School age kids face five year wait for autism tests in Calderdale

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School age children in Calderdale can wait up to FIVE years for an autism assessment, leaving parents and carers very worried about obtaining a timely diagnosis and access to support.

Health chiefs apologise over children's five year autism test wait

The shock statistic was revealed in Calderdale Health and Wellbeing Board’s annual report for 2017-18 and led to calls for action from groups which support children who have the life-long condition, their families and carers.

In the case of pre-school age children the wait for assessments is less, but is still one year.

Nationally, new research this summer by former Health Minister, Liberal Democrat Norman Lamb MP, has revealed children and adults face waits of more than two years for an autism assessment and over three years for a diagnosis in some areas.

The National Autistic Society said that the “shocking” findings should act as a wake-up call for the Government and local services.

Norman Lamb said it was an issue both national and local government should tackle.

“These scandalous waiting times are happening despite clear evidence that early diagnosis and intervention can make a massive difference to people’s life chances,” he said.

“In many cases, a diagnosis is necessary for children to access vital support, including education, health and care plans.

“We know there can be complex cases which require several follow-up appointments with different specialists, but there is no excuse for the widespread delays we are seeing all around the country.”

For children of school age in Calderdale the situation is worse than that.

Last autumn, a report received from the board from the head of commissioning and partnerships highlighted a quadrupling of requests for children’s assessments on the existing pathway, in the context of financial challenges and a lack of long-term resource.

The report outlined an action plan with Calderdale Clinical Commissioning Group working with Calderdale Council on a review of all-age autism spectrum disorder services to identify opportunities to improve pathways and services to bring the help which is needed.

Groups which help families say changes cannot come quickly enough – in short, the waits for an assessment and the help which might follow are too long and unacceptable.

The volunteer-run Calderdale branch of the National Autistic Society has discussed the issues with the charity’s head of policy Sarah Lambert and said they were supporting families and carers as best they could to try and fill the gap.

Sarah Lambert said: “Many autistic people describe their diagnosis as life-changing.

“It can explain why someone has always felt different and help unlock crucial advice and support.

“Yet people are having to wait far too long in many areas, including in Calderdale, where the wait for school age children can sometimes be up to four or five years.

“This is unacceptable.

“Such long waits can be devastating and add to the strain on already vulnerable autistic people and their families.

“The volunteers who run our Calderdale branch do a brilliant job and have opened their support network to families awaiting a diagnosis, to help them through this difficult period of uncertainty.

“They, alongside other individuals and groups, are also working with local commissioners to make sure the voices of local autistic people and families are heard and services are improved.”

Sarah Lambert said the National Autistic Society was running a national campaign to draw attention to the impact of long waits and make sure the Government and NHS England act.

Research suggests that, on average, children wait over three and a half years for a diagnosis after first raising concerns with professionals, she said.

Peter Ruse, the chair of Family Voice Calderdale, and Shona Walsh, chief executive officer of Unique Ways, both organisations which help families in Calderdale who have children with the condition, agree that in Calderdale the waiting times for children and young people waiting for an assessment for ASD are too long.

“It is unacceptable that families can wait four or five years for an assessment under the present system.

“Long waiting times add more frustration to families, some of whom will already be in crisis.

“It is clear that there is not the capacity within the present system to cope with demand and more resources are urgently needed, they said.

Both Family Voice Calderdale and Unique Ways work in partnership with the local authority and recent experience has demonstrated that co-produced services are the way forward.

The success of co-produced initiatives has helped Calderdale families and the local authority and the CCG have been most receptive to this way of working, and a better path may be unfolding going forward.

“The CCG and the local authority are working to resolve this now and are including Family Voice Calderdale and Unique Ways in the process so we can represent a parent dimension in the planning process,” they said.

Family Voice Calderdale and Unique Ways believe the issue needs to be tackled on two fronts.

“Firstly, changing the current pathway because the current system is not fit for purpose if it cannot cope with demand. This will help parents and carers beginning the assessment process now.

“Secondly, families on the existing waiting list deserve to be treated as a priority, as they have already been waiting such a long time,” said the organisations.

Autism is a lifelong developmental disability that affects how people perceive the world and interact with others.

Recently, BBC television’s series The A Word follows a five-year-old boy and how his family cope with the revelation that he has autism. The series stars Morven Christie, Lee Ingleby, Christopher Eccleston and Max Vento as five-year-old Joe.