March 29, 2019 9.29 am This story is over 68 months old

Parents call for ‘failing’ special needs diagnosis system to be scrapped

The number of referrals has dropped by 75%

Angry parents are calling for a council scheme to diagnose conditions like autism to be scrapped, after just one year.

Cora Leeson from Cleethorpes is part of the Special Educational Needs in North East Lincolnshire group. She said the Access Pathway put in place last April, is causing more problems than solutions.

Parents are taking their children to places as far away as Sheffield to get an earlier diagnoses, or overturn North East Lincolnshire Council’s decisions.

Due to this, she has launched a petition which has so far had more than 670 signatures.

She said: “We are finding very few parents have been referred for even a basic autism screenings since this pathway started.

“Very few parents have had a good run in this access pathway and we now have hundreds saying ‘we don’t want it’ and ‘until you change it or take it away we won’t be co-operating with you anymore’.

Campaigner Cora Leeson. Photo: Daniel Jaines.

“NELC has been running this pathway for nearly a year now and the volume of upset that it’s caused is so much we want it scrapped”.

Under the initiative, parents with children who may have special needs now go through NELC’s Children’s Services, along with other social services such as neglect or domestic abuse, rather than their GP.

Ms Leeson, whose private group offers advice to parents of special needs children, said families were unable to go directly from GP practices to pediatricians and the pathway even cut off access to support services such as Patient Advice Liaisons.

She said the “panel” only looks at paperwork before making a decision and doesn’t meet family members in person.

She added the service has seen a drop in referrals by more than 75%.

Mrs Leeson obtained figures from Freedom of Information requests to the council which show that from April until the end of December only 12 referrals were made for an autism assessment.

Under the previous pathway, between March 2017 to February 2018, there were 56 referrals with 18 diagnosed cases of ASC.

Ms Leeson’s own son Cole has autism. When he was diagnosed at 14, Ms Leeson says he had started to hear voices due to the stress he was under.

Now, at 17, he studies history, ancient history and geography at Franklin College.

She believes diagnoses needs to take place as soon as possible to help families tackle issues and get children, who can often be seen to be acting out, in control of their lives.

“It really helped my son turn a corner getting his diagnosis when he did,” she said.

“He had some extra interpersonal therapy which helped knit him back together.

“My son is not ashamed or embarrassed of what he is, we are champions in my house for autistic behaviours and have a good earthy sense of humour.

“People with autism have such strengths in areas that they often end up with them becoming forerunners in whatever field they choose.”

Ms Leeson said the link via GPs to community pediatricians needs to be restored and that more health professionals, along with other service providers such as youth or sports clubs, need to be involved to provide evidence.

The group is due to meet Grimsby MP Melanie Onn to outline their concerns on Friday, March 29.

Last September, the Care Quality Commission found “significant areas of weakness” on the disability and special educational needs services in North East Lincolnshire.

It picked up on the new pathway, saying it was “currently in disarray” and noting “unacceptable delays” for children needing diagnoses.

The council said it would continue to seek views from parents across a range of SEND services.

“As part of this we are currently working with HealthWatch as part of a continued process of understanding and ongoing development,” they said.


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