* Shortage of medicines for ADHD (Attention Deficit Hyperactivity Disorder)
There is currently (October - December 2023) a national supply shortage of the medication prescribed to help manage ADHD symptoms. You can follow this link to find more detailed information for patients, carers, and families.
You can also find local community support from the neurodiversity organisations on the Healthier Together website.
Neurodiversity
The term neurodiversity refers to the way that everyone’s brains naturally work differently from one another. Around one in seven people is neurodivergent, which means they behave, think, process, and interpret information in ways that differ to most other people.
We are #AutismADHDAllies
West Yorkshire Health and Care Partnership aims to achieve a 10% reduction in the gap in life expectancy between people with mental ill-health, learning disabilities and autism/ADHD and the general population by 2024. Achieving this ambition will make life better for more than 200 000 people living in West Yorkshire, including 130 000 people with Autism / ADHD.
In 2021 the Partnership initiated work to ensure that urgent and crisis care services meet the needs of Autistic people and people with ADHD. This project aimed to:
- identify the barriers autistic people face when accessing crisis and urgent health care (for both physical and mental health services)
- identify opportunities to improve access, by sharing good practice and testing new ways of working.
The project looked at the experiences of autistic people of all ages, primarily those who do not also have a learning disability. You can read the report from this work here.
During 2022-2023 we carried out an all-age Autism and ADHD deep dive across West Yorkshire. We worked with people with lived experience and our partners across all sectors to:
- understand the current experience of users and families of Autism and ADHD services.
- map existing Autism and ADHD provision, capture data and information.
- assess initiatives and ways of working to see if these could improve how the system works and the impact on individuals and families. Identify projected future gaps and issues to address and explore options to proactively address future projected need/areas of work.
We intended this review to be collaborative and inclusive with an ambition to make the best use of our collective expertise to improve services and shape the wider determinants of health; particularly addressing social inequalities faced by neurodivergent people.
To understand and learn from the experiences of adults, children and young people with Autism/ADHD who use services, we worked with our partners at Touchstone to hold workshops that brought out their insights and priorities.
This image captures their priorities:
Currently services for Autism and ADHD are designed and delivered in each of our places, and the deep-dive has provided the learning to help our places do this in more sustainable ways or to consider whether there are opportunities to collaborate across West Yorkshire in providing specialist support, that interfaces with strengthened primary care and local authority provision within each place.
You can read the Autism Deep Dive report here.
Autism Act 2009
The Autism Act 2009 was the first disability-specific piece of legislation in England. Over the decade since its inception, it has resulted in improvements in support for autistic adults across the country, and greater awareness of autism in society. However, we know that more still needs to be done to improve autistic people’s lives. You can read the national strategy for autistic children, young people and adults 2021 - 2026 and the Autism strategy implementation plan: 2021 to 2022 (Annex A) (publishing.service.gov.uk). There is also an EasyRead version available.
Identity-first language
When it comes to referring to autism and autistic people, there are usually two ways of going about it. The first is person-first language. This is where someone would say “They have autism” or “people with autism”.
The second is identity-first language. Instead, of saying someone has autism, they say that someone is autistic. A couple of common examples are “Luke is autistic” and “autistic people”. Identity-first language is something that many within the autistic community use quite frequently. They see it as a logical choice; autism is something that’s part of you, rather than something you carry around. Lorcan Kenny’s research for the National Autistic Society found that many autistic people who responded to a survey preferred identity-first language. You can find out more about identity-first language on the Leeds Autism Aim website.
Accessibility, help and guidance
Leeds Autism AIM has worked with neurodivergent people to put together a guide that explains how to make information accessible to neurodivergent people in a number of ways. This free document has examples of good and bad practice and a number of links to making accessible info, as well as general tips you can use.
Leeds Autism AIM, West Yorkshire Police and other local organisations have coproduced a free autism alert card. Initially, the card is available for autistic adults in Leeds to use. The card can be used to help communicate your needs and how being autistic affects you in stressful situations.
In Calderdale, the SEND Reference Group, Tough Times Reference Group and Calderdale Young Commissioners have created this two page guide on what they as young people feel is important to them when having an assessment. Each young person has undertaken some kind of assessment during their lives for various different reasons, several members having had an autism assessment. The guide lists what they think should happen pre-assessment, during an assessment and after an assessment.
West Yorkshire Health and Care Partnership has secured funding for the next phase of developing the Myne app. The aim of the app is to support neurodiverse people in communicating their needs. Watch out for updates and opportunities to get involved.
Leeds Community Healthcare NHS Trust has produced some helpful Easy Read guides for people coming for an assessment for autism or other neurodevelopmental disorder.
About my autism assessment appointment
About my neurodevelopmental assessment appointment
The International Journal of Positive Behaviour Support (IJPBS) has released an updated UK definition of Positive Behaviour Support (PBS), co-developed with people with lived experience of learning disabilities, and autistic people, as well as family carers and professionals from across disciplines.
In response, Bild is developing and updating free resources throughout 2022, through further co-production with people with learning disabilities and autistic people, family carers and other organisations. Those resources will include:
- A plain English summary of the Positive Behavioural Support in the UK: A State of the Nation Report content
- An updated web-based animation that provides an easy-to-understand introduction to PBS theory and practice
- An updated accessible infographic that can support understanding of the concept of PBS
- Launch of the Bild and UK PBS Alliance What does good PBS look like and how to spot bad PBS practice resource.
You can read more about the new definition on the Bild website.
Other resources to watch, listen to and share
Watch a video about the work to improve the health of autistic people, from the National Director for Learning Disability and Autism at NHS England, Tom Cahill. He says how important it is for health services to work with and listen to autistic people in developing their services.
Watch a video about the commitments the NHS has made to autistic people from the NHS Chief Operating Officer, Sir David Sloman. This includes improving the diagnostic pathway and post assessment support, reducing health inequalities and improving access to, and the quality of, mental health inpatient services.
West Yorkshire Health and Care Partnership Autism Champion Dr Conor Davidson writes a blog for the Royal College of Psychiatrists about Autism.
Supporting autistic people to use health services- making reasonable adjustments
Small changes to health services can help people to feel comfortable and able to get the help they need. Sometimes these are called reasonable adjustments.
Listen to a podcast of an autistic person, a family carer and a GP discussing changes that can be made to appointments to make them work well - Supporting autistic people in primary care
Watch a short video about how health can be improved by making reasonable adjustments in local services (called primary care services) from our Medical Director for Primary Care, also a GP, Nikki Kanani.
Autistic people sharing their stories on NHS.UK
- Rosalind who talks about her journey as an autistic woman. She talks about phobias and sensory needs as she grew from a young person at primary school to an adult who has travelled to parts of the world
- NHS Learning Disability and Autism Advisory Group member Adrian, shares his story of how he expresses himself through artwork and his hope that society will become more respectful of others
- In Joe’s video, he speaks about how been autistic makes him unique and has given him to drive to achieve lots of things
Improving the quality of inpatient mental health services
Find out how NHS England is working to improve the quality of mental health support for all autistic people, both close to home and if needed in hospital in Sarah Wright's blog.
Inclusion in the workplace
Read about creating a workplace where autistic people can thrive by making small changes to the workplace, in Jo Whaley's blog
Research
NHS England has published its five-year autism research strategy for England.
Why a research strategy is needed - Change is needed to ensure health policy and clinical decisions about the care provided to autistic people is consistently based on the best available scientific evidence. Co-ordinated and strategic action is needed to improve our ability to act with urgency without undermining our ability to measure the effectiveness of healthcare changes made. This research strategy sets out the first steps that need to be taken to build better evidence-based healthcare for autistic people in England.
Making health services better with people who are neurodiverse
This report can be described as a small-scale action research project which set out to gain a deeper and richer understanding of how to support the development of kinder, more compassionate and more effective health services with people who are neurodiverse.
Preparing autistic young people for work experience, employment or further training
When they finish school, few autistic young people move on to college, further training or the workplace. Only 21.7% of autistic individuals are in full or part-time employment (Office for National Statistics, 2020).
Ambitious About Autism is a national charity for children and young people with autism and their aim is to enable more autistic young people to reach their potential by equipping those who support them with the skills and knowledge to understand their needs. Just 19% of young people with autism say they have had good careers advice and a quarter of young people with autism have had no access to work experience (Ambitious about Autism, 2016).
These resources provide the tools to help autistic young people prepare for work experience, employment or further training.
employment-toolkit-for-young-people-ambitious-about-autism.pdf (autismeducationtrust.org.uk)
employment-toolkit-for-employers-ambitious-about-autism.pdf (autismeducationtrust.org.uk)
employment-toolkit-for-professionals-ambitious-about-autism.pdf (autismeducationtrust.org.uk)
transition-to-employment-toolkit-ambitious-about-autism-new-logo_0.pdf (autismeducationtrust.org.uk)
Autistic adults
On average, autistic adults in England face significant health inequality, poorer access to healthcare and they die 16 years earlier than the general population. You can find out more about this here.
Disability or diagnosis is not the reason for this inequality; instead it is the result of services not meeting people’s needs. For autistic people it can be difficult to stay well and get help when it is needed.
Our Partnership has 10 Big Ambitions and one of those is to reduce the gap in life expectancy for autistic people, people with learning disabilities and people with mental health conditions by 10% by 2024. Achieving this ambition will make life better for more than 200 000 people living in West Yorkshire.
We believe that one of the ways we can do this is to work with autistic people to ensure that urgent and crisis services are appropriate for neuro-diverse people (those on the autism spectrum and/or with ADHD), and to identify ways to improve access either by sharing good practice or by testing new ways of working.
At the same time, we are working to make our services for neuro-diverse adults more consistent across all of our places in West Yorkshire, so that we achieve more consistent outcomes for people. This includes services for people in prison and those under the supervision of the probation and substance misuse services.
You can find out more about the work we are doing to develop meaningful support across our places for autistic people and people with learning disabilities in our strategy document here and an easy read version here.
Autistic children and young people
Getting a diagnosis of a neurodevelopmental condition in early childhood can significantly help a child or young person and their family.
If neurodiversity is not recognised then people are highly likely to end up being treated for other conditions instead such as anxiety and depression or personality disorders which can lead to psychosocial impairment and co-morbidities.
Our ambition is to develop a “local service framework” for how autism and neuro-diverse diagnosis and support should be provided across West Yorkshire. We need to do this because we want there to be more consistency in how our providers deliver their services throughout the assessment, diagnosis and post-diagnosis support processes.
We are working with our colleagues in Primary Care Networks to find the most effective ways to reduce waiting times for specialist services and to supplement the period of waiting for and receiving a diagnosis with appropriate and timely support for families.
We are focusing on these important areas of work:
- Making improvements to pre-diagnostic support, considering the needs of carers and family members; piloting work in Leeds, Wakefield and Bradford.
- Raising awareness, including the use of digital technology to support wellbeing, working with Yorkshire and Humber Academic Health Science Network to scope a wellbeing app.
- Standardising approaches to specific pathway challenges such as requests for second opinions, responses to private diagnoses and communication between services.
Nationally NHS England & Improvement is developing a programme of work on ASCs that will provide us with further direction from 2020 onwards. Our work will align with that direction in time.
Barnardo’s West Yorkshire Keyworker Service Model of Delivery and information for partners
The NHS England & NHS Improvement Long Term Plan and vision is that by 2023/24, children and young people with a learning disability, autism or both with the most complex needs will have a designated Keyworker, implementing the recommendation made by Dame Christine Lenehan in her review “These are our children”.
Initially, keyworker support will be provided to children and young people who are inpatients or at risk of being admitted to hospital. Key worker support will also be extended to the most vulnerable children with a learning disability and/or autism, including those who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services. (Paragraph 3.33, Long Term Plan)
The initial phase of this work 2021-2023 is focussed on “children and young people who are inpatients or at risk of being admitted to hospital”.
This document describes the keyworker model – work in progress.
This document is a leaflet of information for young people and their families
The Keyworker Service aims to:
- work as part of a multi-agency approach and offer specific support and coordination over and beyond what may be provided by Multi-Disciplinary Teams
- help the family understand the child/young person’s needs and navigate their journey through the system
- ensure the child, young person and their family are at the centre of any planning and discussions
- ensure good communication is in place
- advocate, support, challenge and influence problem-solving to pull a strong coordinated personalised package of care together
- support the provision and implementation of a tailored holistic package of support to help the child or young person and their family
- be enablers, navigators, facilitators, identifiers of gaps and opportunities
- identify, guide and refer to other services where needed e.g. carer support services, Mental Health Services, short breaks provision etc.
- facilitate effective communication between the child/young person, the family and the practitioners
- champion the child/young person and their family in discussions around provision of care as required
- link in with parent/ carer forums to update them on programme and link them in with co-production plans and opportunities support the maintenance of young people in their own home and prevent escalation of need, wherever possible
- work collaboratively to prevent admissions to in-patient care through preventing placement breakdown.
Other documents in the information pack are:
Young person agreement to receive services form
Parental agreement to receive services form
Data protection young person rights leaflet
Full privacy rights information
You can find out more about the work we are doing to develop meaningful support across our places for autistic people and people with learning disabilities in our strategy document here and an easy read version here.