Autism Focus – Understanding the Autistic Inpatient Experience Conference – A month on. 

“It’s been a month since we delivered the Autism Focus Conference, what a day it was! It was great to see so many other advocacy providers in attendance who were able to learn about the project but also share their own experiences of working within inpatient settings. There were best practice discussions across the sector, but also collaboration with health colleagues and plenty of take aways for improvements of individual services. I always value being able to spend time with colleagues across a range of health and social care services to develop relationships and improve partnership working in the best interests of the people we support. We hope in the future we can deliver another Autism Focus Conference to shine a light on the ‘real’ patient experience and continue to push for better support for people with autism.” 
Leanne Hignett, Services Director at Advocacy Focus

Here’s a roundup of the event 

March 10th, 2023 marked a significant day in the Advocacy Focus’ calendar. Ellie, our Autism Champion and Manager of our Inpatient Advocacy Service, worked incredibly hard to deliver a thoughtful and impactful day full of eye-opening facts and expert guest speakers. 

What we did not expect, however, was for the heavens to open and gift us with a beautiful winter wonderland the morning of the event. Even though we warned our guests to travel safe and leave plenty of time for travel, for some people the journey was just impossible. However, we at Advocacy Focus are a tenacious and resilient bunch, so we ploughed through the snow and arrived at the venue ready for the day ahead! 

To make sure that nobody who had booked to attend the conference missed out, we provided a Teams link for delegates to join, allowing them to participate in discussions and activities.  

Talk 1- Advocacy Focus Project Pilot Feedback, Presented by Ellie Bradley, Advocacy Focus 

Elie began the day with a thought-provoking presentation which provided a summary of last year’s pilot and shared feedback from the autistic people we have worked with in inpatient facilities. Allowing, them to voice their views regarding their care and treatment, along with their experience of Advocacy. What inpatients would like to see change or be done differently in the future was also shared with attendees. The session encouraged everyone to reflect on the support they are providing and what organisations can improve on to make sure that people are moving into the world of the autistic person. 

We created 5 videos to include the feedback from autistic patients which played throughout the presentation. You can watch the videos below to see exactly what their thoughts are on the care and support that they receive.  

Video 1 – Staff 

Video 2 – Meetings 

Video 3 – Environment 

Video 4 – Advocacy  

Video 5 – Suggestions 

If there was one thing to take away from Ellie’s presentation, it was a powerful quote which truly put one autistic person’s experience into perspective.  

“This has happened because people moved into my world. They stopped trying to drag me into theirs.” 

Talk 2- Legal Remedies for Autistic People and/or People with Learning Disabilities Within Inpatient Services, Presented by Mat Culverhouse, Irwin Mitchell 

Mat outlined the current and emerging legal frameworks which can directly impact autistic people and how these can be utilised to support the person’s rights while receiving care and treatment as an inpatient. Mat continued with the theme of advocating for the voices of those affected by a stay as an inpatient on a mental health ward, and shared powerful quotes from family and friends of autistic people who have been sectioned. This feedback included: 

“I am scared they may not come out alive.” 

“My son/daughter is in a forensic unit but has never committed a crime.” 

“They are not the same person who went into hospital.” 

“They are being treated as less than human.” 

These quotes alone are a powerful representation of the real issues that happen every day and how not only is the person deeply affected, but also those close to them. They set the tone for why it is imperative that families, friends and those who receive care as an inpatient, understand their rights and the legal options that are available to them. 

Mat then shared some facts about the scale of the situation. In November 2022, there were 5,335* reported uses of restrictive interventions in one month e.g., physical, chemical, mechanical, restraint and being kept in isolation.  

Mat’s insightful presentation also highlighted;  

  • Closed culture and the role of an advocate and guidance for CQC (Care Quality Commission) staff 
  • Building the Right Support policy paper 
  • Who I Am Matters – CQC report 
  • The options for legal challenge: First-Tier Tribunal, Judicial Review, and Court of Protection.  

Mat then outlined what comes next:  

  • Draft mental health bill and implementation of changes 
  • Continued work to hold the government to account for not adhering to previous intended timescales for moving autistic people and/or people with a learning disability out of Assessment and Treatment Units – Issues around Transforming Care and funding 
  • Impact of the government and other bodies (such as NHSE/CQC) action 
  • Irwin Mitchell’s dedicated pro bono legal surgery to provide specialist legal advice and support about Assessment and Treatment Units. 

Talk 3- National Advocacy Review, Presented by Kate Mercer, Black Belt Advocacy and Gaily Petty, NDTi (National Development Team for Inclusion) 

Gail and Kate invited attendees to be accountable and reflect on what could be improved within the advocacy sector. Some hard-hitting truths from the National Advocacy Review were shared, from people reporting that they felt they were treated as ‘less than human’ to reports of Advocates ignoring the needs of those they are supporting; their talk was a BIG eye opener and a call for the sector to act and to be better. 

Organisations were invited to reflect on the standard of their current practices in specific areas. It became clear that a real need was identified that the sector needs to improve on demystifying what advocacy is and promoting the acceptance of advocacy within Assessment and Treatment Units.  

The review uncovered some shocking accounts, one professional reported, “I found I had to push and push for people to get advocacy support when I was speaking to people out of our advocacy area.” 

The frustration amongst advocates also rang loud and clear, with one advocate highlighting, “Lots of professionals think we’re substitute social workers.” 

However, attendees from the sector did identify that the range of advocacy support in local areas was good, but many professionals are still unaware of advocacy and just what it is that an advocate can support with.  

Gail and Kate ended their session with a commitment to act. For attendees to make a pledge on how they will take action to improve the experiences of autistic people who are inpatients and be part of the driving force that makes a positive change to the advocacy sector.  

Talk 4- Looking Ahead, Presented BY Anna Moran (LSCFT) 

To bring the day to a close, Anna from Lancashire & South Cumbria Foundation Trust (LSCFT) shared The Trust’s proposed Action Plan on how they will make positive changes within their organisation and provided attendees with the opportunity to provide feedback and ideas on alternative ways of working together. 

LSCFT have developed a new Specialist Autism Team who are working to support wards to provide specialist support in clinical care. It was recognised that the themes highlighted by inpatients require systemic change, to ensure that they are reaching the entire autistic population, not just a few. 

To support autistic patients in accessing equitable inpatient mental health care, they have explored the following themes: 

  • Reasonably adjusted hospital settings 
  • Therapeutically beneficial staff interactions 
  • Equitable access to meetings for care planning 

Finally, Anna put forward to attendees the all-important question: “What are you going to do differently following today?”  


The day generated a huge amount of thought proving discussion and made it clear that there is a lot of health and social care organisations need to build on to improve the experiences of Autistic Inpatients in clinical settings. The advocacy sector also has a way to go in making sure that the services provided are truly person-centred to meet the needs of each autistic person and break down some of the barriers they encounter in accessing support. What was clear throughout the day though, is that there is a real commitment and dedication from the sector to improve.  

The chances are that you are someone, know someone, or have loved someone who is neurodivergent. We think it is important to recognise that autistic people can see and experience the world differently to those who are neurotypical. It is our responsibility to see things from their side, and to step into their world and see things from their perspective.  

We would like to thank everyone who attended, you have taken the first step towards action and will make a real difference to the experience of autistic people. 

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