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One Bristol mum who set up a support group for parents of children with Special Educational Needs and Disabilities (SEND) found that many parents she met were traumatised by the way they were treated by professionals. Poppy Villierezz who co-founded the Bristol-based non-profit Murmuration Community Therapy two years ago told Bristol Live that parents were often not believed or were blamed for their child’s disability.

The community worker had initially set up the group to support parents who were suffering from the isolation of having a child that was different. She was surprised to discover that the difficult emotions parents were bringing to the group came from the way they were treated by SEND professionals was to support parents and children.

In response, Poppy contacted the council and explained that SEND professionals need to respond more empathetically towards parents. Murmuration Community Therapy was then given funding from the council to consult Bristol SEND parents and produce a training film for council workers.

One parent in the video produced by the group explains how she was made to feel crazy when explaining her son’s disability to the GP who didn’t believe her. Others who had attended the therapy sessions spoke about being blamed for their child’s undiagnosed invisible disability and were put on parenting courses to manage their child’s behaviour better.

Some were recommended therapy and viewed as hysterical and needing mental health support. For Poppy, the mental health problems experienced by the parents were a direct result of their negative experiences with services. In a survey she conducted with Bristol SEND parents, she found the majority felt they were not listened to by professionals.

A spokesperson for Bristol city council said: “Our performance data and feedback from many families demonstrate that we have made significant progress across all areas of our special educational needs and disability (SEND) provision since 2019. This is an area that has been impacted by COVID-19, staff shortages and increased demand in the system. You can read the council's statement in full below.

Poppy said: “These parents who’ve had that experience are living with trauma because they lose trust in their own voice. It’s like being gaslit, they are seeing stuff and everyone else is saying ‘no it’s your fault’ or it’s not even happening at all.

“These poor parents end up going on these courses being desperate and getting to this point where they feel that it’s all their fault when actually their child just requires different support and a different environment at school. It’s such a shocking phenomenon going on.

“As much as most of these professionals are trying their best, they’re not paid enough, they don’t have enough people on their team and they’re just stretched to the limit. The majority of what people bring to our groups is the trauma they’ve had with professionals, the way they’ve been treated, the amount they’ve been let down by services and the feeling of not being believed.”

“People who are wired differently are not always welcomed with open arms by the wider society. Yes we’ve made progress in terms of legislation but culturally and socially, we’re still in the dark ages when it comes to truly embracing disability and diversity."

Poppy's own experience of being the parent of a child with a disability had prompted her to set up her own group. She co-founded the Bristol-based Community Interest company with Naomi Bonger who is a drama therapist from her home in Easton.

They have now set up 25 support groups across Bristol which have mostly been online due to the pandemic but they are now beginning to do more in person groups. Parents participate in eight weeks of free, Nurture Groups and are then supported to continue meeting independently.

The challenge of school

After two years of talking to almost 200 parents across Bristol, Poppy discovered that education was a big challenge for children, especially those with invisible disabilities. She encountered many parents of autistic children who reported their child couldn't or wouldn't go to school.

Poppy said: “Then there’s a whole other challenge that parents are facing once their children reach school age. Even though there are disability inclusive laws there isn’t enough funding for institutions to be able to follow them so it’s a ridiculous situation where it’s impossible for the people at the front line to do what they're meant to do.

“The people that come to our groups regularly share that their child’s unable to come to school because the school won’t or can’t make the provisions to make it possible for them. What they should be considering is that school is making them mentally unwell to the point where they can’t bear to come in.

“I know someone who’s had their child out of school for two years. Some of them are trying to get them back and others have deregistered and are keeping them at home.

“Some parents want to [home school] and others are only doing it as a last resort. We see a lot of parents suffering because the school can’t support the child and they’re having to hold down a job and have their child at home all the time.

“We’ve got one group where 60 per cent of the parents have children who have been off school for months and months. Some of them, after waiting months and months, have finally got a space in a special school.

“I do feel that there’s responsiveness coming from the council at the moment, there’s a real openness to learn and change with the tight funding that they have. There’s a team within the SEND team in Bristol City Council who are really trying to make a difference, they funded us to make a film.

“It’s basically a training film to help SEND professionals communicate with empathy. We wanted to do this film because so many parents are coming to us traumatised by the way they’ve been talked to by professionals so we came to the council and said ‘this is a massive issue.

“There’s a wall between parents and you guys and part of that isn’t about what you can or cannot offer, it’s due to the way you talk. ’It doesn’t take a lot of money to make this change, just a change in the way they communicate by being less defensive and more on the same team.

Murmuration is also among 25-30 Bristol organisations who meet with the current cabinet lead for education, Asher Craig every six weeks to discuss how improvements could be made to the local SEND offer their opinions on the SEND Review that is currently in its consultation stage.

Bristol City Council's response

“Whilst these challenges have hindered efforts to deliver Educational Health and Care Plans within a 20-week window we are recruiting to increase the capacity of teams involved in these processes to improve performance in this area. Since our last inspection in September 2019, we have produced a Written Statement of Action (WSoA) which acts as our formal action plan for delivering the services and support that families need.

“This plan lays out in detail the improvements required and the milestones in place for monitoring progress. This progress is monitored by the Department of Education and NHS England. Progress reports have also been published following each monitoring visit and can be found on our website.

“Since our Ofsted inspection we have focused on SEND Co-ordinator (SENDCo) training to help increase SEND leadership in schools and improve early identification of children with SEND which we know is key. We have invested in delivering an increase in SEND specialist provision, with 142 new places which will be opening between September (2022) and January (2023).

“We are on track to meet the Mayoral pledge of 450 new specialist school places by September 2024. Delivering change for SEND families is a collaborative effort.

“The SEND code of practice which we work under places the need for councils, families, health and social care professionals to work together to assess, identify and support needs in partnership. We’re aware that some families feel that their views are not taken on board and we assure everyone that the input of parents and carers is highly valued and sought after.

“This input is always considered alongside any medical, social, educational and other professional assessments when trying to put in place support for a child and family. Any decisions taken about provision are communicated to families and there are opportunities to challenge the approach and work through concerns.

“We expect a return visit by Ofsted/Care Quality commission soon and will work with inspectors to assess our progress and use their feedback to inform the next steps of our journey.”

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