Tag Archives: Autism

Newspaper column: Scale of Autism backlog can’t be underestimated

Every month Jo Cox writes a column for The Press. This month’s column appeared in last week’s edition.

Many local children are having to wait more than two years for an Autism diagnosis. Nationally the average is more than three and a half years.

The scale of the backlog and delays – and the upset and turmoil it causes people – cannot be underestimated.

Since meeting with local families and working with the National Autistic Society I have been lobbying for action and I am delighted that Kirklees’s two clinical commissioning groups (CCGs) have just announced a plan to clear the backlog locally.

But this is a national crisis and a problem that the Government must address. I raised my concerns in a debate this week in Parliament.

Autism is a lifelong developmental disability that affects how a person communicates and relates to other people. It affects people in different ways. Some are able to live a substantially – or even a completely – independent life, while others may need a lifetime of specialist support.

The diagnosis is a critical milestone. It helps individuals take control of their lives and can unlock access to essential support and services. And it can be just as important for parents, friends and loved ones, enabling them to better understand their child, friend or partner.

It is a particular concern that children are having to wait so long. Not only does this this place tremendous strain on their whole family but also means that many children are not receiving the early intervention which could have a big impact in their formative years.

In many cases children are being locked out of the services available to them, support which can be life changing.

We now know the value and importance of early and fast diagnosis – and yet our system continues to fail so many children and adults.

One constituent of mine told me the story of her son – who is very much one of the lucky ones. She wrote to me and she told me about what a blessing his diagnosis of Asperger’s Syndrome had been. It didn’t just provide access to support and services but it helped everyone, including him, understand why he felt and behaved the way he did. He said he wished he had been diagnosed sooner because, in his words, “I always knew I was different, now I know why.”

He is one of the lucky ones because his parents had the ability to pay for a private diagnosis.

The NICE Quality Standard on autism is clear: once referred, people should wait no longer than three months for their first diagnostic appointment. In order for this to happen, both the Government, local authorities and NHS England need to act.

A crisis like this is a decade or more in the making but this Government should be judged on how it now addresses it. First, we need a new requirement on NHS England to collect, publish and monitor data on diagnosis waiting times, including data on how many people are known to their GP to have autism.

Second, NHS England should ensure that standard ‘waiting times’ on mental health reflect the NICE national guidance that no one will wait longer than three months between referral and being seen for diagnosis.

And finally, the Government must share in this commitment, ensuring that NHS England meets the three month target. To help meet this aim – access to an autism diagnosis should be written into the Department of Health’s Mandate to NHS England, which means that they will be held to account on this target and it becomes a priority for them to get right.

Autism debate: Ministers must deal with delays and backlog

Jo Cox leads a debate on AutismBatley & Spen MP Jo Cox used Parliament yesterday to raise concerns about the heartbreaking national crisis around Autism assessments and the backlog and delays that are preventing people, particularly children, from getting a diagnosis.

The national average is more than three years. Locally, some are waiting more than two years.

This follows on from work Mrs Cox has done with parents and others in Batley & Spen and with the National Autistic Society.

During the debate she welcomed news that the two Kirklees Clinical Commissioning Groups (CCGs) and Kirklees Council now have a plan in place to clear the backlog locally within a year.

After the debate, Mrs Cox said: “The government is slowly waking up to the scale of the personal tragedy of delayed Autism diagnosis.

“I think the commitment is there but the minister needs to keep driving forward progress to deal with the backlog and the delays.”

Mark Lever, chief executive of the National Autistic Society, said: “Too many autistic people and their families are being pushed into anxiety or depression by years waiting for an autism diagnosis. It is deeply traumatic not to know why you or your child feel or act differently to those around you.

“A diagnosis can be life changing. It can explain years of feeling different, give people essential information about what might help, and unlock professional advice and support.

“Reducing waiting times will drastically improve the lives of hundreds of thousands of people on the autism spectrum and their families, and it can also save money at a time when public funds are strained.

“The Government and NHS England have recognised the seriousness of the issue and are making some welcome steps to address it. But they have fallen short by not committing to start monitoring autism diagnosis waiting times across England. Without this, it’s very difficult to effectively measure how services are performing, work out what’s causing long waits in different areas and ultimately improve services.

“Autistic people have waited long enough, they can’t wait any longer.”

Jo Cox raises national crisis in Autism delays and backlog

Jo Cox leads a debate on AutismChildren are waiting on average more than three years for an Autism diagnosis.

The delays and backlogs with assessments is a national crisis and it was raised in Parliament this morning by Batley & Spen MP Jo Cox.

Without a diagnosis funding and support for children does not materialise. This has led, Mrs Cox has told Parliament, to many parents having to pay privately to get a diagnosis.

Mrs Cox said: “It is really important to underline the scale of this problem, and the consequences of it.

“You only have to meet a handful of parents to realise the unbelievable pressures these waiting times put them under. Diagnosis is a critical milestone for people on the spectrum.

“It helps individuals take control of their lives and can unlock access to essential support and services. It can be just as important for parents, family members and friends, enabling them to better understand what is happening to their loved ones.”

National Institute for Clinical Excellence guidance that says it should be no longer than three months before between being referred and being seen for diagnosis.

Jo Cox meets Autism campaigners from Kirklees before her debate

Jo Cox met with Autism campaigners from Kirklees before her debate

Mrs Cox has met with local families with children awaiting diagnosis, the National Autistic Society and those responsible for health services in Kirklees. She welcomes news, ahead of her speech, that a plan is now in place to clear the backlog in Kirklees within a year.

She said: “Some in Kirklees have been waiting more than two years for a diagnosis. I am delighted that the CCGs and Kirklees Council now have a plan in place to address the backlog having committed funding.

“I hope the government will take steps to help all local authorities and health commissioners to do the same across the country.”

One constituent told Mrs Cox what a blessing her son’s diagnosis of Asperger Syndrome had been. It didn’t just provide access to support and services but it helped everyone to understand why he felt and behaved the way he did. Her son said wished he had been diagnosed sooner because: “I always knew I was different, now I know why.”

Mrs Cox will tell MPs that this family were able to get a diagnosis because they had the ability to pay for it privately after raising £2,500.

“Here is a crisis now so acute that some desperate parents are paying for help that by right they should be able to access on the NHS – but what about those without the resources to pay? They are currently left in a distressing and damaging limbo – often for years,” she added.

Mrs Cox used the debate to ask the government to commit to:

  • A new requirement on NHS England to collect, publish and monitor data on diagnosis waiting times, including data on how many people are known to their GP to have autism.
  • That NHS England should ensure that standard ‘waiting times’ on mental health reflect the NICE national guidance that no one will wait longer than three months between referral and being seen for diagnosis.
  • That Government must share in this commitment, ensuring that NHS England now meets the three  month target and to meet this aim access to an autism diagnosis should be written into the Department of Health’s Mandate to NHS England, which means that they will be held to account on this target and it becomes a priority for them to get right.