A survey of autistic people and people with a learning disability in Newcastle found that almost half were unaware that they could ask for reasonable adjustments at their GP surgery.

The survey was carried out by Healthwatch Newcastle, an independent organisation which helps people have a say about social care and health services.

Even though 63% of people it questioned said they would like reasonable adjustments to access their GP surgery, only 34% had asked for them .. and only 14% had got them.

I am afraid of not being taken seriously about my health. This has already happened numerous times, and is always worse when GPs are aware of my diagnosis - survey response

Forty-four percent of the respondents didn’t know adjustments were available. Others said they would struggle to express their needs, couldn’t talk to strangers, or feared they wouldn’t be taken seriously.

The survey also found that:

  • 45% said GPS did not use language they understood.
  • Almost half said they were not comfortable in surgery waiting rooms because of bright lights, the lack of fresh air, and noise such as telephones and talking.
  • More than half were not comfortable in the consulting room – many wanted longer appointment times or somebody to accompany them.
  • Less than half said surgery staff understood them. Some said they were treated differently by staff once they knew they were autistic. Others were frustrated at having to repeat themselves to different GPs and get used to new people.

GPs seem shocked when I say I’m autistic because I don’t have a learning disability and I am able to communicate and understand what is occurring. They then usually go into ‘talking very slow’ mode and treating me as if I have no brains - survey response

Under the Equality Act (2010), public services have a duty to make reasonable adjustments to make sure people with disabilities are at a substantial disadvantage.

Those who did have reasonable adjustments in place were much happier with their GP surgery, feeling more understood and that they had time to talk.

The adjustments autistic people would like to see include:

  • Easy read and large text information, reminder letters or text messages, and permission to record the information discussed at appointments.
  • Being allowed to have someone with them in an appointment.
  • A choice of appointment types including telephone and face-to-face.
  • The ability to book appointments online rather than having to use a telephone.
  • Longer appointments so they could explain issues
  • Greater understanding from GPs about how autism interacts with other health conditions.
  • More relaxing waiting rooms without noise or crowds and with fresh air.

The waiting area is a NIGHTMARE for autistic people. The last time I was there there was a telly and a radio on, phones ringing, beeping noises, a tannoy service calling patient names, doors slamming, staff chatting and laughing quite boisterously and bright lighting. I almost left - survey response

Natasha Smith, Research and Engagement Manager of Healthwatch Newcastle, said: “Feedback highlighted to us that there is a real need for awareness raising around what reasonable adjustments are and how they can be requested.

“We believe this is of particular importance given the impact reasonable adjustments can have on the overall patient experience and whether individuals are able to access care in a timely manner and in a way that works for them.

“We were pleased to hear that GPs and the Integrated Care Board are committed to ensuring that autistic people and people with a learning disability are not disadvantaged and can access services easily.

“In our role as Healthwatch, we will continue to work with local services to help ensure the patients’ voice is reflected in the decisions made around services.”

You can read the report here: “Accessing and using GP services in Newcastle: Understanding the reasonable adjustments made for autistic people and people with a learning disability”.

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