Date: 20 May 2019
A Berkshire father who has been living with undiagnosed autism for most of his life wants to give something back and help others like him by taking part in NHS research.
Richard Lelliott said his diagnosis two years ago aged 47 helped him understand the difficulties he has had throughout his life.
Mr Lelliott, 49, is now taking part in studies into the experiences of people with autism and mental illness, which he was told about by staff at Reading’s Prospect Park Hospital.
The Newbury resident spoke ahead of today’s International Clinical Trials Day (20 May), an annual drive to encourage the public to take part in health research. This will be marked by public information events across Berkshire throughout the week.
This comes as a survey of 412 NHS research participants in Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire found that 94 percent had a good experience of taking part and 92 percent would volunteer for another study.
Autism is a lifelong condition that affects how people interact with others. Most people with the condition see, hear and experience the world differently to those without it. At least one percent of adults have autism, however there has been little research into this and how their lives can be improved.
Mr Lelliott said: “When making plans with people without autism, they’re very vague: we’ll do this and that. To an autistic person, we’re finite, we’ve got one chain of thought and that’s it.
“Being out gives you a lot of sensory overload, you end up going out and doing what you need to do before going back home and withdrawing yourself, like you’re living in a trench.
“When I’m anxious, or get upset about other problems like the car breaking down or the house being a mess, I get into a lot of stress and it turns into this voice which disrails me, telling me I’m evil or bad.
“It’s like a constant chattering as well. It’s not clear all the time, like when you’re in a crowded room and lots of people are talking around you.”
Mr Lelliott also has complex post-traumatic stress disorder (PTSD), an anxiety disorder caused by repeatedly experiencing stressful, frightening or distressing events.
He said: “Hearing voices is part of my trauma, which I have come to understand. For many years it was thought it was exclusively something else, so it is important to be involved with trials, as everybody hearing voices can be different.”
Mr Lelliott, who said he had been diagnosed with psychosis for more than 30 years, was diagnosed with autism during his four-month stay at the hospital’s inpatients unit in 2017.
The father-of-one, who learned of health research while in hospital, said: “I ended up being taken into hospital because I’d had a nervous breakdown and I needed help. I’ve been through many years of misdiagnosis and I think it’s quite good to be involved in research for that reason. There wasn’t the same understanding of mental health at the time.
“Understanding and knowing how to respond to the voices is giving me a whole new lease of life. It gives me a chance to stabilise myself rather than being reliant on medication. Without my care co-ordinator, who is trained in autism and has guided me in the right direction for self care, I likely would not have survived.”
Mr Lelliott left his psychiatric healthcare assistant job four years ago and hopes to return to work soon.
He took part in three questionnaire studies - supported by the National Institute for Health Research (NIHR) - during a visit from a researcher at Berkshire Healthcare NHS Foundation Trust in December.
The first is looking at the experiences of adults with autism such as their diagnosis, physical and mental health, social support and lifestyle choices to improve services.
The Adult Autism Spectrum Cohort-UK, led by Newcastle University with funding from charity Austica, will recruit 500 people with autism and 500 relatives and carers from across the UK.
The other two studies are looking into mental illness. The second is about how people who hear voices respond to them and how they interact with other people.
Hearing voices is the most common type of hallucination in people with mental health conditions. The voices can be critical, complimentary or neutral and sometimes make commands or engage the person in conversation. The experience is usually distressing, but psychologists believe that by responding to the voices, people can get used to them.
The Assertive Relating to Voices (AppRoVe) study - led by the University of Sussex with funding from the Economic and Social Research Council (ESRC) - is trialling questionnaires with people who have been hearing voices for more than six months.
It is hoped these will be introduced to standard NHS care to help measure whether therapies to help people respond more assertively to distressing voices are working.
The third study, CAP MEM, is looking at why people with mental health and neurological disorders experience memory problems. People with and without mental illnesses are invited to take part, to compare the two. It is led by Newcastle University and Northumberland, Tyne and Wear NHS Foundation Trust and funded by Lundbeck Ltd.
Emma Donaldson, Clinical Studies Officer for Berkshire Healthcare NHS Foundation Trust, said: “Adults on the autism spectrum share certain difficulties, but the diagnosis will affect them in different ways. It is important for us to carry out research to determine if we can improve the services that we offer and in turn potentially improve their lives.
“Mental health studies like CAP-MEM and AppRoVe also provide us with more knowledge and information that could lead researchers and clinicians to develop better therapies and treatments.”
The studies are open to recruitment in Berkshire. Call 0118 3785700 or email firstname.lastname@example.org for more information.
Figures released today show 870,250 people took part in 6,106 NIHR-backed research studies across England in 2018/19, up from 725,333 people in 5,804 studies in 2017/18.
Patients are encouraged to ask their doctor about research opportunities and search for studies seeking volunteers at www.bepartofresearch.uk.