Children still being let down by Shropshire's autism services, parents' groups claim

Representatives of parent and carer groups have voiced concerns that barriers to getting the right diagnosis and support for their children have not been broken down by a new provider, which promised to turn things around when it was contracted three years ago.

BeeU, the county’s emotional health and wellbeing service for young people up to the age of 25, has been running since 2017 and is delivered by Midlands Partnership NHS Foundation Trust (MPFT).

Cathy Riley, managing director of Shropshire, Telford and Wrekin Care Group, part of MPFT, told a meeting of the county’s joint health overview and scrutiny committee that improvements had been made through employing specialist therapists and creating a dedicated learning disabilities team and neurodevelopmental team.

The committee heard that the waiting list for the ADHD pathway had been cut from over 100 to 29 but there was still a considerable waiting list for people with autism spectrum disorder (ASD).

Ms Riley said when the service was first commissioned there was a “lack of clarity” over the ASD “diagnostic pathway.”

She said this had been raised with the Shropshire and Telford Clinical Commissioning Groups (CCGs), which had agreed in August this year to fund an ASD diagnostic service, and recruitment was now underway.

Anger

Jayne Stevens, co-ordinator of PODS (Parents Opening Doors) forum, said: “It sounds great on paper. But we can’t say we have seen any improvements.

“We have been to many meetings where we have been told, ‘we are dealing with this, we are doing this, we are sorting this, we are getting down this waiting list’.

“And you are telling me that you are only just putting staff in place to make it better from now.

“You told us that 12 months ago, and you told us that two years ago. I am really angry and upset for the parents that we are not moving this forward.

“We might now have a diagnostic process but what happens after diagnosis for these families who are just crying out for some support?

“We have got families being passed around like hot potatoes.”

Ms Stevens said that newly-created emotional wellbeing panels set up with schools had “caused an even longer waiting list for families who have not got a good relationship with schools”.

Councillor Kelly Middleton said that as a parent she had seen first hand the barriers families faced when trying to seek a diagnosis for a young person.

She added: “I hear this a lot from really frustrated parents.

“So I’m not surprised the waiting list has gone down because nobody is being put on it.”

Apology

Zara Bowden, chair of Shropshire Parent and Carer Council (PACC), said: “I am so frustrated in hearing about how it has taken you three years to get to the point where you are recruiting and feeling like you are in a position, as an organisation, to start making headway on what you were commissioned to deliver three years ago.”

Ms Riley said it had been a struggle for the trust because ASD diagnostic services “was not clearly commissioned or resourced from the start”.

She said: “These stories are appalling. I can only apologise on behalf of the system, but it is not because we had that resource and were not doing anything with it or using it anywhere else.

“This is an historic issue in our system that is now resolved but it has been resolved too late for lots of people.”

She said engagement with parent support groups was the “next stage”.

But Ms Bowden said this should have been done much earlier in the process, adding: “I am failing to understand how it has got to this point before you want to start working with parents in service development.

“We want to help you to help our community better.”

'Failing diagnosis service'

Further concerns were raised around Shropshire’s below-average level of ASD diagnoses.

Sarah Thomas, PAC participation coordinator, said: “There seems to be a culture of anti-diagnosis in the MPFT, certainly around the neurodevelopmental pathway.

“We know that in Shropshire we have one of the highest exclusion rates in schools and we have a below national rate of autism.

“We don’t believe that’s because we are doing something amazing in Shropshire that means we don’t have as many autistic young people in the area as others.

“What we do know is that we have had a failing diagnosis service for an excessive period of time and that is leading to significant issues in our schools.

“If a young person is not diagnosed they can’t benefit from the Equality Act, they can’t access the legal protections that are given to them through a diagnosis.”

Ms Bowden said the trust’s aim to cut its ASD waiting list to zero should be “easy to achieve” because “young people are being batted out of the referral system”.

Committee chairman Councillor Derek White said the committee would convene a workshop with parent/carer representatives to go over the issues identified.

Ms Riley added: “I do accept the fact that we haven’t engaged sufficiently but as we have heard there is a significant degree of fire fighting that we have done over the last few years.

“There are improvements in the service that are visible. I think the ASD bit is a bit that that has still got to drastically improve and we are aware of that, but now that we have got the funding we can start to do it.

“In terms of engagement with parents, that was definitely on our agenda before this meeting and it is even more so now, listening to people’s comments on that.

“That is something that I can guarantee we will take forward."