Stronger Together 01 – June 2016

Last modified: March 12, 2019
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Background

How do children with Autism and/or Learning Disabilities described by their families

using words like “loving, kind, caring, funny, gentle giant, sense of humour, makes me

laugh” end up in crisis and within the setting of an Assessment and Treatment Unit?

What goes wrong and how do our children, young people and families end up going

through these traumatic, confusing, debilitating, disempowering and, occasionally, fatal

experiences?

We know there are strong feelings of resistance amongst the disabled community and

families who have loved ones with experience of Assessment and Treatment Units. We

know that professionals, services, social care and health are working together through the

Transforming Care Agenda to decrease the number of beds used and to enable people to

live within their communities.

However, the change is too slow for individuals and we hear far too many horror stories of

the abuse, dehumanisation and maltreatment. We believe passionately that this cannot go

on. Families are saying that there is an urgent need to stop medicalising learning

disability and autism and stop sectioning people under the Mental Health Act who have

these conditions but are not mentally unwell. Parents, families and their supporters are

becoming increasingly vocal across social media in relation to this issue and are coming

together as a community in order to challenge this.

It is time that our communities had strong person centred values and a shared

understanding that young people with Autism and/or Learning Disabilities have the same

rights to lead a fulfilling and meaningful life as everyone else. This is a matter of human

rights.

Stronger Together is a working group of parents and professionals working in partnership

with Bringing Us Together and Respond. We received funding in February 2016 from the

NHS England Engagement Team to organise and run an event for parents who have loved

ones in, or who have been in Assessment and Treatment Units. Using our national

networks and knowledge we contacted a group of skilled, compassionate and experienced

parents of disabled children/young people to facilitate the weekend. It was critical that

this event was led by parents and the agenda set by the families.

We sent a flyer to our family networks advertising the event in February 2016 through

social media, email and NHS England’s Contact bulletin. We had an overwhelming

response from people interested in attending. Parents applied on line and we contacted

each person prior to the event via phone calls, emails and Facebook to ensure we got to

know everyone. This was important in holding an event that was going to be an emotional

roller coaster and where people would be encouraged to share their hard hitting stories

and experiences. During direct contact with parents we were able to clarify how the event

would run so we were clear on meeting needs and expectations over the weekend. This

was a weekend to support families to network and to develop strategies to help them to

stay strong rather than resolving individual issues during the event.

The event on June 5th and 6th 2016 brought together 29 parents from across the country,

12 parent facilitators, a local NHS psychologist and the Chief Executive from Respond. 12

parent facilitators were critical to ensure people remained safe and well supported whilst

sharing their emotional stories. We used the event to listen to each person’s story and

provided guidelines to ensure that everyone had the opportunity to share their

experiences. We were able to include themes determined by the families’ agenda and

NHS England Engagement Team that had been set prior to the weekend.

During the weekend there were tears, laughter, emotional support, bonding, networks

and sharing of information. Some parents had never met another parent with similar

experiences, many had come feeling isolated, angry at the system, and some were not in

a good place emotionally.

Themes:

The main themes gathered throughout the event included;

• The crisis happening in the first place,

• parents not listened to,

• lack of autism understanding,

• imbalance of power,

• sectioning,

• police involvement,

• Accident and Emergency services,

• the Mental Health Act,

• medication,

• complaints,

• Clinical Leads,

• Care and Treatment Reviews, and Discharge

• Parents being blamed rather than seen as a resource.


The full report can be downloaded below

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