

Bev has been recognised for the major impact she has had on the care and well-being of young adults with life limiting or life threatening conditions, at both local and national levels. In particular, she has influenced conventional thinking about those people in transition from children’s to adult’s healthcare services and the ways in which they should be cared for and has actively promoted the work of The Open University Sexuality Alliance.

Our congratulations go to both Lucy and Bev on their outstanding achievement!

The Open University IT Conference

On the 16th December 2015, Sarah Earle and Maddie Blackburn addressed The Open University IT conference about the work of The Open University Sexuality Alliance, in a recorded seminar. 

Launch of 'Talking about Sex, Sexuality and Relationships: 

Guidance and standards for those working with young people with life-limiting or life-threatening conditions'

Sexuality GuidanceOn December 1st, The Open University Sexuality Alliance launched the interim final 'Talking about Sex, Sexuality and Relationships: Guidance and standards for those working with young people with life-limiting or life-threatening conditions'' at The Open University in London. The guidance and standards were launched by Dame Elizabeth Fradd, DBE. Seventy-five delegates attended this event from around the UK. This included young people with life-limiting and life- threatening conditions, their families, staff and organisational leads from the NHS and other public sector organisations, as well as colleagues from the Royal College of Nursing and lawyers. The day was opened by Dr Sarah Earle (The Open University) who provided the background to the development of the guidance and standards, Dame Elizabeth Fradd DBE followed to officially launch the documents.

Dr Kirsty Liddiard (University of Sheffield) welcomed four young adults attending this event and acknowledged their vital contribution to the design, contents and checking of the guidance at all stages of its development. One of these young adults was Hameed Jimoh (Junior), who delivered an inspiring presentation about living in a care home and how this may influence sexuality. Mark Chapman (DMD Pathfinders) then joined us via Skype from Scotland and spoke about his feelings related to sexuality, intimacy and relationships from the perspective of a young man with Duchenne Muscular DystrophyMaddie Blackburn (The Open University) thanked a family whose son had recently died but had made an important contribution to the guidance. A lunch break provided an opportunity to network with colleagues and view the exhibition, as well as an opportunity to watch the OU Sexuality Alliance video.

The purpose of the afternoon session was to assist delegates in using and implementing the guidance. Maddie explained that she had received some helpful suggestions of further references and organisations, which would be added to the online and final printed version of the guidance. Delegates were reminded that the guidance has been designed to help health, social care and education practitioners talk about the issues most relevant to young people with life-limiting and life-threatening conditions in relation to sexuality, intimacy and relationships. The launch was also being used as a platform to explain and test the guidance with delegates from different organisations throughout the UK.

Alison Cooke (Rainbows, Children and Young People’s Hospice) Simon Hardcastle (Leicestershire Partnership NHS Trust) talked about Clinical Practice and Accountability, and Dr Claire de Than (City University London) addressed the clinical governance, accountability and legal issues within the guidance. Lizzie Chambers (Together for Short Lives) then briefly spoke about her role in this work, and how the Together for Short Lives Taskforce hope to take forward and implement the guidance. Lizzie then introduced Paul Casey (The Family Planning Association), Celine Barry (Action Duchenne) and Mark Chapman. They gave very informative, interactive presentations on Life-Long Learning and the importance of education, which is addressed throughout the guidance. Following questions and tea, Lizzie introduced Laura Klepping (Helen & Douglas House Hospice) who addressed citizenship and supporting people with capacity issues about sexuality.  

The launch concluded with a summary of contributions by Dame Elizabeth Fradd who thanked the audience and in particular, acknowledged the richness provided by the young adults and families who had actively engaged with and were very much at the heart of this event. 

Delegates were asked to complete an evaluation form on the day. High-level feedback can be found here

For more information about this work or to request a hard copy, please email

Contact us

If you would like to know more about the work of The Open University Sexuality Alliance or would like to get involved please contact:

Dr Sarah Earle
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
Walton Hall
Milton Keynes


Telephone: 01908 654260

Sexuality Alliance Young Adults Blog