10 month wait over autism appointment
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.”