Feature: Children facing ‘traumatic’ waits for autism diagnosis

NHS data suggests some patients thought to have autism waited more than 16 weeks for their first mental health appointments.

The national data was quietly published by NHS Digital last month (November 14) following a four-year-campaign by the National Autistic Society.

It revealed people were waiting more than two years for a diagnosis, despite a recommendation by the National Institute for Health and Care Excellence (NICE) that people with possible autism wait no longer than 13 weeks for an assessment following referral.

The data was submitted to NHS digital by 39 trusts, but data from 14 of them was suppressed due to low numbers of referrals.

It found that, between April and June 2018, 5,195 were referred to the trusts for autism assessments, but only 665 (13%) were given an assessment date before the 13-week deadline. While 765 (15%) waited longer than 13 weeks for an assessment, with some waiting 117 days to be assessed.

However, the average waiting times relate to only a quarter of patients – about 1,430 out of a total of almost 5,200, because in the majority of cases NHS trusts did not provide the dates on which patients were in contact with mental health services.

A spokesman for NHS Digital said the ‘experimental data’ was being published following a change in the way autism referrals are categorised with the intention of ‘involving users and stakeholders in their development and as a means to build in quality at an early stage.’

However, the National Autistic Society has branded the data ‘deeply disappointing’ and said it was shocked by how few trusts had submitted figures to NHS Digital. Suggesting that they have not been taking their responsibility to diagnose autistic people and report their waiting times seriously.

Jane Harris, director of external affairs at the National Autistic Society said: ‘For the first time, after years of campaigning, we have NHS statistics on how long children and adults are waiting for an autism assessment in England.

‘It’s an important first step but the data itself is deeply disappointing. Although the data should improve over time, what has been published is very limited and we have concerns about its quality.

‘We’re shocked that so few NHS trusts have submitted this information to NHS Digital. All trusts should take seriously their responsibilities to diagnose autistic people and report their waiting times publicly.

‘We’ve been calling for national autism diagnosis data for years, because that’s how we can make sure that services are meeting need and accountable to autistic people and their families. But what’s been published isn’t enough to give us the national picture at all.

‘Long waits can be traumatic for autistic children, adults and their families, who are often already vulnerable. A timely diagnosis – national guidance says you should get a first appointment within three months – is vital to getting the support they desperately need.

Without this, autistic people and their families can end up isolated, and develop mental health problems, often spiraling into a crisis.

‘Whoever is in government after the election needs to tackle the autism diagnosis crisis once and for all. That starts with a firm commitment to get this data in place. And this must go alongside a commitment to put specialist autism teams in every part of the country that can diagnose people in good time, and support them afterwards.

‘We’re looking to every party standing in England to make this promise to autistic people and their families.’

A spokesman for NHS digital said the statistics are based on a ‘forward model’ approach,  which captures all suspected autism referrals within a reporting period, later periods of data are then searched to check whether those patients have had a first appointment and in turn, whether they have received an autism diagnosis.

It said the main limitation of this approach is that there is a reliance on future data to identify whether care contacts have occurred. NHS digital said that, going forward it will be utilising the ‘reverse model’ approach, which captures all autism diagnoses within a reporting period, allowing analysts to search earlier periods of data to check when those patients had their first appointment and when they were referred.

The decision to release the data comes following the report by Parliament’s Joint Select Committee on Human Rights which revealed young people with learning disabilities and autism are being detained in mental health hospitals, inflicting ‘terrible suffering on those detained and causing anguish to their distraught families’.

The damning report included harrowing stories of patients being held in hospital against their will for months and often years, miles away from their family. Along with distressing witness testimony from patients who described being left in seclusion for hours at a time, and suffering broken bones at the hands of staff who tried to restrain them.

In response, health bosses announced that all mental health hospital patients with learning disabilities and autism will have their care reviewed over the next 12 months. While an independent panel will be established to oversee the case reviews of those in long-term segregation to further improve their care and support them to be discharged into the community as quickly as possible.

A spokesman for the Department of Health and Social Care (DHSC) said, following the report, the government will commit to providing each patient with a date for discharge, or where this is not appropriate, a clear explanation of why and a plan to move them closer towards being ready for discharge into the community.

Ann Norman, Royal College of Nursing professional lead for Learning Disability Nursing, welcomed the scheme but has raised concerns about the number of learning disability nurses available to support patients once they return home. She said:

‘Reducing unnecessary stays in hospital for those with learning disabilities is a welcome ambition and we are pleased to see mandatory training for NHS staff given the go-ahead – this must now be developed in collaboration with those with Learning Disabilities and the specialist nurses who work with them.

‘Ensuring patients can be discharged and cared for closer to home relies on there being enough Learning Disability nurses in both acute and community settings. ‘However, since 2009, the numbers of learning disability nurses in the NHS has fallen by over 40% with the numbers out in the community down by over 25%.

‘This part of the workforce, as much as any, needs investment and long term commitment to the recruitment and retention of the nurses it so desperately needs. We are pleased to see this pledge but it must to be turned into tangible action if we are to be able to see real change and address the failings that have left so many without the care they deserve.’