I started this 12-month secondment from the Adult Safeguarding Team at Hampshire Hospitals in February 2025. In my role as the Trust’s All Age Autism Specialist Lead, I aim to influence practice and initiate change across our services to improve the consistency, quality and equity of care for our autistic patients and communities. 
Over the past six months, I have gained valuable insights into the challenges and opportunities involved in improving care for autistic patients, and I am pleased to outline the progress we have made so far.
A common goal to improve care
There’s a strong feeling across our hospitals that we want to improve how we care for autistic people. Every day, our staff work incredibly hard under pressure, but there’s a real drive to learn, adapt and make changes that help everyone feel safe, respected and understood when they come through our doors.
We know autistic people are part of our community – both as patients and staff. We have around 8000 staff working for Hampshire Hospitals and a patient catchment of around 600,000. The national estimate for the prevalence of diagnosed autism is 1:100. Translated, this means we are likely to have a minimum of 80 staff and approximately 6000 patients who are diagnosed as autistic. These numbers do not include those who are awaiting a diagnosis or who identify as autistic without a diagnosis being sought or those who may be unaware that they may be autistic.
Although my role is focused on supporting patients, I’m working closely with others in the Trust who are also improving how we support neurodivergent colleagues too.
Listening, learning and working together
I’ve had the chance to connect with many different teams who are working to improve the experience of autistic patients across the Trust. Highlights include:
- Digital systems - exploring how we can recognise and escalate the need for reasonable adjustments in a consistent way across all clinical systems.
- Fundamentals of Care - improving systems to help staff have the right conversations at the right time and provide the required evidence to best support an autistic person while they are accessing our services.
- Paediatric ophthalmology – supporting the clinical team to run parent-child feedback forums to learn directly from families.
- Safeguarding - working together to develop tools to support staff in understanding how executive function (skills like planning, organisation, memory, attention and problem-solving) impacts mental capacity assessments.
- Palliative care - making sure patients feel comfortable with the idea of receiving care at Winchester Hospice if appropriate, by supporting the clinical team in creating more accessible, adaptable information.
- Accessibility group - working to improve the accessibility of signage and communication resources, such as letters and leaflets, for autistic people.
We know that a neuroinclusive approach to system and process design will ensure that everyone benefits from the opportunity for an adapted approach to information provision, communication and delivery of care and support.
Progress and partnerships
During my time at Hampshire Hospitals so far, I’ve gained insight into the many workstreams underway to improve the experience of autistic patients, including:
- Creating an Autism Resource page on the staff intranet - bringing together information and guidance on ‘What is Autism?’, how it can present, best practice, health/autism passports and profiles, and patient experience perspectives.
- Reviewing the ASD (Autism) Tag - working with senior paediatric colleagues to review the ASD (Autism Spectrum Disorder) Tag and the Communication and Language Difficulties (CLD) Standard Operating Procedure (SOP).
- Updating SOPs and policies - supporting the review and development of procedures relating to the care and support of autistic patients.
- Providing direct staff support - acting as a point of contact for colleagues seeking advice, signposting and practical tips for caring for autistic patients.
- Linking with local and regional networks - working with the Hampshire Autism Partnership Board to ensure autistic voices are heard and represented within our systems and processes development. Working with the Hampshire and Isle of Wight ICB (Integrated Care Board) Learning Disability and Autism Programme, ensuring that we identify and support autistic and learning-disabled patients who may be considered at risk of a Mental Health Act assessment and/or admission to a mental health hospital bed. This ensures we take all steps to support them safely and effectively in the community while avoiding unwarranted Mental Health Hospital admissions.
- Learning from feedback - carrying out thematic reviews of incidents, complaints and informal patient interviews to highlight areas for improvement.
- Training delivery - acting as a subject matter expert, alongside colleagues in the Trust, for the Oliver McGowan Mandatory Training programme, and developing additional training resources to supplement it.
- Sharing good practice - identifying services already achieving positive outcomes through person-centred approaches and working to model this across more areas of the Trust.
These projects are helping to create more consistent, person-centred care for autistic patients. Many teams across Hampshire Hospitals are already successfully adapting their approach to meet individual needs, particularly where staff can provide more one-to-one support. We know that high workloads can make this more challenging, but by sharing examples of what works well, we aim to inspire and embed these approaches across all our services.
We’d love to hear from you
If you’re an autistic person or a parent or carer of an autistic child or young person who has used our services at Hampshire Hospitals and would like to share feedback, positive or constructive, please get in touch via helen.toomer-jones@hhft.nhs.uk.
Likewise, if you work with autistic people locally and would like to link up, we’d welcome the opportunity to collaborate.
Together, we can create services that feel safe, kind and inclusive for everyone.
Helen Toomer-Jones
All Age Autism Specialist Lead
This role has been proudly funded by Hampshire Hospitals Charity.
