The heartbroken mum son died with ADHD investing her savings to stop other children getting diagnosis too late

A mum who believes her son took his own life because he was diagnosed with ADHD too late in life is investing £30,000 of her own money into trying to make sure it never happens to any child in Gloucestershire again.

Jane Roberts is paying for an ambitious project to train 500 teachers and 500 parents in her home town of Stroud about conditions such as attention deficit hyperactivity disorder so more children can get help at a young age.

And she is doing so because she believes son Ben Brimley would be alive today if the disorder had been picked up when his primary school teacher first sent him to be assessed when he was six years old.

Read more: Mum tells of ‘heart-breaking’ loss after her one-day-old baby died

By the time her once happy, gregarious child was diagnosed at the age of 17 the damage had already been done and Jane found Ben dead in his bedroom at 7am two days after Christmas 2020, she says.

Next to him was a devastating note that she hopes no other parent will have to read. It said “I am long past saving and will be mostly a burden to you as long as I live”.

“It’s the money I was going to use to help Ben buy his first house,” explained the 66-year-old retired businesswoman when asked about why she is personally funding a project that could eventually be spread across the whole county.

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She added: “I can’t do that for Ben now but I can fund something that hopefully means other children will not have to suffer in the same way he did.

“I want it to make a difference. I want to stop this happening to another child. I don’t want it to happen to another family.

“There are a lot of children out there in Gloucestershire with undiagnosed ADHD and it will be worth it if I hear some little Johnny or Lucy is now getting the support they need to thrive.”

The ADHD Foundation Neurodiversity Charity umbrella project

Hundreds of colourful umbrellas have been put up in the town centre to mark the project that will help teachers and parents learn skills they need to help children in the town and 25 schools are taking part in the awareness campaign.

She hopes by training 500 teachers and 500 parents to spot children with neurodiversity, an umbrella term that includes dyslexia, dyspraxia, dyscalculia, Tourette’s Syndrome, ADHD and autism, Stroud will become the first of many towns where people have the skills to stop children falling through the net.

Jane says she was actually relieved when originally told Ben did not have ADHD after a primary school teacher referred him to a psychologist at the age of six and she worked with him to overcome the issues he was having in class.

“On reflection the school worked around him so in primary school he was fine,” she said.

“But it was very different when he started secondary school. He obviously struggled but he always pretended he did not care or didn’t have any homework.

“He wasn’t a disruptive or naughty child so it wasn’t picked up and he did a lot of covering up. The perception was Ben was lazy and not working hard enough.

“But we realised something was seriously wrong because although he always said he didn’t care, he was gutted when he did not do better in his GCSEs.”

Ben Brimley as a happy young boy

His parents went to the GP and after waiting months to see an NHS doctor they paid for Ben to be tested privately.

But by the time he was diagnosed with ADHD at the age of 17 there had been a lot of psychological damage done which had set him on the path to mental illness said Jane who has since found out such conditions can lead to a devastating loss of confidence.

Ben moved from Marling School to Cirencester Sixth Form College to do A Levels but struggled with the side effects of the medication he was prescribed and ended up dropping out.

Because of his experiences he was mistrustful of those who tried to help and turned to cannabis, then ecstasy and ketamine.

They later found out that the way he blamed himself and magnified everything that went wrong is a common trait for children with ADHD, as is drug and alcohol misuse in later life.

Ben started working 70 hour weeks in factories to save up to go travelling but ended up exhausted and depressed and his parents found out he had started using heroin.

Ben Brimley in his school uniform

Following a mental breakdown and attempted suicide there were two spells in hospital but his parents believe the antipsychotics he was prescribed did not address the underlying problem of his ADHD.

When he returned to Stroud from Devon in early 2020 he seemed settled because he had a flat, friends and his first girlfriend, but lockdown put an end to the gardening work and he moved back in with his parents last August.

They had their ups and downs but enjoyed a lovely Christmas making lunch, watching films and playing charades so Jane thought he had turned a corner and it would be like old times again.

Sadly it wasn’t to be and they are convinced that if he had been diagnosed aged seven his life would have followed a different path and would not have ended with her finding her precious son dead at the age of 30 a few days later, on December 27, 2020.

They have since found out that two out of every five neurodiverse children leave school at 16 without a diagnosis and around half struggle with drugs or alcohol.

Jane is hoping to change those statistics for the children of Stroud by training teachers and parents how to recognise the signs and give the pupils the help they need, even if they have to wait for a formal diagnosis, so they do not become overwhelmed at a young age.

She says little things like checking children have their homework written down correctly, something ADHD children like Ben can struggle with, can make the difference between success and failure in school.

Many children like Ben are not diagnosed because they are predominantly inattentive rather than hyperactive so they are not overly disruptive but give the impression they are being difficult and uncooperative.

Jane says people can wait up to five years for an NHS diagnosis and everyone can afford private testing which costs between around £700 to £1,200.

Ben Brimley as a teenager

“But even without a diagnosis, support from parents and teachers can make an enormous difference,” she said.

“In my opinion people with ADHD need life coaching and therapy so they don’t get to the place Ben got to, but sadly it’s not available on the NHS.”

Tony Lloyd, chief executive of the ADHD Foundation, said: Through this important education project more parents and teachers will be better equipped to support our neurodiverse children and young people.

“And through the inclusion of our Umbrella Project across the city, we can celebrate all the strengths and abilities of neurodiverse people.

ADHD Foundation Neurodiversity Charity is actively working to change how the world views neurodiversity. It is not a liability but an asset, and it is my hope that the Stroud Neurodiversity Project is yet another step forward in shifting this perception.”

What is Jane’s project?

The project consists of three main strands all free to participants:

1. An opportunity for 25 schools to take part in the Neurodiversity awareness raising and education, with some umbrellas of their own and materials to provide presentations and information to children and parents. It seeks to both highlight the issues and celebrate the positive aspects of neurodiversity, such as creativity and imagination. The contact for the project is lucy.cashman@adhdfoundation.org.uk

2. Live web based training sessions for 500 teachers on how to recognise and support ADHD pupils. For teachers the contact is training manager Colin Foley, email: colin.foley@adhdfoundation.org.uk

3. Live web based training for 500 parents on how to support children with ADHD. This is open to parents of children with and without a diagnosis. Anyone who wants to book onto the parents and carers webinars can contact ADHD foundations family services coordinator Lisa Rudge: lisa.rudge@adhdfoundation.org.uk.

Jane thanked the authorities in the county for backing the project and said: “It is my fervent hope that the Stroud Neurodiversity Project will expand across Gloucestershire in 2022 so we can all recognise the many struggling children with neurodiversities in our schools and start to celebrate and nurture the incredible ability, talent, and contribution that those 1 in 5 neurodiverse individuals can make to our lives – to our families, to our places of work, to our communities and to our economy.”

What the authorities say:

Gloucestershire Health and Care NHS Foundation Trust, Gloucestershire Hospitals NHS Foundation Trust and NHS Gloucestershire Clinical Commissioning Group issued a joint statement.

“While we cannot comment on individual cases, we sympathise with the family for the loss of their son.

“Gloucestershire Hospitals NHS Foundation Trust provides a community paediatric service which assesses primary school aged children for ADHD.

“For older children, the Child and Adolescent Mental Health Service (CAMHS) provided by Gloucestershire Health and Care NHS Foundation Trust includes treatment and support for neurodiversity issues including ADHD.

“CAMHS accepts referrals from schools, GPs and other health professionals. Waiting times are currently around 10 months, but the team is working hard to see patients as quickly as possible and to offer ongoing support to patients and families. This includes escalating appointments if appropriate, for example if symptoms worsen while a young person is waiting to be seen.

“A review of ADHD services is being undertaken this year by clinical commissioners together with local stakeholders. This will include listening to the experiences of service users to help inform future developments, and we would welcome further conversations with the family.”

Are you affected by any issues raised by this article?

Talk to someone.

There are useful helplines and websites available now.

Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org .

Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.

PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults.

Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information. http://www.depressionalliance.org/

Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts. Bullying UK is a website for both children and adults affected by bullying. http://studentsagainstdepression.org/

The Sanctuary (0300 003 7029) operates a 24-hour service available every day of the year, for people who are struggling to cope – experiencing depression, anxiety, panic attacks or in crisis.

Suicide Crisis have centres are open to people who live in Gloucestershire and provide face to face support.

You can contact them on 07975 974455 if you are in crisis between 9am and 10pm every day and is the number for clients making contact with us for the first time. There is also access to support and help outside these hours.