10 month wait over autism appointment

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Teddy Cooper, 10, from Welton
Teddy Cooper, 10, from Welton

A mum says she has waited nearly 10 months for a follow up appointment after her son was diagnosed with autism.

And Helen Cooper, of Welton, near Carlisle, says the fact that some families are waiting up to three years for a life-altering diagnosis is a "disgrace".

Mrs Cooper was speaking after an independent review into the diagnosis and management of children with autism was commissioned by Cumbria Partnership NHS Foundation Trust.

The report found that some premises where clinics are held are unsuitable for children, doctors are ill-equipped and the autism assessment has become "unwieldy".

Mrs Cooper's son, Teddy, 10, was diagnosed as being on the autistic spectrum in 2014.

But she says there have been delays in the formal processes to determine the scale of his condition.

She said: "We saw a doctor on December 18 and we only went back to see her in Workington yesterday to get the results. It's a disgrace.

"The problem is there isn't enough doctors.

"In January we were told he needed to see an occupational therapist and the wait was eight weeks. It's October now and Teddy still hasn't been seen.

"We have had no help and we have been left on our own to figure this out.

"I welcome this report and hope it will help other people but for us it has come too late.

"They need to get more doctors and trained specialists that understand autism."

Delays in Teddy's official diagnosis meant he was unable to go to a mainstream school.

He spent time at the Gillford Centre, a pupil referral unit in Upperby, before last month securing a place at Pennine Way School in Harraby.

Mrs Cooper said: "It was very difficult and hard for him to go to the Gillford Centre.

"He didn't have any friends and he just wanted to be a normal child.

"People who don't know about autism don't understand it. Sometimes Teddy will wear the same socks for a week.

"This week he has joined Caldbeck Young Farmers and the Pony Club. He is over the moon."

Cumbria Partnership NHS Foundation Trust commissioned the report, which it hopes to use to drive improvements into children's diagnosis and management.

It builds upon comments by parents and health professionals alike.

While it praised the commitment of professionals from all agencies and their excellent working relationships, it highlights the lack of faith that families now have in the system.

Review author Dr Karen Horridge, paediatric consultant in disability from Sunderland, said parents found the care pathway lacks transparency, is inconsistent and takes too long to reach a conclusion.

Recommendations for improvements include:

* Co-design the autism pathway and process with parents.

* Develop plans to improve education and awareness of all services that come into contact with children and young people in Cumbria.

* Agree an approach and develop plans to build multi-agency competency for all involved in the assessment, management and support of children and young people with autism spectrum conditions.

* Develop a robust mechanism for care planning and support for families at the point of diagnosis.

* Identify ways of strengthening partnership working with primary care to support those children and young people with autism spectrum conditions.

Janine Wigmore, area policy officer for the North of England at the National Autistic Society said: “The National Autistic Society has been working locally for several years to raise serious concerns about the poor autism diagnosis and post-diagnosis support service for children in Cumbria.

"This independent review is therefore very encouraging and demonstrates that Cumbria Partnership NHS Foundation Trust recognises that improving this service is an absolute priority.

“The report describes the current service as ‘grinding to its knees’, with children waiting up to three years for a diagnosis which is far too long and puts families under even more pressure.

"We agree that many of the changes won’t need extra resources, but the Trust and commissioners must be ready to invest if necessary to see through the recommended improvements to the assessment process, autism training and autism-friendly practice.

“Restoring families’ confidence in the service is, rightly, the report’s primary recommendation.

"Families have told us how these unacceptable delays have made an already difficult time for them and their children much worse.

"They’ll need to be confident that there are going to be real changes, so it’s vital that parent groups are involved in developing the new service as the report recommends.

“We look forward to working with local families and the Trust to help realise their ambition to transform the service into one of the best in the country.”

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Bubba   Ross , Brampton Sunday, 30 October, 2016 at 9:51AM
Springboard is inadequate for Carlisle. We waited 13 months for an assessment with our son and we would have waited more had we not got our councillor and MP involved. The receptionist's attitude and that of the centre manager was disgusting. In my opinion somewhere like that that adds to the stress of a family awaiting a diagnosis needs shut down and a new, bigger, more adequate, facilty With people who are employed to work there on a full time basis and not drafted in from around the county needs to be opened.
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Alison   Dean-norman , Carlisle Sunday, 30 October, 2016 at 8:51AM
It took 8 years to get a diagnosis of ADHD and tics and odd which finally stemmed from a 10 month wait for an appointment at springboard in Carlisle I had to write to the pct with a letter of complaint which resulted in him getting an appointment 2 month earlier than stated and a locum peadiatrition being brought in for 6 months my son seen that doctor who arranged all these tests in which he was diagnosed with the above conditions that was 18 months ago we finally got the results of the Matt assessment for autism in April where she said they thought he didn't have autism then on my drive home from the appointment she rang me up to after talking to me she thinks our son has a different form of autism called pda pathological demand avoidance and more forms would have to be sent out to us and school as different strategies would need to be put in place it's November tom the forms still haven't arrived here of school I have rang every week for 6 weeks and keep being told they are probably in the months of typing waiting to be done and sent out we now have an appointment next week probably due to my constant calls we are barely managing to keep our son in a mainstream school with the maximum 20 hours a week extra support and he's 14 now it's too little too late I have had our mp involved twice I managed to get our son to a specialist clinic in Cheshire for a 2 nd opinion in April which costs about £2000 a time they gave recommendations on his medication it is disgusting in 2016 that our children are being failed so appallingly in Cumbria something needs to change I wrote a letter to the MPs for education and health and our local mp delivered them for me and the response I received back was absolute rubbish about how things are Giong to change clearly nothing is changing my son has been failed and is still being failed by the system put in place to help him and many like him Alison dean-norman
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Burping   Herbert , Cockermouth Sunday, 30 October, 2016 at 8:34AM
Wll done NHS. Now you need to act on this report and not ignore it. Then you need to share your findings with Cumbria County Council and explain that they are also failing children and young people with Autism
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