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'We feel 100% let down' - mum speaks of battle for support for autistic son

PUBLISHED: 19:00 18 October 2019

Signs of autism in older children can include finding it hard to make friends or preferring to be on their own and not seeming to understand what others are thinking or feeling Picture: GETTY IMAGES

Signs of autism in older children can include finding it hard to make friends or preferring to be on their own and not seeming to understand what others are thinking or feeling Picture: GETTY IMAGES

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A mum of an autistic boy has described how her family were left struggling to cope while they waited a year for support from services.

Stuart Richardson, Chief Operating Officer at Norfolk and Suffolk NHS Foundation Trust (NSFT) Picture: NSFTStuart Richardson, Chief Operating Officer at Norfolk and Suffolk NHS Foundation Trust (NSFT) Picture: NSFT

Toni Smith, from Felixstowe, mum to Teddy, 13, who was diagnosed with autism in January, wants to highlight the long wait from an initial referral to seeing someone from the youth autism diagnostic service, which is run by the NHS.

Available for young people aged 11-18, the target is to see them within 18 weeks of referral, but the average waiting time is currently 32 weeks (or seven months).

A spokesman for Norfolk and Suffolk NHS Foundation Trust said there are currently 73 young people on the waiting list and commissioners have said pilot programmes have just begun to speed up accessing support.

Mrs Smith, 45, a mum-of-three who has previously worked in children and young people's services, said it took 10 months from the referral being put in to being seen.

Andy Yacoub (CEO Healthwatch Suffolk). Picture: GREGG BROWNAndy Yacoub (CEO Healthwatch Suffolk). Picture: GREGG BROWN

She said the family had to fight to get the referral accepted - which took months - before even getting a diagnosis.

And without a diagnosis, she said they were unable to access support. They are now battling for help with Teddy's anxiety so he can return to school.

Mrs Smith said: "We feel 100% let down. I would like to see the waiting times for any of the services shortened. But I understand there are constraints. But what about the children who are waiting and their families?

"I have always thought you should be able to get support before a diagnosis - that would be a great help for families."

Waiting times for the youth autism diagnostic service should be 18 weeks, but are currently at 32 weeks Picture: GETTY IMAGESWaiting times for the youth autism diagnostic service should be 18 weeks, but are currently at 32 weeks Picture: GETTY IMAGES

Mrs Smith said last year she had to take unpaid leave and then gave up her job because of the demands at home.

After not being in school since year seven, Teddy now learns at home, but he would like to return to Felixstowe Academy, Mrs Smith said.

"You try and teach your children to be a bit more independent. They need to be adults who can cope and go to work and there's no reason why Teddy can't."

Describing the battle she had to get Teddy into school, Mrs Smith, who now works at Felixstowe caravan park, said she would get up about 5.30am to start the process of getting him out of bed.

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"It got to the point where I would physically dress him as he would go into panic about his day. And I then thought 'I can't continue to do this'."

What the NHS say about the waiting times

The youth autism diagnostic service is based in Haymills House, Station Road East, Stowmarket, and covers the area served by Ipswich and East Suffolk Clinical Commissioning Group (CCG) and West Suffolk CCG.

Stuart Richardson, Norfolk and Suffolk NHS Foundation Trust chief operating officer, said: "The average number of monthly referrals received by the youth autism diagnostic service has increased by almost 50% from 14.5 in 2017 to 26 so far in 2019.

"We are working alongside our commissioners to reduce waiting times and to review the current service in line with the wider Suffolk Mental Health and Emotional Wellbeing Transformation Plan."

A spokesman added that once families have been seen the feedback received was "mostly positive" and stressed in some parts of the country young people have to wait between two and three years for that first appointment.

Garry Joyce, associate director of Transformation: Children and Young People for the CCGs, said two pilot schemes, working with the voluntary sector, would mean everyone on the current waiting list would be able to access support "straight away".

He said this would help families deal with children with autistic tendencies without a diagnosis, adding some parents might then feel they don't need to pursue one.

Health watchdog says "more work must be done"

Andy Yacoub, chief Executive of watchdog Healthwatch Suffolk, said: "We are aware of the problems that young people and their families face, with support surrounding autism and other special education needs and disabilities being very limited across the county.

"In our recent report examining people's experiences of using services provided by the Norfolk and Suffolk NHS Foundation Trust, all of the comments that referred to access to neurodevelopmental support were negative, with these issues compounded by lengthy waiting lists and poor communication from organisations.

"More work must be done. As a partnership, we have always maintained that it is absolutely vital to shape services by utilising the views of people using them, and that all discussions and decisions are communicated clearly, effectively and with absolute transparency to avoid any potential confusion and controversy."

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