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Ms Maddie Blackburn

Profile summary

  • Research Student
  • Research Student
  • Faculty of Wellbeing, Education & Language Studies
  • Faculty Office
  • Research Excellence
  • maddie.blackburn

Professional biography

I retired from full time employment in 2012. I originally trained as a nurse, midwife and as a health visitor in the 1970s. I am a qualified lawyer, senior health professional with extensive background in policy development, research, management, law and performance auditing. Over the years, I have developed considerable experience in national and international children’s policy and legislation across different health, social care, criminal justice, legal, regulatory and charity organisations. I have also held several clinical and senior management roles in both adult and children’s services (as a CEO and Director). I regularly speak at conferences and contribute to national debates on disability and safety.

In the 1990s, I was awarded a Fellowship from former ASBAH, now SHINE,, to undertake a study of the Sexual Knowledge and Experiences of young people with Spina Bifida and or Hydrocephlaus. This led to the publication of my first book" Sexuality and Disability" (2002), Butterworth- Heinemann, now Elsevier Science.

I was formerly a Solicitor in London and Children's Policy Officer at The Law Society, England and Wales. I was Head of Children's Young People's Strategy at the former Health Care Commission, now the CQC, a CEO of former Iain Rennie Hospice at Home, now Rennie Grove Hospice Care, and Director of Care Development with Together for Short Lives until I retired in 2012. I later began my PhD at The Open University and in 2013, and with Dr Sarah Earle, set up The OU Sexuality Alliance which I currently Chair..


PhD candidate, The Open University and Chiar of The OU Sexuality Alliance

Regional Fellow of the Royal Society of Medicine


Research interests

  • The palliative care needs of children, young people and adults
  • Sexuality and Disability:
  • Children and young people with complex needs and disabilities
  • Safeguarding children and young people
  • Youth  Offending
  • Mothers with babies in prison settings
  • Law, Regulation  and Ethics.

Teaching interests

Research Ethics

Palliative care

Impact and engagement

In December 2015, The Open University Sexuality Aliance published and launched Talking about sex, sexuality and relationships; Guidance and Standards for those workng with young people with life--limiting or life- threatening conditions ( 2015) see

We recognise  its potential to significantly impact practice in the field of care for young adults with life-limiting conditions. Its realistic ambition is to become a definitive resource for practitioners and service users and is endorsed by the  contributions of the stakeholders already committed to the OU  Sexuality Alliance.  This Faculty has a strong tradition of working collaboratively with a wide range of publics including, service users, employers, third-sector organisations, commissioners and policy makers. Participative and inclusive methodologies are a key strength within HSC which aim to help enhance our relationships with a wide range of organisations in the sector.

Please see below for the following policy and media reporting since  its publication:

Media links: 



External collaborations

Via the Open University Sexualty Alliance, work with service users,  National charities, such as Together for Short Lives, The Family Planning Association, Law Works, Action Duchenne, DMD Pathfinders, various children's and young people's hospices throughout the UK,  regulators, rofessional organisations, NHS organisations and other public, third sector, private and academic institutions.

The International children's palliative care network (ICPCN).


Undertaking Doctoral Research with Children and Young People with Life‐limiting or Life‐threatening Conditions (2019-05-29)
Harris, Nicky; Blackburn, Maddie; Noyes, Jane; Aldridge, Jan; Lapwood, Suzie; Dunbar, Helen; Price, Jane; Mitchell, Sarah; Chambers, Lizzie and Bluebond‐Langner, Myra
Journal of Advanced Nursing
Editorial - Talking about sex, relationships and intimacy: new guidance and standards for nurses and other health and social care professionals working with young people with life-limiting and life-threatening conditions (2017-10)
Blackburn, Maddie; Chambers, Lizzie and Earle, Sarah
Journal of Advanced Nursing, 73(10) (pp. 2265-2267)
Relationships and sexuality in young adults with life-limiting conditions in England (2015-04)
Blackburn, M.; Earle, S. and Komaromy, C.
In : Royal College of Paediatrics and Child Health Annual Conference 2015 (28-30 Apr 2015, Birmingham)
Sexuality, relationships and reproductive choices of young adults 16+ with life-limiting conditions in the UK: Choice or taboo? (2014-11)
Blackburn, M. C.; Earle, S. and Komaromy, C.
In : 2nd Congress on Paediatric Palliative Care - A global gathering (19-21 Nov 2014, Rome)
Relationships and sexuality in young adults with life-limiting conditions in England (2014-03)
Blackburn, Maddie; Earle, Sarah and Komaromy, Carol
In : 10th Palliative Care Congress (12-14 Mar 2014, Harrogate)
The sexuality of life-limited young(er) people in the UK (2014-02-10)
Blackburn, Maddie; Earle, Sarah and Komaromy, Carol
In : The 1st ICPCN Conference Mumbai, 2014 (10-12 Feb 2014, Mumbai, India)