Tizard Centre Seminar Series: Dr Stuart Todd “And then they were dead! How? The last months of life of people with learning disabilities”

Tuesday 19 September 2017 – Dr Stuart Todd “And then they were dead! How? The last months of life of people with learning disabilities”


A research based understanding of what it means to have a learning disability is becoming more complete as death and dying have been incorporated into the research agenda.  Borrowing on the central notion of ‘transitioning’, this seminar will focus on the fateful transition in the levels of people with learning disabilities.  It will offer a historical context based on a study of death and dying in a Victorian asylum through which to appreciate the challenges of death and dying for modern learning disability service providers.  Data will then be presented from two recent UK based studies that focused on looking at the ways specialist and generic care services have responded to people with LD in the last months of their lives.  Key issues here are the distinct mortality profiles of people with LD and Downs Syndrome; low levels of expected deaths within this population; the end of life care outcomes for people with LD; the fragility of community based dying and the nature of later life care transitions.  the seminar will also briefly sketch out themes for future collaborative research.

Dr Stuart Todd is a Senior Lecturer in Learning Disability Nursing at the University of South Wales. His research interests have focused on three key themes:  the self-identities of people with learning disabilities, the lives and experiences of parents of people with learning disabilities over the life course; and the social and historical relationship between disability and death. 

 Please contact Jo Ruffels to confirm a FREE place

  e: J.Ruffels@kent.ac.uk | Tel: +44 (0) 1227 827955 |

Palliative Care for People with a Learning Disability

This briefing by Jim Kennedy highlights the practice messages and resources available in NHS England’s recently published and very useful guide on providing end of life care to people with a learning disability. Although prepared by an English organisation its messages and resources are of UK-wide interest.

This is an important care concern which merits greater focus, and NHS England’s guide offers straightforward and accessible pointers of relevance to both commissioners and practitioners.

The guide is built around a framework of six ambitions (or principles) that lead to a series of top tips, followed by brief suggestions as to how these can be put into practice, and links to relevant resources.

Read the briefing here.

Research findings on social care support experienced by LGBT+ disabled people

We know almost nothing about the use and experiences of using social care support by LGBT+ disabled people. We might assume that there may be some tricky negotiations with the whole range of social care staff and providers when getting needs met that relate to sexual identity. Apart from initial decisions to ‘come out’, users may well need support to access LGBT+ venues, take part in social activities with other LGBT+ people, facilitate other ‘ordinary’ daily aspects of being LGBT+, require physical support with sex (alone or with others). LGBT+ people with learning disabilities may need particular support to assert and/or explain their needs as they pertain to sexual identity.

Our study included a survey of LGBT+ disabled adults who use social care in England; qualitative interviews with 30 LGBT+ disabled people paying attention to recruiting participants from across the LGBT+ spectrum as well as along lines of age, gender, ethnicity; and, also included a focus group of personal assistants (PAs) to explore issues from their perspective.

The launch event

The launch event will showcase the research findings and outputs – aside from the academic outputs we have produced some short films and web resources, and will disseminate these widely across our extensive networks.

Register for the FREE event here.

Moving between hospital and home, including care homes A quick guide for registered managers of care homes and home care

Nice and SCIE have produced a quick guide on Moving between hospital and home.

Registered managers and their teams play an important role in supporting people when they are transferring in and out of hospital. This quick guide provides a brief overview of how managers can work with hospitals to ensure a good experience of transition for the people in their care.

You can find out more and access the guidance here.

“Imagining Otherwise”: Challenging Dominant Views Regarding Autism and How to Help Autistic People

In recent years we have seen a massive growth of academic research in the field of autism. Much of this has set out to examine genetic causes or cognitive and behavioural characteristics, and has been largely carried out in the United States. This attention has also led to a growth in the number of media representations of autism and autistic people, often based on rather stereotypical characterisations, and consultations with researchers and clinicians.

Read the Care Knowledge blog by Damian Milton here.

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