It was only three years ago that News OnTheWight published their SEND Stories series, a number of features highlighting the devastating impact on many Isle of Wight families due to delays in Special Educational Needs or Disabilities (SEND) support for their children.
Now we learn that there are still almost 500 children and young people on the Isle of Wight waiting for an Attention Deficit Hyperactivity Disorder (ADHD) assessment, diagnosis or medication, which parents say is shattering the lives of children and young people.
New service commissioned
In September 2021, the Hampshire and Isle of Wight Integrated Care Board (known then as the Hampshire, Southampton and Isle of Wight Clinical Commissioning Group) announced they had commissioned Psicon to provide a new ADHD service on the Island.
The company had already been providing services on an interim basis from as far back as 2018, when more than 400 children were waiting for an Autism diagnosis.
“It’s a total, diabolical mess”
Parents now tell News OnTheWight that the situation is just as bad, with no movement on ADHD assessments for many months.
One parent told News OnTheWight,
“My son was referred in October 2021 and is still waiting for an assessment. Our MP, Bob Seely, hasn’t responded to constituents asking for his support. It’s a total, diabolical mess.”
Round two
The Isle of Wight parent says that this “is our second time caught up in Isle of Wight council mess” and that it’s exhausting.
“We were also caught up in the ASD mess and waited three years for a diagnosis for our child.”
“The council has fought me every single step of the way”
They have two children, both with special educational needs,
“I’ve also attended 11 tribunal hearings for my two children with Education, Health and Care (EHCP) plans and I’ve still got more hearings coming up just to get the right provision for them.
“The council has fought me every single step of the way.”
The parent told News OnTheWight that both their two children are without suitable school placements for September and accuse the Head of SEN of ignoring their emails.
Questions to those responsible
News OnTheWight put a series of questions to the Isle of Wight council ten days ago, and at time of publishing they’d still failed to provide answers.
We also put questions to Psicon and the ICB, both of whom took more than a week to provide their responses.
Pause on referrals
The Hampshire and Isle of Wight Integrated Care Board told News OnTheWight that Psicon will only be accepting referrals from certain groups such as those with complex mental health needs referred from the Child and Adolescent Mental Health Service (CAMHS) and blame the situation on high demand.
However, many parents also report long delays in getting assessments through CAMHS, another devastating situation for young people on the Island.
Psicon confirm that ADHD diagnostic assessments for all other children and young people will be “temporarily paused”.
The ICB spokesperson told News OnTheWight,
“Similar to many areas across England, we are experiencing significant demands for Attention Deficit Hyperactivity Disorder (ADHD) assessment and prescribing services which has led to increased waiting times.
“To ensure those who need the most urgent care receive their assessments and treatment in a timely manner, we’ve had to take the difficult decision to temporarily only accept referrals for children and young people who are under the Looked After Children’s Team, the Youth Offending Team or those with complex mental health needs referred from the Child and Adolescent Mental Health Service (CAMHS). We have written to all parents with children on the waiting list to update them on the situation. We will be keeping it under review and will update as things progress.
“We recognise the impact this has on families and we’re working hard with providers across the region to develop long term solutions to reduce waiting times and improve services for people. We have a robust system of triage in Hampshire and the Isle of Wight to prioritise people based on those in most urgent need as well as taking into account the length of time people have waited for an assessment.”
Psicon: An unavoidable increase in waiting times
News OnTheWight’s questions to Psicon ten days ago appeared to prompt them into writing to all parents on the waiting list this week, explaining the situation.
Dr Daniel Simmonds, Managing Director at Psicon told News OnTheWight,
“Whilst priority has been given to the safe management of children undergoing treatment with ADHD medication, diagnostic assessments have been taking place and 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.”
Lack of resources
News OnTheWight asked how the resources had been maximised and whether this related to more funding from the ICB or more staff. The spokesperson replied,
“The resource available to us has remained the same but the number of children on the caseload has increased, as has the number of new referrals to the service. Both Psicon and ICB have done their best to ensure the available resource is maximised and this has necessitated prioritising referrals as previously explained.
“The service is therefore limited by the resource available rather than the capacity to deliver the work.”
Why funding has not been increased?
This month there have been multiple Isle of Wight vacancies advertised for SEN casework officers and administrators.
News OnTheWight has asked the ICB why if “The service is limited by the resource available rather than the capacity to deliver the work” the funding to Psicon to help clear the backlog has not been increased. We’ll update once we hear back.
ICB: Keeping the situation under close review
A spokesperson for the ICB told News OnTheWight,
“Over the last 12–18 months, demand on the ADHD service has grown significantly and we have maximised the resources available to us across Hampshire and Isle of Wight at this time and invested a further £100,000 this year to support the pressure on the service.
“Acknowledging that this is both a national and regional issue, we’re working hard with providers across the region to develop long term solutions to reduce waiting times and improve services for people.
“We are keeping the situation under close review and will update parents and families as and when things change.”
Psicon: Ensuring those at highest risk receive urgent care
The spokesperson from Psicon says the change in who can be referred to the service has been taken “to ensure those who are at the highest risk and requiring urgent care receive their assessments in a timely manner”.
They added,
“Psicon will also continue to accept new referrals for children and young people with an existing ADHD diagnosis and require a medication review, for example, if they are new to the area.”
Those children who are currently receiving treatment for ADHD via Psicon will be unaffected.
Unpaid bills?
One parent said they’d been told by Psicon that the company “would not resuming due to the council refusing to pay the bill”.
News OnTheWight put this to Psicon, IWC and the ICB. The spokesperson from the ICB told News OnTheWight that it is they who commission the services (not the council) and they’re not aware of any issues with unpaid invoices.
Psicon and ICB: “Sincerely sympathetic to families affected”
Since being commissioned in September 2021, Psicon say they’ve “successfully ensured the continuity of care of over 1,000 children and young people previously treated by the Isle of Wight NHS Trust”.
Psicon and the ICB both say they are “sincerely sympathetic to families affected by this unavoidable situation”, and that they will “do all we can to support them and continue to monitor and review the status of the pathway”.
That doesn’t mean a great deal to the families with children and young people struggling day-in day-out, missing out on vital support and education.
Further information
The following are useful links for information and guidance that may provide some additional assistance to parents and carers.
- The IWC Local Offer Website provides a number of services, organisations, charities and networks that can offer support and guidance to families.
- The Isle of Wight mental and health and learning disability teams has a support Website.
- Young Minds also has information on ADHD.
- ADHD UK has a comprehensive site of information.
- ADHD Information Service can be found online.
Article edit
8.25am 27th Apr 2023 – Comment from ICB on resources added
