UK – NEAS launches new resource to support patients with learning disabilities

The North East Ambulance Service has launched a new resource to support patients with learning disabilities.

A new online resource is now available on the Trust’s website, giving people the information in an easy read format that will help them to choose which emergency service they require, be it  NHS111 or 999.

Public Health England has stated that 40% of people with a learning disability reported having difficulty using health services.  People with learning disabilities are two and a half times more likely to have health problems than other people and therefore many of the patients that staff provide aid to often have barriers to communication during triage and treatment. (Equal Treatment: Closing the Gap).

Engagement manager at the Trust, Mark Johns, explained why there was a need to develop information for different people who use the service.  He said, “We know from patient feedback and surveys that people with learning disabilities find it harder to access and communicate with our service.

Information about how to use our services should be readily available to all members of the public, including people with learning disabilities, and we wanted to make sure that we tailored the information so that it’s accessible to people who need it in a different format.”

The NEAS learning disability zone has been created to reduce barriers to communication for people with learning disabilities to optimise patient experience and quality of care.  The information is presented an illustrative form of what to do in an emergency, including a section of what to expect inside an ambulance with pictures and basic descriptions of the equipment in the vehicle.

A user led project group was set up with a community group which supports people with learning disabilities to understand the obstacles individuals face and to help design new guidance on how to access emergency assistance.

Stephen Mckay Guidepost day centre officer said, “We support a diverse group of individuals with a wide range of learning disabilities and it’s encouraging to see this work has taken into consideration the varied capacity and needs of these individuals and the end product speaks for itself. So many places create resources for people with learning disabilities without meaningful engagement with them.

“It’s great that the group have been so heavily involved in creating this zone and actually really listened to. NEAS has broken down the barriers that people with learning disabilities can face when it comes to accessing the right healthcare services and developed a resource we think will help support others to understand the services they offer.”

Mark continues “The project group explained their fears about being inside an ambulance and calling 999 so we’ve tried to allay their fears with more information about what happens once calling us and once on board an ambulance. We hope this new resource gives confidence to people when they come across and need our emergency services. For NEAS, it means that our call handlers will be aware of what to expect when arranging the appropriate help for the person in need, making the experience less stressful for all concerned.”

NEAS also arranged for the project group to meet a paramedic who showed them around the inside of an ambulance and encouraged them to experience sitting on the stretcher and wearing an oxygen mask, should it ever happen to them in the future.

Carol who was one of the participants in the project group said, “I was terrified of the mask, that’s why I asked to have a go.  Now I won’t be scared if I needed to ever use it in real life. I hope when people see my picture they won’t feel scared too. The North East Ambulance Service’s website is really good and I’m glad I got to tell the paramedics and other staff what I wanted to know.”

Paul, who was another participant in the project group said, “The new NEAS website page is really good and I really like that NEAS listened to me and I will show other people so they can learn how to get help too.”

You can find out more about the disability learning zone by following this link: /patient-info/learning-disability-zone.aspx

BC – RCMP training officers to understand autism

Advocates have long known people with Autism Spectrum Disorder (ASD) have regular exchanges with police. And now awareness training is helping some RCMP officers better recognize and help those with autism.

In 2017, Lunenburg County RCMP in Nova Scotia received a spike in autism-related calls. Many officers’ questions went to now-retired Cst. Rod Francis. He has first-hand experience with autism because his teenage son lives with the condition.

“I’m very familiar with ASD and how to deal with it,” says Francis, who in late 2017 helped organize ASD training sessions for colleagues.

He saw the benefit of those efforts months later at a local school, where a colleague helped an autistic teenager.

“He just wasn’t getting his own way and he was upset,” says Francis, who added the officer was calm, gave the teen lots of space and was able to get him to sit at his own desk, which helped diffuse the situation.

First step is awareness

The training was also sparked by a lack of autism awareness.

“A lot of the time, as police officers, when we get a call, the information we get is that it’s a 13-year-old at home out of control. We may not be aware that they have ASD. As a result, we’re going in there with a high-risk assessment that doesn’t help,” says Francis.

A 2017 study by the Centre for Addiction and Mental Health (CAMH) and York University found that while almost half of interactions with police were calming, nearly one-third had the opposite outcome.

Yona Lunsky, who has extensively studied autism and co-authored the study, says police and other first responders need to recognize the challenges involved.

“There are so many autisms,” says Lunsky, a senior CAMH scientist.

ASD is a lifelong, developmental disability that affects how those with autism communicate and relate to other people, and how they experience the world.

Lunsky says autism can, among other things, be severe or mild, it may be diagnosed very early on in life or it may not be diagnosed until adulthood. It may or may not be associated with an intellectual disability. As well, difficulties with social communication may be subtle or a person may not be able to verbally communicate at all.

Lunsky also notes autistic individuals are more likely to be victims of crime.

“So police have to be aware of that too and have the same sensitivities when supporting them,” she says.

Reaching out

In British Columbia’s Lower Mainland, RCMP S/Sgt. Major Stephen Blair Hurst has helped train hundreds of officers in ASD awareness with the support of the Pacific Autism Family Network.

“We discuss scenarios you may encounter and behaviours,” says Hurst, who describes a fictitious call for service involving a young man with ASD in a parkade who’s wearing a hoodie, carrying a backpack and looking into car windows.

He says when police arrive and identify themselves, the individual may ignore them. “The officers could interpret this as someone who may be attempting to break into vehicles or as a suspicious male who is avoiding contact with police,” he says.

But, he adds, the scene could also be a non-verbal male with ASD who has sensory issues.

“His communication style and ability may be one where he’s not comfortable making eye contact and he may be non-verbal,” says Hurst. “We don’t expect our members to make a diagnosis. But the more we know about ASD indicators and the behaviours, the better it’s going to be, and awareness is key.”

Lunsky, who holds a PhD in clinical psychology, says it’s essential police reach out to the autism community for solutions.

“It’s really important to get to know people to understand their autism and to know them when they’re not in crisis,” she says.

Lunsky says there’s always an opportunity for first responders to learn more about ASD.

“Every time people with autism have a bad experience, it affects how they deal with police the next time,” she says. “Even after there’s an encounter, police still have an opportunity to say: How can we do better? What support can we give you next time?”