We are disgusted and disappointed, say Isle of Wight families awaiting an ADHD diagnosis but now told those on the NHS have been indefinitely postponed.

Only children referred by the Isle of Wight's Child and Adolescent Mental Health Service (CAMHS), the Looked After Children team or the Youth Offending team will be able to access ADHD assessments.

The latest blow for parents and carers comes in a long-running saga which has seen huge delays and waiting times.

One angry dad told the Isle of Wight County Press his child is soon due to start secondary school, after being referred to the company tasked with diagnosing children, Psicon, eight months ago.

There are four stages to the process, he told us.

"There is referral, the questionnaire, assessment and diagnosis.

"We still haven’t even received the questionnaire.

"The service is not fit for purpose. It’s disgraceful so many families are being let down."

A mum said her five-year-old son has been on the waiting list for more than a year, with suspected autism and ADHD.

She said: "His referral for assessment was due to be sent off in a few weeks.

"He desperately needs help.

"The school and professionals are struggling and he spends most his time excluded. Something has to be done."

An Islander who grew up with ADHD has called his experience 'confusing'.

He said: "People assume that you're hyper. My brain never fully switched off.

"It led to me not sleeping properly - waking at 6am every day.

"I was seen as a naughty child and could never concentrate on just one thing. The worst part was having no fear of danger.

"I had no support and was constantly being sent to the head.

"Getting the right medication is a must and you don't get that without the proper diagnosis." 

Psicon and the ICB (which oversees health services across the Isle of Wight and in  Hampshire and Southampton) say they have sympathy for families caught up in the delays, but have called it 'unavoidable.'

One Isle of Wight headteacher called it a perfect storm for children in mainstream schools with complex needs. 

They said: "There is lack of provision and support, compounded by plans to close the Island Learning Centre to primary-aged children. 

"Budgets are tight and inevitably it is teaching assistants who are hardest hit by redundancy and schools are also unable to replace them when they leave. 

"These are the people that work closest with the children with complex needs and diagnoses.

"The ADHD waiting list was already two years long and without the right diagnosis in place, it is difficult to ensure the right support is in place.

"In turn may mean the children are not reaching their full potential, academically or socially." 

A long-awaited statement from Psicon said a decision to restrict new appointments will ensure those at the highest risk and requiring urgent care are seen in a timely manner.

In 2021, it was commissioned to provide ADHD diagnostic assessments and treatment for Isle of Wight children aged between six and 18. 

Since then, it has taken over the care of more than 1,000 young people - those previously treated by the Isle of Wight NHS Trust.   

While it will continue to accept new referrals for those with an existing ADHD diagnosis, families on the waiting list have been told no appointments are likely to be available any time soon.

The ICB insists it is working hard to develop a long term solution and said 'a further' £100,000 has been invested in the service, this year.

Parents contacting the County Press said private appointments are available faster, but cost between hundreds and thousands of pounds.

In February, we heard from another family 'stuck in limbo' a year after a referral for autism, which they say is linked to an ADHD assessment.

Their son is being home-schooled, while they wait.

Psicon MD, Dr Daniel Simmonds, said: "Our aim has always been to ensure waiting times are kept to a minimum. This was initially very successful and waiting times were reduced to less than six months but, as the service has become more established, demand has grown dramatically.

"Despite maximising the resources available to us, this has resulted in an unavoidable increase in waiting times for diagnostic assessments."  

On Friday, April 21 representatives from nine organisations met MP, Bob Seely.

He said: "I was keen to get service commissioners and advocates of service users all in a room together to see what could be done to help families of neurodiverse children. 

"We focused on what could practically be done in the short term to speed up support for children in schools with, or without, a diagnosis.

"The group will continue this work and I will be supporting them."

Mr Seely said he would write to NHS England to ask for additional funding for training programmes for teachers and would work with Hampshire education officers, to look at ways to encourage more schools to sign up for training.

Last month, the government granted funding for a new Isle of Wight-based SEND free school and more places could be opened up at Medina House school, but full support relies on a diagnosis and a wait for appointments to reopen.