What is Change NHS?
Change NHS was launched by the Department of Health and Social Care to gather the public’s views about the new 10-year plan for health in England. As part of that, charities and other organisations were asked to gather the ideas of the people they work with. At Autism Action, we know that access to healthcare is very important to lots of autistic people, so we decided to get involved.
You can find out more about Change NHS at change.nhs.uk.
What did we do?
We ran interactive online sessions, based on the Change NHS ‘Workshop in a Box’ plans. We also designed an online survey for people who couldn’t attend those sessions or who would prefer to give feedback in writing.
We gathered feedback from a total of 59 autistic people from our Community Advisory Panel and submitted it to Change NHS.
What is the NHS recommending for the 10-year plan for Health in England?
The new 10-year plan for Health is focused on three changes or ‘shifts’, these are:
Making better use of technology
The NHS could invest in better technology (e.g., electronic patient records or x-ray machines) to improve patient care and save healthcare staff time.
Moving more care from hospitals to communities
To save money and free up hospital beds the NHS could offer more care outside of hospitals such as at GPs, pharmacies or in people’s homes.
Preventing sickness, not just treating it
The NHS could introduce more programmes and support to help people live healthier lives such as weight management programmes or support to quit smoking.
What did we find?
Participants from the workshops and survey outlined fundamental failings in the NHS that prevent autistic people from accessing healthcare. Although it was felt that the suggested plans have elements that might benefit autistic people, attendees at our workshops and those who completed our online survey felt most proposed changes would not improve the current situation for autistic people accessing healthcare.
Concerns about the planned changes
Making better use of technology
Some participants shared that they can find it impossible to access basic NHS services. Some were concerned that technology might further limit access to healthcare. It is important that technology enhances the options for reaching healthcare (for example, using a phone, online booking, app, or walk-in) rather than replacing how healthcare settings are accessed (for example, providing only online booking). Some were worried that an over-reliance on technology could reduce the level of personalised care.
There were concerns about artificial intelligence (AI) being used with patient records. We heard that some autistic people experience misdiagnosis on their journey to their autism diagnosis and that some were concerned about AI failing to distinguish between misdiagnoses that had been marked as incorrect on their patient records and newer, more accurate diagnoses.
Moving more care from hospitals to communities
Some felt that moving care from hospitals to communities would only be effective for autistic people and people with complex health conditions if practitioners have a good working knowledge of autism and neurodiversity. It was felt that receiving care outside hospitals will make no difference if autistic people are still not believed or understood by healthcare professionals.
Some autistic people struggle with daily domestic tasks. There was concern that if more people were encouraged to recover at home, some autistic people would struggle with aspects like preparing meals and maintaining a clean environment, especially when coping with an illness.
Preventing sickness, not just treating it
Some felt that being autistic should be treated as a risk factor for illness as much as factors such as age, weight or high cholesterol. It has been suggested that autistic people are more likely to have complex trauma, face reproductive issues, eating disorders, injuries due to hypermobility, or other co-occurring health conditions. Many described the experience of being diagnosed as autistic to be a ‘domino effect’ of testing for other health conditions. However, the link between being autistic and having other conditions is not always recognised by healthcare professionals, so autistic people can get stuck in a cycle of fighting to be believed and treated.
Similarly, some felt that if the NHS wants to take preventing illness seriously, it needs to provide better support after an autism diagnosis. Many autistic people wait years to be diagnosed to find there is no follow-up support and this puts them at risk of a mental health crisis.
We heard the following suggestions to improve the NHS for autistic people
The NHS should improve its understanding of autism and other neurodivergent conditions.
The NHS needs to provide more extensive training to all healthcare professionals, so they have a comprehensive understanding of autism. Improved understanding means adjustments such as offering a quieter waiting room can become more common practice. Better training would also help healthcare professionals recognise issues such as communicating or experiencing pain differently to non-autistic people.
The NHS should provide clearer communication when supporting autistic people.
This might include communicating each step of a procedure, explaining why a question is being asked, or making clear when and where someone can access community care. The NHS could also use technology to better communicate with autistic patients. For example, staff could provide electronic information sheets or online videos to inform patients about what might happen during an appointment and to outline any unwritten rules.
Using technology could also offer alternative communication methods for patients who need them.
The NHS could provide a Neurodivergent Liaison in primary care services.
The Neurodivergent Liaison could provide a single point of contact and chaperone for registered patients, helping them to overcome barriers to accessing healthcare. They would also ensure that reasonable adjustments are put in place. They could also run workshops on topics such as ‘Attending a smear test’ and ‘Supporting healthy sleep habits’ and promote healthy lifestyles through social and support groups, (e.g., a walking group, or by arranging autism-friendly sessions at local gyms or swimming pools). They could also ensure other staff within their service are appropriately trained.
The NHS should focus on improving mental health services.
Participants felt the current plan failed to focus on mental health, which can also negatively impact physical health. It was suggested that the NHS should prioritise fixing mental health systems. Some were concerned that the current long waiting lists can leave people vulnerable, particularly those at high risk. Instead, there needs to be more intermediary care and better availability of talking therapies.
We heard that the NHS should consider alternative treatment options for autistic people and review how suitable and effective current standard treatments are for autistic people (e.g., CBT therapy or medication). Some felt that autistic people would benefit from more trauma informed care, and this should be considered by the NHS.
How did we consider accessibility when engaging with autistic people in this piece of work?
We are committed to being inclusive in everything we do, especially during our community engagement work.
We adapted materials supplied by Change NHS, such as presentation slides and workshop questions, to better suit potential workshop attendees. For example, by removing complicated language, reducing the text on slides, and removing any bright text or background colours.
We gathered potential workshop attendees’ preference for the format of the workshops. This feedback meant we ran workshops of different lengths (either a shorter session of only one hour or a long session of one hour 45 minutes) and presented some workshops using an easy-read format.
All workshops were delivered online to a small group. We provided all materials in advance to help attendees prepare any answers and feel confident in discussions. We offered regular breaks, the option to turn off cameras and communicate via the chat function.
After each workshop, attendees had the option to send us feedback on their experience and we will use this to inform our future community engagement work.
What’s next?
Interested in taking part in future surveys, focus groups or other community engagement activities with us? Join our Community Advisory Panel. You’ll receive updates, opportunities to share your views, and information about ways you can take action.
Need urgent help? If you’re having a difficult time or you’re worried about someone else and you need support, please visit our resources page.
