‘Harrowing stories’ suggest experts have been failing Brighton and Hove’s autistic children

Posted On 25 Apr 2014 at 6:45 am

Services set up to help some of Brighton and Hove’s most vulnerable children have instead been failing them and their families, according to an official report.

Young people with autism have not been given a timely diagnosis, denying them help and adding to the strain on their parents, carers and relatives.

The inconsistent and sometimes poor performance of health professionals, including family doctors, has also affected their ability to fit in at school and may have had adverse effects on their classmates.

The findings came to light came after services for autistic children were the subject of a Brighton and Hove City Council scrutiny panel which reported last week. It estimated that about 550 children in Brighton and Hove have had autism diagnosed.

The panel made 20 recommendations, many of them aimed at CAMHS (Children and Adolescent Mental Health Services).

The report’s introduction, by Councillor Rob Jarrett, said: “The panel heard a number of harrowing stories from people who have children with autism who felt they had been failed by the very services supposed to help them, children who had not received a timely diagnosis or support and who had struggled through school.

“For these families, the experiences they have had must not be underestimated – or replicated.”

Councillor Rob Jarrett

Councillor Rob Jarrett

The panel said in its report: “It must be noted that the panel heard some stories and ‘appalling experiences’ of people using CAMHS that go back over the years.”

It said that changes were under way although CAMHS is being urgently reviewed nationally by the NHS and investigated by MPs belonging to the House of Commons Health Select Committee.

The report also said: “The panel was concerned about the monitoring of existing services for children with autism and the apparent paucity of performance indicators.

“The panel recommends that steps are taken to ensure that robust and publicly accessible monitoring procedures are put in place alongside a comprehensive feedback system for parents of children with autism.

“The lack of home support for families with children with autism was highlighted to the panel as a glaring omission.

“The panel believes that the area of providing home support needs to be addressed as a matter of some urgency.”

In its conclusion the panel said: “The panel has found that there are areas of best practice and examples of innovative working but also that there is more to be done.

“In the spirit of openness and clarity, parents and families must be central to all the work currently under way.

“This, along with clear lines of communication and accountability, further training and raised awareness will add up to a step-change in the city.”

The scrutiny panel was chaired by Councillor Jarrett, a Green, and included a Labour councillor, Anne Pissaridou, and a Conservative, Andrew Wealls. They were joined by Rosie Moore, senior lecturer in the School of Education at Brighton University.

They heard from a support group, Amaze, which has a list of 440 children with autism whose parents have contacted the charity for information, support or advice.

They were told that some parents felt that they were being “batted away” by CAMHS because their children had some autistic traits but other traits were masked or not easily visible.

The panel also heard from Mascot, a support group with more than 160 members who are parents of children with autism living in Brighton and Hove. It is currently the only support group solely for parents of children with autism.

Mascot carried out two surveys looking at diagnosis, education, associated difficulties, mental health and wellbeing.

The key issues reported to the panel that arose out of the surveys were

  • A failure to provide timely, diverse, flexible services to meet the needs of ASC (autistic spectrum condition) children
  • Services provided were frequently ineffective, counterproductive, harmful or reactive
  • Families were not included at the heart of the process and left without a voice
  • Inconsistency in support provided even by the same service
  • A failure to proactively commission services

Mascot told the panel that some parents who spoke to them felt that they had been blamed for bad parenting.

The report said: “They explained: ‘It is important to state that some parents feel the focus is disproportionately placed on their parenting and some feel “blamed” for their child’s behaviour.

“‘A huge amount of damage is done by professionals blaming parents.’

“They also described very poor communication between professionals and families which leads to people having to repeat the same information over and over again.

“In addition, some parents report feeling ‘threatened’ if they flag up difficulties.”

The report added: “Whilst in no way wishing to downplay the experiences relayed to the panel, neither do the panel wish to paint an entirely black picture.

“It must also be noted that some of the terrible experiences are in past years rather than in recent months.”

And the panel pointed out that recent changes in the law would help parents with autistic children.

Councils, including Brighton and Hove, would have to publish in one place information about provision in their area for children and young people with special educational needs.

This “local offer” was not intended to be just a directory of existing services but an opportunity to improve provision.

The panel added: “In addition, an autism steering group has been set up in the city, a draft plan for children with autism is out for consultation and steps are under way to join up the mandatory Adults with Autism Strategy with the draft plan for children with autism.”

To read the scrutiny panel report, click here.

  1. Lyn Reply

    I went through hell with the services in Brighton and Hove for 25 years. When my daughter was eventually diagnosed at the age of 21 I was still refused help because she had been diagnosed “out of county”. I would have hoped that the situation would have improved by now.

  2. Lyn Reply

    I went through hell with the services in Brighton and Hove for 25 years. When my daughter was eventually diagnosed at the age of 21 I was still refused help because she had been diagnosed “out of county”. I would have hoped that the situation would have improved by now.

  3. michelle Reply

    Bizarrely I had,a meeting with Camhs about 3 weeks ago and I am not at all surprised by this report.

  4. michelle Reply

    Bizarrely I had,a meeting with Camhs about 3 weeks ago and I am not at all surprised by this report.

  5. PA Reply

    Nationwide CAMHS are failing, The NAS has reported on it and the Government has reported on it. But despite cuts to services, there is no excuse for the poor attitude of CAMHS clinicians, nor the ignorance about high-functioning presentation of autism, especially in females. There is a frequent suspicion of parents, a blame attitude, a condescension and sneering (“them and us”) and I am shocked at the autism ignorance prevailing. They rely on a clinical tool proven to be only 77% reliable in high-functioning individuals (ADOS-2) and seem to be increasingly dishing out “not enough traits for a diagnosis” or wrongly attributing autistic behaviours to other causes. CAMHS clinicians need urgent retraining, not only to improve clinical expertise but in how to deal respectfully and fairly with parents.

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