Children 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 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.