‘Suicide rates among people with autism in England have reached “worryingly” high levels’

Suicide rates among people with autism in England have reached “worryingly” high levels, according to an article in Lancet Psychiatry.

Writing ahead of a world-first international summit on suicidality in autism, the researchers – from Newcastle and Coventry universities – say the issue remains poorly understood and that action is urgently needed to help those most at risk.

Co-author Dr Jacqui Rodgers, from Newcastle University’s Institute of Neuroscience, said: “This unique event is of huge importance. For the first time researchers and clinicians from the fields of autism and suicide research will come together, along with members of the autism community and those bereaved by suicide, to learn from each other and identify clinical and research priorities to address this urgent issue.

Jon Spiers, chief executive of autism research charity Autistica, said: “For years society and the healthcare system have ignored the voices of families who have lost autistic loved ones unnecessarily, and far too young.

“Recent research revealing the sheer scale of the problem proves that we cannot let that continue.

“National and local government, research funders and industry, as well as the NHS and service providers all have a responsibility to tackle the issue of suicide in autism. Autistica is committed to playing a major part by funding mental health research programmes. This suicide summit will kick-start our campaign for change in this severely overlooked area.”

Coventry and Newcastle universities are running the international summit on suicide in autism – the first of its kind anywhere in the world – over the next two days, with funding from Autistica and the James Lind Alliance.

The aim is to develop recommendations for changes in government policy and practise that can be implemented quickly to reduce suicide in autism, and to decide on priorities for future research in the field.


My Healthcare Passport Participatory Action Research project overview

My Healthcare Passport Participatory Action Research project overview

East Kent Hospitals acknowledged the significant health inequalities that adults with learning disabilities experience in hospital; a Healthcare Passport was identified as a person centred and patient owned tool that contained pertinent personalised information enabling health care professionals to make adjustments for someone less able to communicate their needs and wishes. Led by East Kent Hospitals, a multi stakeholder group co-created a tool over a twelve month period and was awarded charitable funds to have the tool professionally designed and launched.

While stakeholders celebrated the launch of the tool at public event in 2012, new questions emerged as to the use of the passport and the improvements that adults with learning disabilities and their supporters could expect as a result of using it.

The aim of this participatory action research project was collaboratively identify, implement, evaluate and refine strategies enabling the passport to be used effectively in a person-centred way with people with learning disabilities,  to achieve this aim, the following objectives were identified; to:

  • Identify practical implications and strategies for effective implementation of My Healthcare Passport.
  • To develop approaches, methods and indicators to evaluate My Healthcare Passport.
  • To contribute inclusive research evidence base by learning disability nursing.

The Co-researcher team- made up of Nurses, people with learning disabilities, parent carers, and a care home manager – met 10 times over a twelve month period. Several key elements of data were collected:-

  • Co-researcher meetings

Underpinned by the critical creativity paradigm, practice development methodology and methods such as active learning, fourth generation evaluation and PATH were employed create the spirals of action research activity in a mixed ability co-researcher team.

  • Stakeholder consultation

The co-researcher team identified communities across the whole east Kent system to consult with either in person or   via a web based survey. This sought to understand who had used the tool, the perceived benefits and improvements that could be made. The co-researcher team collectively analysed this data identifying themes, recommending and taking further action.

  • Two key spirals of activity were identified:-
  1. Co-researchers developing an understanding of the role of the researcher
  2. Working together to identify further spirals of activity.
  • Status –

Non NHS staff experienced significant challenges relating to status and administration to be able to contribute. An example of this was the co-researchers with learning disabilities not having sufficient identification to achieve a clear Disclosure and Barring (DBS) check preventing them taking up full status as a Co-researcher.

  • Consultation results & themes –

The Co-researcher team consulted with approximately 420 stakeholders; through collective analysis three themes emerged:-

  • To make improvements to the passport
  • To sustain awareness of the passport,
  • To use IT systems to store the passport.

As a result,

  • My Healthcare Passport was redesigned and editable Passport was published online
  • A Hospital audit tool was created and tested.
  • A partnership project with tap2tag was planned to store and access My Healthcare Passport.
  • A film about the project has been published online
  • A life story workshop has provided evidence for a new project led by East Kent Mencap.
  • The co-researcher team chose purchase the co-researchers with learning disabilities sufficient identification enabling them to play a more active role as citizens.

Implications for practice

  • Involving non NHS staff as partners in NHS research requires creative, reflexive, facilitative leadership.
  • Initiatives to employ more people with learning disabilities will want to plan for issues associated with DBS checking.
  • Person centred, patient owned health records such as My Healthcare Passport require ongoing collective action to sustain awareness.
  • IT systems can make My Healthcare Passport accessible to those that require the information, while safeguarding it from falling into the wrong hands.
  • Uses of Passports are an emerging indicator for regulators and national initiatives.

For further information check www.ekhuft.nhs.uk/passport and www.fons.org/library/report-details/71699

STOMP running two workshops at the KSS 15 June Conference






STOMP – Stopping Over-Medication of People with a learning disability, autism, or both – now confirmed as speaker and running two workshops at the 15 June Conference: one for medical professionals and one for support providers. #KSSCOP2017

Download the booking form for the 15 June Conference, 9am to 4pm at The Charis Centre, Crawley, here: http://bit.ly/2r4m52x it’s a ‘fillable’ form – fill it in on the screen, save it and return it attached to an email to learning@bild.org.uk

Sally Warren of the Gr8 Support Movement confirmed as co-chair for KSSLDCOP June conference

Sally Warren of Paradigm and the Gr8 Support Movement has been confirmed as co-chair for KSSLDCOP’s June conference. More about Sally here: www.paradigm-uk.org/sally-warren/

The Gr8 Support Movement network, facilitated by Sally Warren, Lucy Hurst-Brown and Jackie Downer, will connect support workers across the country to share ideas, challenges and action, with a powerful message that support workers themselves can create new solutions. Find out more about the Gr8 Support Movement, here: http://bit.ly/2q6226g

Download the booking form for the 15 June Conference, 9am to 4pm at The Charis Centre, Crawley, here: http://bit.ly/2r4m52x it’s a ‘fillable’ form – fill it in on the screen, save it and return it attached to an email to learning@bild.org.uk