NHS England’s Long Term Plan was published earlier this week and outlined proposals to improve the health and wellbeing of autistic people (read our response here). In this blog, Robyn Steward, who is an Autistic Ambassador for the National Autistic Society, considers what the plan means for people on the autism spectrum and offers some simple tips for NHS staff and services.

There are around 600,000 autistic people in England. Each autistic person is very different. Some autistic people need round the clock care, while others need just a few hours support each week and some people don’t need any at all.

Understanding of autism and support for many autistic people has improved in recent years but it’s still nowhere near good enough. I frequently hear awful stories of people struggling to get the support they need from healthcare services.

The Long Term Plan recognises many of these problems and offers a lot of good ideas about how to solve them. It’s not the finished article and it’ll take a long time for autistic people to see meaningful changes. But this doesn’t mean the plan isn’t significant. It’s an essential foundation to the health system we want to see – much in the same way that breeze blocks are an essential part of building any house and making sure it’s stable. It’s also the first time that autistic people’s needs have been so prominent in an NHS strategy like this.

So I think it’s really important that we recognise that progress is being made and that we work with – and challenge - NHS England and the Government to make sure the plans become a reality.

Making reasonable adjustments

For me, the most welcome part of the plan is the NHS’ commitment to making sure healthcare providers can make reasonable adjustments for autistic people. This could transform autistic people’s experiences of healthcare services.

There are a lot of things that can be difficult for autistic people visiting their GP or an NHS service, including noise (if they are hypersensitive - echoing corridors or high ceilings can be a nightmare), uncertainty (unexpected changes like an appointment running late can trigger extreme anxiety) or too much information (there’s not always enough time to process the huge amount of information and advice you’re given). For others, it can be incredibly difficult just to convey what’s wrong, in large part because they’re already feeling overwhelmed for the reasons I’ve listed above. As a result, many autistic people find health appointments scary and end up avoiding them altogether, which is a huge risk to their health – and is no doubt one of the reasons that autistic people on average have worse physical and mental health than the wider population.

These reasonable adjustments must be based on a good understanding of autism and I’m pleased to see the plan talk about the consultation that is coming soon on mandatory autism and learning disability training. Without that training, staff won’t know what changes to make.

I feel very fortunate to have a good and understanding GP surgery, with brilliant staff. They know I’m autistic and know about my history of mental health problems. They’re always patient and listen to me, never making assumptions - and they don’t make me feel bad when I’m feeling completely overwhelmed and need a same day appointment. These sound like small things but they make such a difference to my anxiety levels and mean I can access the support I need.

Flagging and piloting health checks

The Long Term Plan also includes commitments to trial a specific health check for autistic people and to introduce a ‘digital flag’ in patient records to help staff know when a patient has a learning disability or is on the autism spectrum. Both these moves are really positive, as they will help pick up on potential health problems earlier and encourage staff to consider if a patient is autistic and the reasonable adjustments they could make - like informing the ward staff about any sensory sensitivities or communication difficulties. However, the plan stops short of improving GP recording of autism, as recommended by NICE, which is something I’ve previously written about.

My tips for healthcare staff

Alongside the ideas in the plan, there are other simple things that healthcare staff and services could do to help autistic people:

  1. Create an autism champion- an autism champion is someone within a department or ward who oversees admissions of autistic people and makes sure that the department takes the needs of autistic people into account - and that any specialist provision is put in place. This is often someone who has a personal connection to – or an interest in – autism. Their job is to share their knowledge with colleagues and this then spreads learning as staff move around services.
  2. Think autism first- if a patient is autistic, ensure you understand what this means for them and how their autism could affect their care.
  3. Remember, it's ok not to know- not all NHS staff have to be an expert in autism. Ask your patient and their family (where appropriate) for information about autism.
  4. Be aware of My Hospital Passport / One page profiles- the National Autistic Society has developed a hospital passport to help autistic people who feel they need help communicating with staff in hospital. This is a document which can be downloaded free by an autistic person, their friend or family and filled out with brief details about their autism and support needs, so it can be given to professionals caring for them as a quick reference guide. Dimensions have also created One page profiles which are a set of questions and space for a photo (or drawing) with key information about the person.
  5. Offer a low arousal route- this just means drawing a route on a map of the service/hospital etc to show where the quietest way in and out will be for people who are sensitive to noise or general busyness. This sounds like a small thing but it can really transform the care received by some autistic people who can become completely overwhelmed by noisy or unpredictable environments.
  6. Make sure you have a quiet room- this is a small and uncluttered room where someone can sit and escape the often noisy or busy environment of a hospital or other service. This can be beneficial to many people, not just autistic people.
  7. Try to avoid jargon- speak clearly, avoid using jargon and, in some cases consider using symbols, to help communication – particularly for people who struggle with written communication. Leeds and York Partnership NHS Foundation Trust has a repository of free healthcare symbols. This can also benefit patients with learning disabilities, people who have trouble with reading and people for whom English is a second language. It’s important to remember that this can help you meet the Accessible Information Standard.
  8. Photo journeys/photo step by steps- this can be printed or put online to show how to get to where you need to go using photos and short text descriptions. You can also use this to show what happens in common procedures, like getting your blood taken. East Cheshire NHS Trust has some useful examples.

 

Robyn Steward is an autism consultant and also Autistic Ambassador for the National Autistic Society. Find out more about Robyn’s work on her website.

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