Mother’s ‘ridiculous’ wait for son’s special needs diagnosis

A MOTHER has told of her “ridiculous” wait for a special educational needs assessment for her child.

Emma Hawes Taylor’s 11-year-old son has been waiting for more than three years to be assessed for suspected ADHD and autism.

The former seamstress, who lives in Henley, said that it had been “frustrating” to be left without answers.

Last month, Henley MP Freddie van Mierlo wrote to the Buckinghamshire, Oxfordshire and Berkshire West Integrated Care Board, which is jointly responsible for services with the county council, to request an “urgent update” on the state of its ADHD services.

Mr van Mierlo called for more resources to be allocated to help speed up the diagnosis and treatment to prevent patients from feeling “stuck” in the system.

He pointed to the closure of the adult waiting list in February last year, due to “overwhelming demand”.

Ms Hawes Taylor said that while she was pleased to hear that the MP was pushing for updates she was disappointed by the lack of response given to parents. She said: “I’ve written to Freddie on a number of occasions about this as I’m sure many other families have and we need somebody to get answers because we don’t get much information.

“My son has been on the waiting list for nearly four years now, which is absolutely ridiculous.

“I get an annual email saying he is still on the waiting list and they say they are sorry but they never detail what they’re doing to try and address it.

“It will be a shock when I finally get the email to say ‘can your son come in on this date’, because I honestly can’t see it ever happening.”

Ms Hawes Taylor has taken the decision to home educate her son rather than to send him to a mainstream school without an education, health and care plan.

The plan is available to young people up to the age of 25 with additional needs to provide them with extra support, including at school.

She said: “It creates a two-tier system because then people say ‘Well, why don’t you go and get a private diagnosis?’ But it’s £2,000 and that’s a lot of money to a lot of people.”

Ms Hawes Taylor, who is autistic herself, said that having a diagnosis had been “life-changing”. She said: “I was diagnosed as an adult five years ago. When you have a diagnosis then you can tell people ‘I am autistic’, or ‘I am ADHD’, and ‘this is what I need’.

“People are not being given the tools that they need to advocate for themselves and their children if they can’t access assessment and diagnosis in a timely manner.”

In his letter to Dr Nick Broughton, chief executive of the care board, Mr van Mierlo said he was concerned about long waiting times for diagnosis and initiation of treatment for children and adults.

Mr van Mierlo said: “Many feel stuck in a system that doesn’t meet rising demand and leaves them without support at critical points in their lives.

“I know local NHS teams are working under pressure but people with ADHD in Oxfordshire need to know that real change is coming — and when.”

Mr van Mierlo acknowledged the integrated care board’s efforts to improve provision in response to rising demand and said he recognised the “complexity” of the situation but called for greater clarity on timelines and delivery.

He requested an update on the progress of the following initiatives:

l The agreement to fund a service for patients aged 18 to 25 to ensure continuity of ADHD medication during transition.

l The establishment of an ADHD transformation programme and the completion of workshops to inform a new service model.

l The development of an options appraisal and business case to be taken through the planning governance process and work to resolve the shared care issue.

A spokesman for the integrated care board said: “As commissioners, we acknowledge the challenges in ADHD services and we will respond in full to Mr van Mierlo’s questions and concerns.

“The demand for ADHD assessments and treatment in the UK has significantly increased in recent years. This rise is largely due to greater awareness and understanding of ADHD, leading more people to seek diagnoses.”