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'Outrageous': Families wait FOUR years to get diagnosis for autism

PUBLISHED: 16:51 10 November 2019 | UPDATED: 16:51 10 November 2019

The waiting list for an autism diagnosis in Norfolk is now between one and four years. Picture: Getty Images

The waiting list for an autism diagnosis in Norfolk is now between one and four years. Picture: Getty Images

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Desperate families are waiting up to four years to get a diagnosis for autism.

More than 400 families are waiting for an autism diagnosis in Norfolk. Picture: Getty ImagesMore than 400 families are waiting for an autism diagnosis in Norfolk. Picture: Getty Images

A report sent to Norfolk county councillors in October said the average waiting time for a diagnosis was 72 weeks, with the longest wait recorded as 208 weeks.

One family in North Walsham, who did not want to be identified, were told in July that their teenage daughter could have to wait up to three years.

Former North Norfolk MP Sir Norman Lamb raised the woman's case with the Norfolk Community Health and Care Trust (NCH&C) which is commissioned by the county council to run the autism service.

"For any health organisation to send out a letter saying there is a three-year wait when the target is 18 weeks is just extraordinary," he said.

Sir Norman Lamb raised the case of one constituent in the House of Commons. Picture: Jamie HoneywoodSir Norman Lamb raised the case of one constituent in the House of Commons. Picture: Jamie Honeywood

"She has been let down at every turn and there are families across Norfolk being let down like that. They are failing so many families."

Melanie Craig, chief officer of the NHS Clinical Commissioning Groups, said the waiting times were "unacceptable".

And Josie Spencer, chief executive of the NCH&C, said in her reply to Sir Norman that demand was "significantly" outstripping capacity.

She said they were discussing with the county council more funding to clear the waiting list.

Independent Norfolk county councillor Sandra Squire. Pic: Norfolk Independent Group.Independent Norfolk county councillor Sandra Squire. Pic: Norfolk Independent Group.

However NHS chiefs also said they were tackling the problem two years ago when the waiting list was up to two years.

There are around 5,000 adults in Norfolk with autism and at least 1,700 children. As of August 2019, another 440 people were waiting for a diagnosis.

Sir Norman said the teenager's case showed just why mental health services needed reform.

The teenager's parents first took her to her GP when she was around 13 but she was not referred for mental health support until she was 17.

Melanie Craig, chief officer of Norfolk's CCGs, said the waits were Melanie Craig, chief officer of Norfolk's CCGs, said the waits were "unacceptable". Photo: NHS

But just before she turned 18 she was told that therapy would stop and she would be transferred from children's to adult mental health services.

She then had to wait almost a year to get treatment again.

The 19-year old suffers with severe anxiety and an online health survey showed she was likely to be on the autistic spectrum.

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Her GP referred her to the NCH&C who then told her the wait could be at least three years.

"When the letter came through I felt completely helpless," she said. "It will be another three years of my life wasted. I want to be able to finish my education and go to university.

"I had my life planned but it just crashed in on itself."

Her dad was able to get some help through the Freemasons but he said they felt badly let down by the NHS.

"You just do the best you can as parents but we are out of our depth and need help. It has really debilitated her."

Her mum said: "It has been very hard and stressful."

Problems with autism services were last discussed by the NCH&C board in May 2019.

A report to the board by patient group Healthwatch Norfolk called for "vast improvements".

It said it had interviewed more than 100 families and said there was a lot of frustration about the quality of services families received.

Independent county councillor Sandra Squire, whose two sons aged 12 and nine have been diagnosed with autism, said: "Diagnosis times in Norfolk are horrendous and always have been. Sadly I believe it's actually getting worse."

She said it was "outrageous" that families were having to wait up to four years.

"The authorities have known about this for years. It is just not good enough," she said.

But Mrs Squire added that even after a diagnosis there could still be a long wait for any help.

"A bigger problem is that the diagnosis is pretty much useless as, even with one, getting any help and support is almost impossible," she said.

A spokesman for Norfolk health and social care services said: "We are addressing this issue with a number of initiatives.

"This is not about money, there are skills shortages in psychology and speech and language therapy nationwide which has made the situation challenging.

"The short-term plan to reduce waits include the NCH&C recruiting a new speech and language therapist a new psychology post, and new support worker posts.

"We are also working to provide autism awareness training for GPs alongside changes to processes, so that people can self-refer, instead of having to visit their GP."

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