Additional reporting by Simon Finlay, Local Democracy Reporter

Tens of thousands of people are waiting years to be diagnosed with autism and ADHD following a huge surge in demand for assessments.

Up to 13,000 children and 14,000 adults are waiting to be tested for neuro-divergent conditions across Kent and Medway, with queues of up to seven years anticipated.

Kent County Council (KCC) committee papers tell of a “rapid increase” in demand for autism and ADHD services, with referrals increasing 600% in the last two-and-a-half years to more than 31,000.

One mother from Ramsgate has turned to private healthcare to get her son the help he needs.

Sarah Penny, 37, needed to get a diagnosis for six-year-old Oliver so he could be admitted to a specialist school.

She says the system is “appalling” adding: “There are children at the bottom of this and there are families that are falling apart - it’s cruel and it destroys people’s lives.”

She suspected her son had ADHD since he was a toddler, but under the NHS framework a child has to be at least six to be diagnosed with the condition.

Then, on being told the waiting list would be four years, Sarah said: “It was devastating because we were in a state of crisis.

“His symptoms were profound so we knew we wanted to have a conversation about medication to make his life a little easier and make his brain a little calmer - the thought of him waiting until then was inconceivable.

“When you have a child with SEN and if you have one with behavioural needs like I do, you get made to feel like a bad parent.

“You get looked down on, you get offered parenting classes left, right and centre, but, I can’t out-parent ADHD.”

With Oliver already experiencing difficulties, both at nursery and now in his reception class at a mainstream school, the family spent more than £2,000 to get him diagnosed and reviewed by private Canterbury-based specialists, Psicon.

Shortly after turning six this year, he was found to have ADHD. A separate assessment, at Greenbanks in Thanet, found he also has autism.

While Child and Adolescent Mental Health Services (CAMHS) accepts his diagnosis, he is still on a waiting list for his NHS prescriptions and appointments.

NHS Kent and Medway commissions post-diagnostic services from Kent Community Health NHS Foundation Trust (KCHFT) which in turn subcontracts them to companies such as Psicon and Sinclair Strong.

According to Kent and Medway Integrated Care System (ICS), over the last few years demand for autism and ADHD testing has risen at a speed services simply cannot keep up with.

There are more than 9,000 children and young people on a waiting list for an autism assessment, and more than 4,000 for an ADHD one, meaning they could be waiting between three to four years.

And for adults, the queue is even longer.

There are nearly 12,000 in line for an ADHD evaluation, with the period from referral to testing expected to be up to seven years.

A further 2,100 adults are waiting up to three years for autism assessments.

According to Kent and Medway ICS, these figures are a result of widespread awareness of the conditions and the impact of Covid-19 on people’s mental health.

Cllr Richard Streatfeild (Lib Dem), a member of KCC’s health overview and scrutiny committee, said better diagnosis had led to the massive demand for treatment.

He said: “For example, someone may have once been treated for anxiety alone but now they are taking a deeper look at the root causes.

“The diagnoses have got so much better, particularly for women and girls. The headline figure of 600% is incredible.”

Priya Bridge from Dartford has two sons, both of which have special educational needs.

Her eldest, Niam, was diagnosed with autism before the pandemic – he was seen and diagnosed swiftly at three. But, the route to get his sibling Noah assessed has proved more difficult.

“My youngest son was referred by the health visitor at the age of two but we went privately because months went on and we still hadn’t even received a paediatrician appointment, let alone been put on a waiting list.”

They also used Psicon and paid nearly £2,000 for a two-hour autism assessment for their now four-year-old.

Priya said: “The minute he was diagnosed, the paediatrician service thought they didn’t have to see him.

“They were about to discharge him and I said ‘hang on, I know he has been diagnosed with autism but he has other issues which haven’t been addressed yet’.

“It’s like they discharge you straight away from the service so you don’t have any fallback.”

Now Niam is older, his parents are looking to get him assessed for ADHD after exhibiting symptoms since he was younger.

But, instead of going down the private route, they will be opting for the Right to Choose option after finding out about the pathway from other parents.

This means if a GP makes a referral, parents have a legal right to choose the provider they would like to use.

This includes private services if they are available.

Psicon offers this option and if a parent follows this route, their child can be tested for autism for ADHD within six to nine months.

But Kent and Medway ICS acknowledged some children and adults are waiting many years for an assessment and not getting the support they need.

It said: “We therefore need to prioritise people with the greatest need when offering appointments.”

“Demand coupled with workforce pressures and NHS financial constraints has placed significant demand on the service…”

But the ICS explained that getting a diagnosis is not the only route to support, and many people will not need an assessment if they can access appropriate help at the right time.

It added: “We are looking at new ways of working together and are creating a central place online for the resources available.

“New ways of working with GP surgeries are being developed and we are rolling out projects in schools which will help families to access support in the community.

“If successful, these projects will be scaled up to support people across Kent and Medway.

“We are also testing new ways of supporting adults who are on the waiting list for an assessment. This means they get support that meets their needs, rather than waiting for a diagnosis.”

The ICB has undertaken a review into the system to discover how and why patients are referred and to support them while they are on the waiting list.

More than 4,100 of those waiting use an app which provides help and stages workshops but the KMICB notes this alone cannot reduce short-term demand.

KCC papers note that while demand for adult autism and ADHD assessments was expected to grow between 2019 -2021, the increase seen from 2022 was “unexpected and accelerated by the pandemic”.

The documents state: “This has resulted in significant waiting times within the current commissioned pathway for ADHD assessment (up to seven years) and medication reviews (up to two years).

“National prescribing data shows that there has been a significant growth between 2019/20 and 2022/23 for adult prescriptions with the 25-44 age groups seeing the biggest increases in patients being prescribed ADHD medication, with a 146% increase in the 30-34 age group.

“This demand coupled with workforce pressures and NHS financial constraints has placed significant demand on the service.”