Understanding the Autistic Inpatient Experience
About
Over the past year, we have been delivering a bespoke service to autistic inpatients across Lancashire and South Cumbria. Our aims have been to gather autistic people’s views around their admission to hospital, discuss the environment and other factors of their stay, along with their experience of advocacy. Collating their experiences has enabled us to feedback to the trust around the views of autistic people and what they want to happen to improve their experiences, but also the future experiences of autistic people’s admissions to hospital. These experiences will play a key role in the strategic development of services across the Lancashire and South Cumbria NHS Trust network to ensure that services meet the needs of autistic people. Simultaneously, we have captured how advocacy has been beneficial for autistic people and what improvements need to be made to ensure that advocacy providers are meeting the needs of autistic people.
We have also delivered a provision for informal autistic inpatients across the Lancashire and South Cumbria region. We have provided support to those who would ordinarily fall through the gap of statutory advocacy provision but who are possibly still vulnerable and in need of additional support from an advocate during their hospital admission.
Our conference aims to:
- Share what we have learnt from autistic people across Lancashire and South Cumbria about their hospital admissions and advocacy
- Empower autistic people to share their experiences and their thoughts, whether positive or critical
- Provide a space for services to reflect on their own practices and whether they are meeting the needs of autistic people
We will hear from keynote speakers such as Kirsty Stuart (Irwin Mitchell solicitors), Gail Petty (NDTi) and Kate Mercer (Blackbelt Advocacy). Our speakers will share information about supporting autistic people in inpatient settings from a legal perspective, and findings from the national review of inpatient advocacy for people with a learning disability and autistic people in mental health, learning disability or autism specialist hospitals.
Location
SHOUT Network
Unit 1 Edward VII Quay, Navigation Way, Preston, Lancashire PR2 2YF
Agenda
9.30 – 10am – Registration, tea, and coffee
10-10.15am – Housekeeping and Welcome
10.15 –11am – Advocacy Focus Welcome
11-11.30am – Break
11.30am-12.30pm – Autistic People in ATUs, Court of Protection and Success Stories - Kirsty Stuart
12.30-1.30pm – Lunch
1.30- 2.30pm – National Advocacy Review - Kate Mercer & Gail Petty
2.30-2.50pm – Looking ahead - LSCFT
2.50-3pm - Closing
3-4pm – Networking at the American Diner
Speaker profiles
Gail leads the Advocacy Programme at NDTi, overseeing work supporting the independent advocacy community. She has worked in the public sector since the late 1980s. Her passion for advocacy and influencing change in health and social care began when she became a Citizen Advocate in the mid-1990s. She worked in a range of direct support roles such as intensive interaction practitioner, support worker and personal assistant before moving on to spend 10 years delivering, managing and developing independent advocacy services across London and the South East. Gail then took on a range of development roles, focusing on the implementation of the Mental Capacity Act, Personalisation, asset-based and outcome-focused commissioning, the roll-out and innovative use of Personal Budgets and the reshaping of Adult Social Care. She’s supported local authorities, NHS, community sector organisations, and private providers to translate policy and legislation to strategy and best practice, using co-productive approaches to enable individuals to have increased choice, control, and agency in their lives.
She has been Advocacy Lead and QPM Manager at NDTi since July 2015 and oversees The Advocacy Quality Performance Mark (QPM) Programme, Advocacy Awareness Week, and NDTi’s other advocacy-related activity, researching and supporting the delivery of high-quality independent advocacy. Her work is underpinned by an unerring belief in inclusion and social justice, individuality, community, reciprocity, rights, and the importance of each person’s voice. She is an advocate for independent advocacy and believes that the power and impact of high-quality, person-led advocacy can be transformative.
Kate Mercer
Kate has spent the last 20 years contributing to the advocacy community. She has worked on national projects with NICE, CSIP, NDTi and NHS England, most recently looking into the quality and availability of advocacy within in-patient settings for people with a learning disability and autistic people. She also helped to produce the NICE guidelines on Independent Advocacy. Kate runs a training organisation, 'Black Belt Advocacy' that offers support and formal qualifications to independent advocates including a National Advocacy Conference each year. She also acts as a family advocate, supporting families who have a loved one in mental health settings.
Kirsty Stuart
Kirsty is Associate Solicitor in the Public Law and Human Rights team at Irwin Mitchell. Kirsty specialises in community care, health care, and mental capacity law, bringing legal challenges via judicial review on behalf of both adults and children to seek appropriate care and treatment from the NHS, NICE, and their local social services.
Kirsty guides and supports clients in their rights to healthcare, medical treatment and other clinical disputes and cases which involve a crossover of medicine and law. These cases often raise issues of medical ethics and legal arguments relating to 'dignity', the 'right to life' or the 'right to healthcare'. Kirsty is an Accredited Legal Representative, so can act on behalf of those who have been deemed to lack capacity to conduct court proceedings.
Kirsty regularly works with families to ensure the appropriate care is sought to meet an individual’s needs at home so that they can leave hospital and to prevent admission when care packages break down using the framework of the Mental Capacity Act, Mental Health Act, Human Rights Act and challenges via Judicial Review.
Kirsty is the inaugural winner of the Legal Aid Lawyer of the Year Awards in the category of disability rights in 2021 and was appointed Chair of the Law Society's Mental Health and Disability Law Committee from in 2022. The committee ensures the rights and equality of treatment under the law of disabled people, those with mental health needs, and those in vulnerable circumstances.
Gail Petty & Kate Mercer's session descriptor:
'NDTi, alongside partner organisations, Speakup Self Advocacy, People First Independent Advocacy, Bringing us Together and the Challenging Behaviour Foundation have undertaken a review of advocacy for people with a learning disability and autistic people who are inpatients in mental health, learning disability or autism specialist hospitals. This review was commissioned by NHS England.
Independent Advocacy is a fundamental safeguard for people when they are most at risk of not having their rights upheld or of being excluded from decision-making about their lives. Access to independent advocacy is especially important when people are living and being supported in restricted settings. There are just under 2000 people with a learning disability and autistic people who are inpatients in mental health settings. Independent advocates are exclusively focused on ensuring people are being heard, and included in decisions and that their rights are upheld. The support of an advocate should be reliable, easy to access, person-led, and proactive.
The review aimed to find out what was getting in the way of people receiving effective and timely independent advocacy as well as identifying factors that enable advocacy to work well. This included what is working and not working in the commissioning and delivery of independent advocacy to people with a learning disability and autistic people who are inpatients in mental health settings. We wanted to understand this from the perspectives of lots of different groups of people to make sure we understood the full picture.
In this talk Gail and Kate will share the high-level findings of the review, highlighting areas that can be improved and addressed. The review report is expected to be published later in 2023.'