Alison Cooke, former Director of Care Services at Rainbows Hospice for Children and Young People will be helping The Open University SexuaIity Alliance to scope the second stage of its work. She will be joining The Open University between February and the end of May 2017. Alison will be running some focus groups with young people, seeking their views about producing resources on the emotional well- being related to the sexuality of young people with Life-limiting and /or Life-threatening conditions.
11th & 12th November 2016, The Hilton London Metropole, 225 Edgware Road, London, W2 IJU
Action Duchenne’s 14th International Conference is the preeminent Duchenne & Becker muscular dystrophy event in the UK.
Please see the released Final Conference Agenda.
Families and supporters are able to meet and learn about all aspects of the condition from international experts, as well as to find out from other families and those living with Duchenne muscular dystrophy, how to get the best life possible. For academics and clinicians, this conference provides the opportunity to discuss the latest findings in genetic research and to share expertise in optimal standards of care.
We anticipate attracting at least 450 delegates from over 25 countries to London, made up of families, clinicians, therapists, researchers, pharmacological companies and, most importantly, those living with Duchenne and Becker muscular dystrophy.
There will be a Gala Dinner held at the Hotel on Friday evening. This is an optional extra (children go free).
In October, Maddie Blackburn, Chair of The Open University Sexuality Alliance, met with the Director of Care Services and Education Leads at Otago Community Hospice in Dunedin, on the South Island of New Zealand to discuss The Open University Sexuality Alliance’s ‘Talking about Sex, Sexuality and Relationships: Guidance and Standards for those working with young people with life-limiting or life-threatening conditions'. The staff really made Maddie most welcome, or as they say in Māori, Haere mai.
Otago Community Hospice is a key provider of both adults’ and children’s specialist palliative care on the South Island of New Zealand. Education and training is also provided by the Hospice in a supportive environment that meets the needs of health practitioners working across a range of sectors and services that provide palliative, end-of life and bereavement care in Otago. Workshops are mostly delivered by members of the Hospice interdisciplinary-team and sometimes include discussions around sexuality at the end-of -life. In addition, Otago Community Hospice provides education for medical students from the Dunedin School of Medicine as well as on-site placements for students from the Dunedin School of Medicine and Otago Polytechnic.
Palliative Care philosophy has a strong affinity with Te Whare Tapa Wha – the Māori health model put forward by Mason Durie in 1982. Both recognise the value of considering the physical/tinana, the psychological/hinengaro, the spiritual/wairua and the family/whānau aspects of a person’s wellbeing. The principles of Te Whare Tapa Wha serve as a framework for clinical practice and education in palliative care at the Otago Community Hospice. For more information see www.otagohospice.co.nz
We are excited to announne that our blog is now live! Lucy Watts and Junior Hameed Jimoh (Junior), who are members of The Open University Sexuality Alliance and advised on the design and contents of 'Talking about Sex, Sexuality and Relationships: Guidance and Standards for those working with young people with life-limiting or life-threatening conditions'' launch the first of a monthly Blog where they talk openly about the sexuality of young people with life-limiting and or Life threatening conditions.
'Talking about Sex, Sexuality and Relationships: Guidance and Standards for those working with young people with life-limiting or life-threatening conditions' was first launched in London on December 1st 2015 in print and online.
There is also a separate, two page extract (pdf) outlining the Principles, Guidance and Standards. Although no major changes have been made to the guidance, some additional legal references and information have been added to a second edition which is now available both online (pdf) and in print.
To request a print copy, please email firstname.lastname@example.org
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
Telephone: 01908 654260