Our Letter to Nicola Sturgeon
Nicola Sturgeon MSP
The Scottish Parliament Edinburgh EH99 1SP
24th January 2019
Dear First Minister,
Re: The experiences of people with learning disability and autism detained in hospital in Scotland
I write to you on behalf of Rightful Lives, a group that has been working to raise the profile of the human rights of people with learning disabilities and autism and the abuse of those rights. Of particular concern is the inappropriate detention of people with learning disabilities and autism in inpatient, psychiatric care.
You will most likely be aware of the recent media coverage of Kyle Gibbon, a gentleman with learning disabilities who has been in inpatient, psychiatric care for over 13 years. As outlined in Ian Birrell’s coverage on 20 January, Kyle’s mother expected that he would be admitted for a few weeks, to help identify the right support for him after a difficult period for their family.
Over a decade later, Kyle remains detained and has suffered serious harm whilst deprived of his liberty. Alleged abuse includes repeated and excessive use of physical force by ward staff, bullying from other inpatients in the high security hospital, Carstairs, and the use of medication to subdue and control Kyle’s behaviour.
There are many details that concern us in relation to Kyle’s experience. His story includes common themes that have increasingly been exposed in relation to the detention of people with learning disabilities and autism. We urge the Scottish government to give due attention Kyle’s case, alongside broader consideration of the detention of people with learning disability and autism and regard for their human rights. Historically, people with learning disability and/or autism who display so-called challenging behaviour or behaviour that challenges have been subject to mental health legislation. This has meant people with learning disability and/or autism can be detained under mental health legislation, even when they do not have any mental disorder additional to their disability.
Campaigners have long recognised this as problematic and the issue was extensively considered in the Scottish government’s scoping exercise, published in 2017. Legislation relating to mental health detention is based on the principle that people should be detained for assessment and/or treatment, but the concept of ‘treatment’ for a learning disability or autism is anachronistic.
So-called challenging behaviour is a form of communication – it is a way in which a person can respond to their environment when they find it hard to otherwise communicate and often arises during periods of distress. In this sense, a person’s challenging behaviour must be met with effective support that helps them to communicate in a way that works for them. Such a response is not treatment, it is good person-centred support.
None the less, people with learning disability and/or autism have been detained in psychiatric care, under medicalised approaches to care and treatment. Many remain in inpatient care for extensive periods of time (the average length of stay for inpatients in England is 5 ½ years), long after any reasonable time needed to assess their needs.
I write to highlight this issue and ask what steps the Scottish government are taking to uphold the rights of people with learning disability and autism, particularly those most at risk of detention. In particular, what steps are the government taking to:
- Monitor the number of people with a learning disability or autism detained in inpatient care,
- Understand the experience of people with a learning disability or autism subject to such care,
- Ensure appropriate support is available in the community, so as to prevent admission to hospital and uphold people’s right to independent living, and
- Regulate the conditions in inpatient settings to ensure instances of abuse, maltreatment and inappropriate care are identified and responded to.
I also invite you to explore the Rightful Lives online exhibition via http://rightfullives.net/. The exhibition examines the rights of people with learning disabilities and features submissions from people across the UK, some of whom have lived in inpatient units. I hope the exhibition is of interest and provides new insight into the experience of people with learning disability and autism, and their loved ones.
On behalf of Rightful Lives