Autism Plan 2024-2027

Contents

Introduction 
Context to the Plan
National and Local Drivers for Change
Where are we now?
Consultation: Who have we listened to in developing this plan?
Our alignment to Trust Values, Objectives and Strategies
Delivering the Plan
Three-year Objectives 
Indicators of Success

Introduction

The aim of this document is to set out a 3-year plan (2024–2027) to support patients who are autistic throughout their journey of care in Lancashire Teaching Hospitals NHS Foundation Trust (LTHTR). The Autism Plan considers care within the Emergency Departments, Inpatient and Outpatient areas and covers all ages (children, young people and adults).

 At LTHTR we are committed to providing outstanding, patient-centred, and individualised care. It is crucial that our patients feel safe, listened to and have confidence in the knowledge and skills of our staff. The plan aims to ensure positive experiences and involvement of families and carers who play a pivotal role in their loved ones/ patient’s journey. This Autism Plan builds on the work that has been completed over recent years. It provides a clear commitment for continuing this progress and aims to ensure continued development, a drive to reduce health inequalities and co-production with autistic people and experts by experience (families/carers)

The Trust recognises and welcomes the opportunity to work in partnership with our multi-agency partners including health, social care, voluntary agencies, our Integrated Care Board/System colleagues (responsible for planning and ensuring provision of health services) and patient / user involvement groups. Through working in partnership, we will ensure our collaborative efforts contribute to improving the health and outcomes of autistic people.

This plan will be made available in an accessible version.

Context to the Plan

The Autism Plan recognises that the terms Neurodiverse, Autistic people, Autism, Autistic Spectrum Condition and Autistic Spectrum Disorder may be preferred by people. This plan focuses on individual strengths and needs, although recognises and respects that our patients may prefer ‘autistic, neurodivergent or a person with autism’ throughout their journey of care.
Autism :

• Autism affects the way a person communicates and how they experience the world around them. Autism is a spectrum condition which can vary in how it impacts on somebody and the level of support that may be needed across a person’s life.  Ambitious about Autism
• Some autistic people have average or above average intelligence.  NHS ‘What is Autism 2024’
• However, research indicates that many more people may be undiagnosed: In 2018 0.82% of the English population was diagnosed and up to 1.2 million (or 2.12%) of the population may be autistic and undiagnosed. (Lancet, 2003) NHS Digital estimates that 1.1–1.2% of the population are undiagnosed for autism.

NHS England, ‘People with a learning disability, autism or both Liaison and Diversion resources’ (2019) noted that Autistic Spectrum Conditions are not classed as a learning disability. However, 20–30% of people with a learning disability also have autism and people with autism are more likely to experience mental health problems.

The difference between a Learning Disability and Autism is recognised and therefore a separate Learning Disability Plan and Autism Plan has been developed. However, following a number of consultation events with people with a lived experience we have recognised that there are overlapping priorities in the action plan for services delivering care for people with either a Learning Disability or Autism (or both). These include - data collated for the NHS England (NHSE) Learning Disability Benchmarking Standards to include autistic people, improvement within the agendas of Special Education Needs and/or Disabilities (SEND) and Learning from lives and deaths – people with a learning disability and autistic people (LeDeR).

The Five-year NHS Autism Research Strategy for England recognises that autistic people have greater difficulties accessing health care. The Equality Act 2010 ensures that all people accessing healthcare have equal opportunities to care and to treatment. Equality for people with disabilities may require the organisation to make reasonable adjustments to its service to accommodate specific or additional support needs of those with disabilities. As a Trust we are committed to ensure that all patients have equal rights, feel listened to have the opportunity for involvement in improvement programmes with an aim of co-production. The Autism Plan has been led by patient, family, carer and staff feedback

Special Education Needs and/or Disability (SEND)

The Autism Plan ensures a shared vision in the implementation of reasonable adjustments, aims to reduce health inequality, and is committed to ensuring that autistic patients aged 0–25 years and SEND have a positive experience from a skilled workforce. Special Educational Needs and/or Disabilities (SEND) forms Part 3 of the Children and Families Act (2014) and covers the age range of 0–25 years. Schools are funded to meet the majority of Special Educational Needs (SEN) and support and adjustments will be arranged to meet the child or young person’s needs – set out in a SEND support plan. At times an Education, Health, and Care Plan (EHCP) is needed to ensure health, social care and education work together to meet these needs. The Trust is committed into their statutory obligation for SEND, the EHCP process and ensuring our services are identified in the SEND Local Offer (which describes the services offered by agencies).

Learning from Lives and Deaths - People with a Learning Disability and Autistic People (LeDeR)

The LeDeR programme aims to improve health and social care for people with a learning disability and autistic people, to reduce health inequalities and to stop people from dying too soon by making care better. A LeDeR review will look at a person’s life as well as how the person died, this helps to identify good practice, improvements for care (health and social) and agencies work together to understand any lessons learned. We as a Trust are committed to learning and being part of the LeDeR process.

National and Local Drivers for Change

The LTHTR Autism Plan sets the Trust’s commitment in line with local and national strategies including –
The National Strategy for autistic children, young people and adults (2021–2026) which for the Trust specifically relates to -

• Improving understanding and acceptance of autism within society.
• Supporting positive transition into adulthood
• Tackling health and care inequalities for autistic people.
• Building the right support in the community and supporting people in inpatient care (LTHTR specifically supporting pathways and multi-agency discharge planning to support our autistic patients).

• The NHS Long Term Plan (2019) ensuring that NHS commissioned services provide good quality healthcare and treatment to autistic people, that NHS staff make reasonable adjustments to ensure equal access, experience and outcomes and that the NHS has an aware of the needs of people with autism.
• The Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) policy (2021)
• Lancashire SEND Plan 2021–2025
• Safeguarding statutory requirements and Mental Capacity Act (2005)
• The Lancashire & South Cumbria Strategy (2022) All-Age System Strategy for Autism
• Think Autism (2014)
• Autism Act (2009)
• NHS England National Framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards (2023)

Where are we now

• The Trust has invested in a Matron for Mental Health, Learning Disabilities, Autism and Dementia and a Learning Disability and Autism Specialist Practitioner/Nurse who support patients, families and specialist teams to consider reasonable adjustments, to deliver person centred care and to work closely with multi-agency partners including the Local Authority, Mental Health Trust, Community Learning Disability services, other Acute Hospitals, local community Trusts and the Integrated Care Board.
   
• The completion of the annual NHSE/NHSI Learning Disability Benchmarking Standards for 4 years and submission for the 5th year – providing data analysis to the standards, patient feedback and staff feedback. Data includes care for our autistic patients.
   
• A Reasonable Adjustment flag for autism (and other visual or hidden disabilities) on electronic patient records which allows us to ensure staff are aware of the changes (adjustments) that are needed to support care – for example, adjusted times and length of appointments, changes to support sensory needs or communication aids. This flag has been developed with autistic patients.
   
• Continuous Improvement within the Community Neurodevelopmental Paediatrics Team including review and development of the community neurodevelopmental pathways, development of the autism spectrum disorder (ASD) Programme Co-ordinator and ASD Pathway Navigator, reviewing and streamlining of service provision, data collection and post diagnostic support for the parents of pre-school and school age children.
  
  
• A Special Care Dentistry service which is focused on ensuring our patients with a Learning Disability, autism or mental health difficulty are supported to access dental care, have reasonable adjustments ensured, close working with families and carers and a dedication to reducing anxiety by using different methods (for example: written or video social stories). And, Special Care Dentistry working on transition clinics, so children with complex needs have a transition plan is developed from starting High School/age 11 years.
   
• Bespoke training sessions with our Learning Disability and Autism Champions and specialist teams often co-delivered with people with lived experience. Sourced training days from the National Autistic Society pre-COVID-19.
   
• The development of a mandatory e-learning module on Learning Disabilities and Neurodiversity, co-working between the LTHTR Learning Disability/Autism Team and Trust Neurodiversity Lead to include Oliver McGowan training
   
• Established Learning Disability and Autism Champions who provide the ward with increased knowledge, receive training including by people with a learning disability and / or autism are the link to positive patient experience on the wards and departments.
   
• Involvement in the Integrated Care Board (ICB) task and finish groups including the Autism Partnership Board Health and Social Care Group - Ensuring learning into action for service development.
   
• Engagement with the LeDeR (Learning from lives and deaths-people with a learning disability and autistic people) Steering Group. Active involvement, and implementation of lessons learned and learning from patient experiences, and internal processes to ensure LeDeR notifications are submitted.
   
• The development and implementation of LTHTR Hospital Passports, and education around their use and improvements for patient care for autistic people or patients with a learning disability. (Seee image below)
   
• Involvement in Lancashire & South Cumbria SEND Partnership - including a SEND clinical lead and SEND Champion, working with the SEND Designated Clinical Officer into the completion of Educational Care Health Care Plans (EHCP)
   
• Established a SEND Improvement group share the message of SEND, ensure service improvements are aligned to the SEND priorities and the Trust are driving forward SEND (for example Transition, data capturing and Neurodevelopmental pathways)
   
• Improved systems to understand patient experience and incidents – changes made to the Trust incident reporting system to include Learning Disability and Autism (as per NHSE Standards) which can capture compliments, concerns and complaints of patients, families and carers. Close working with the patient experience team.

It is recognised that although we have had a journey of improvement, our progress has been significantly stalled as a result of COVID-19 and much of the work commenced is being re-started or continued.

Image Description

The hospital passport has a green top border with a graphic representation of a pair of hands in the top left hand corner. The hands form together to make a heart shape hole. The right hind of the border features thela Lancashire Teaching Hospital Logo.

The main body of the image features a  white background with a border of blue. Along the top of the image there are four icons in blue. One of a hospital, one  representing an ambulance, one of a first aid kit and one of a hospital H road sign.

Then follows text on the image.

The title 'Hospital  Passport' in black capitals on a light blue band.

This is followed by the paragraph text in blue 'when you come into hospital we want to make sure tthat we care for you really well. This passport gices hospital staff important information about YOU and a brief account of any additional needs you may have that the staff taking acre of you may not know.'

The text in black follows ' Please take it with you if you have to go into hospital. Make sure that all the staff who need to know about the information read it.

ALL NURSES and MEDICAL STAFF MUST READ THIS INFORMATION

I have some one who supports me, their name is:'

The blue text sentences follow:

'Their telephione number is:

Please involve them 9see page 2)

Date completed:

Completed by:

Relationship/Designation:

Consent: Are you happy for us to share your information? please tick a box'

There  are then two tick boxes yes and no. Each tick box has a graphic of a smiley in a speech bubble next to it. The yes tickbox has green square style speech bubble with happy face smiley.
The no tickbox has red square style speech bubble with sad face smiley.

Along the bottom border of the image has the words 'Adapted from the original produced by Gloucestershire Partnership NHS Trust'

Consultation: Who have we listened to in developing this strategy

Consultation with people with lived experience (autistic people, a learning disability or both), experts by experience (families and carers) and multi-agency consultation has been key for the development of this Autism Plan.

Key people have included:

• Two consultation events including autistic people, families, and carers.
• Local advocacy groups.
• Lancashire Teaching Hospitals NHS Foundation Trust Patient Experience and Involvement Group
• Lancashire Teaching Hospitals NHS Foundation Trust Learning Disability and Autism Champions
• Lancashire Teaching Hospitals NHS Foundation Trust Specialist Teams including the Community Neurodevelopmental Paediatrics team and SEND Clinical Lead.
• Lancashire Teaching Hospitals NHS Foundation Trust Patient Experience and Patient Advisory Liaison
• Service (PALS) teams.
• Lancashire Teaching Hospitals NHS Foundation Trust Governors.
• Multi-agency partners across the Integrated Care Board including leads / members from SEND and LeDeR groups.
• Lancashire Teaching Hospitals NHS Foundation Trust SEND Improvement Group.

You said in the consultation:

What should be our first 3 priorities be for the Autism plan?

training for staff
better understanding
sensory friendly
more resources
sensory profiling
hospital passports
resonable adjustments
commissioning

autism pathway development
easy read information
resource to make change
resource to make changes
change in attitude
increase understanding
understanding individuals
involve patient and carer
flexability

burnout
inclusion
prior planning for care
hidden disability
y p support
listening to carers
support for carers
ward activities
thinking outside the box
easier points of contact
non judgmental care

Ideas for Co:production 

expert by experience
easy read information
feedback in easy read
better feedback
include patients
video messages
discharge paperwork
better signage
 

care planning
improved communicaton
new forums
focus groups
more link nurses
accessible information
attend anywhere
send

transition clinic
info in waiting rooms
learning from leder
circulate briefings
ward activities
teams meetings
link with special schools
engaging with bame
communication campaign

Examples of Positive Practice

mdt meetings
films to support access
the ld team involment
apls
being proactive
pre planning
key contacts
reasonable adjustments

follow up of information
use of communication aids
good communication
building on existing care
quality of resources
de sensitisation
seeking to understand
sharing postive stories
health days
 

hospital passports
involing key parties
vanguard theatre
fast track options
early reponse
directory of resources
using real stories
consistency
using social stories 

The Trust is committed to ensuring actions from learning and the strategy has been developed considering patient's family or carers experience and feedback.

Our Alignment to Trust Values, Objectives and Strategies

Our values

This Autism strategy aligns with the Trust mission, ambitions, and values. Our values were designed by our staff and patients and are embedded in the way we work on a day to day basis, are at the core of everything we do and are embedded to guide high quality, patient-centered care:

Compassionate

A culture where we treat patients and colleagues with compassion, understanding and with kindness.

Respectful

A culture where all roles or backgrounds are valued and equal, ideas are welcomed, we feel respected and supported.

Empowered

A culture where we are empowered and enabled to act to the full remit of our roles, we understand what we can do and feel able to act without permission.

Collaborative

A culture where we recognise we are part of a bigger team, willing to work across boundaries to support others to achieve their aims.

Performance Focussed

A culture which is performance focussed, we strive to be the best. We are happy to be held and hold others to account in a positive, supportive manner, we are reflective and do not seek to blame.

Alignment to Trust Objectives

The objectives defined in this plan are framed on the Trust’s core objectives which are:
To provide sustainable and outstanding healthcare to our local communities
To offer a range of high-quality services to patients in Lancashire and South Cumbria
To drive health innovation through world class education, training, and research
These objectives are translated into key deliverables founded on four ambitions:

Consistently deliver excellent care

Improve outcomes and prevent harm
Get it right first time
Work in partnership to deliver a positve patient experience
Ensure a safe, caring environment

A great place to work

Promote health and wellbeing 
Inform, listen and involve
Value each other
Develop people

Deliver value for money

Spend well
Spend wisely
Spend less

Fit for the future

System working
Place based partnership
Strategy and transformation

The Autism Strategy is closely aligned to other Lancashire Teaching Hospital (LTHTR) strategies including:
The Learning Disability Plan 2023–2026
The Mental Health Strategy 2021–2024
The Patient Experience and Involvement Strategy 2022–2025
The Equality, Diversity, and Inclusion Strategy 2022–2025

As previously highlighted our patients may have a mental health difficulty or learning disability and therefore alignment at times may be appropriate. It has also been key to align this strategy with ‘The Patient Experience and Involvement strategy,’ and the ‘Equality, Diversity and Inclusion strategy’. These strategies similarly provide a clear plan to improve patient experience at LTHTR through the Trust ambition to ‘Consistently deliver excellent care’ and the aim for co-production with a more meaningful level of involvement and equal footing for
decision-making.

Delivering the plan

The delivery and success of the Autism Strategy will be governed through a number of established groups within
Lancashire Teaching Hospitals including –

• The SEND Improvement Group for the SEND specific focused improvement and action planning.
• The Patient Experience and Involvement Group, a sub-committee of the Safety and Quality Committee with specific focus on patient experience and quality
• The LTHTR Safeguarding Board within which the mental health, learning disabilities, autism and dementia team report into.
• The Trust Mortality Committee where LTHTR LeDeR annual feedback will be ensured and an annual report benchmarking against the national annual report in context of learning will be completed.

The Autism Strategy recognises the need for patient involvement and a drive to achieve co-production. Further opportunities for review of the Trust Strategy will be achieved with our local autistic advocacy groups.

Three Year Objectives

The Trust’s three-year plan to deliver the plan is based upon the national standards developed by NHSEI and is set out below.

Strategic Priorities Commitment: Respecting and Protecting Rights

Aim:

1. We will demonstrate the ability to isolate and disaggregate specific outcome data for patients with a Learning Disability as per NHSEI Learning Disability Standards

2. We will demonstrate reasonable adjustments to care pathways to ensure patients can access highly personalised care and achieve equality of outcomes.

3. Patient feedback and experience will indicate a culture of reasonable adjustments and positive, high quality care.

4. Children, Young People and Adults with a Learning Disability will have their rights protected in line with the mental capacity act and least restrictive practice

Strategic Priorities Commitment: Inclusion and Engagement

Aim:

1. To ensure inclusion and engagement with autistic children, young people and adults, their families, and carers

2. To aim to a partnership of co-production

3. To ensure accessibility to healthcare and a positive patient experience

Strategic Priorities Commitment: Workforce

Aim:

1. To increase and maintain the knowledge and skills of our workforce in delivering high quality care for autistic patients.

2. To ensure or families and carers caring for loved ones/patients with autism are supported, involved in decisions where appropriate and resilience of the family / carer is recognised as key.

Strategic Priorities Commitment: Special Educational Needs and Disabilities (SEND)

Aim:

1. To improve the outcomes for children, young people and young adults with SEND

2. To improve communication for children, young people and young adults with SEND

3. To improve the SEND journey

4. To ensure preparation for adulthood and transition pathways

5. To improve access to services

Indicators of Success

This Autism Plan for Children, Young People and Adults provides a clear direction for continuous improvement for Lancashire Teaching Hospitals NHS Foundation Trust for the period of 2024 - 2027.

Our plan is aligned to NICE guidance and developments within the Lancashire and Cumbria Integrated Care Board (ICB).

Lancashire Teaching Hospitals NHS Foundation Trust is committed to ensuring that as an organisation we make this reality through our own value system, strong leadership, the development of our workforce and seeking to involve experts by experience, families, carers and multi-agency partners in everything we do.

The progress of this plan will be driven and monitored through a newly established forum for people with a Learning Disability and their families and carers. This plan will also be delivered through our SEND Improvement Group and Patient Experience and Involvement Group. Assurance will be provided to the Trust Safeguarding Board, Mortality Committee and Safety and Quality Committee.

Indicators of success will include-

• Positive Patient, family, and carer experience.
• The continued alignment to the ICB, multi-agency working and drive to ensure access to health care.
• Progress for co-production and co-delivery of the Autism Strategy.
• The evidence of increased Reasonable Adjustments recorded on electronic patient records.
• Data collation/dashboard for SEND and business intelligence into the Community Neurodevelopmental Pathways.
• A workforce who feel confident and knowledgeable to use communication aids, ensure the use of Hospital Passports and are engaged in the Learning Disability and Autism Champion events.
• Quarterly and annual reports which highlight continuous improvement, established processes and outcomes of audit.
• The increased availability of a catalogue of Social Stories and Easy Read leaflets in relation to health and LTHTR Specialist Teams