Beating the backlog: supporting those waiting for an autism assessment

Beating the NHS backlog: How we can support those waiting for an autism assessment

Dr Louise Morpeth


It was reported earlier this month that a record 7 million people are now waiting for hospital treatment with the NHS in England. To put this in starker context, 12% of the population is on a waiting list for consultant-led elective care. Unsurprisingly, this is the highest since records began.

In addition to this, 122,000 of these people are waiting for a clinical autism assessment  – a 38% increase in the past year. With the NHS at breaking point, the lists for these assessments seem to only be getting longer, adding to the already mounting pressure.

When it comes to those on the list for an autism assessment, the latest NHS statistics suggest that over 100,000 people are waiting longer than the 13 weeks targeted by statutory guidance. But it is difficult to get a sense of the true picture of waiting times because waiting times beyond this period simply aren’t recorded. In reality, it is a postcode lottery with massive variations across the country. 

Even once diagnosed, autistic people often need to undergo a care needs assessment to access support via social services. With more than half a million people waiting for a care needs assessment, they end up joining an even longer queue for support. 

This lack of support services continues to add to the NHS backlog and pressure, creating a vicious cycle. The number of referrals to mental health services each year is rising at a rate that outstrips population growth. 2021 saw a record 4.3 million referrals to specialist mental health services. This rising rate and extended wait for assessments means more people go undiagnosed, untreated, and without the support they need. People with mental health issues are three times more likely to attend A&E. Even before the pandemic, about 30 percent of GP caseloads were associated with mental health issues.

Health inequalities are increasing for autistic people, meaning that they have greater difficulties in accessing health care. These barriers to getting the right help result in higher mortality rates, higher likelihood to experience anxiety issues, and significant risk of self-injurious behaviour, with 66% contemplating suicide and 35% reporting a suicide attempt

With the rising number of people seeking a clinical autism assessment, lack of visibility of the true picture on waiting times, and lack of support post-diagnosis, our current system simply isn’t working.

We need to question whether the current system is set up to meet the huge variation in autistic people’s support needs, and ask how this support can be given alongside tackling the current healthcare backlog.

This is where technology comes in.


Digital self-management paired with human support

No two autistic people are the same or can be characterised by the same challenges. As with neurotypical people, every individual is different in what they may find to be anxiety-inducing.

Technology can help navigate these challenges when they arise, and help deal with triggers before  issues snowball into a crisis. With a little support, tailored to their needs, many autistic people are able to self-manage difficulties and live more independently.

As an example, a first of its kind clinical study demonstrated that providing digital support to autistic adults, or people on the waiting list for an autism assessment, can achieve positive psychological outcomes and help people maintain their wellbeing. The study, which focused on Brain in Hand - a combination of digital self-management tools and human support - showed significant reductions in anxiety, self-injurious behaviour, and problems with memory and orientation.

Professor Rohit Shankar MBE, FRCPsych, Consultant in Adult Developmental Neuropsychiatry (CFT), professor in neuropsychiatry, University of Plymouth, and director of CIDER, who led the study, said: “Autistic adults are a vulnerable population with significantly higher rates of psychological distress, higher levels of self-harm, and increased premature mortality. If we are to level the playing field for autistic people, we need to consider these types of innovative approaches that inform, enable, and empower people to manage for themselves.”

With simple digital tools and the right human support, people can manage anxiety, build confidence and increase their independence.
These tools can include personalised routine planning intertwined with steps to manage situations that cause anxiety. Users can work out strategies based on their needs, goals, and skills, and decide on the features that will work best for them. And specialist human support can unlock difficulties and build self-efficacy from the start.

This routine planning, paired with gentle reminders and monitors, can give greater insight into what is working and where help might be needed, and help people to realise and communicate their needs.
Simplicity and accessibility are key. These digital apps and support technologies are not medical devices and not to be used in lieu of a doctor or medical treatment where needed. They can, however, help people manage their own needs and wellbeing where it is safe and appropriate for them to do so. Through improving confidence and independence, and ensuring that the right support is easily accessible when it is needed, technology can allow people to safely become less dependent on services and carers.

Alongside these effective smartphone-based tools, person-centred support can also be offered. Technology allows for qualified specialists to be available round the clock for when that extra help may be needed to relieve anxiety and maintain wellbeing. Ultimately, the longer the wait times get without support like this in the meantime, the more people will reach a point of crisis. The cost of failing to support autistic people in the UK is more than £32bn per year. This figure is expected to rise.


What needs to change?

The current system is not meeting the needs of everyone, particularly autistic people. Many autistic people are often ‘hidden’ from existing health and social care services, with 74% of autistic people reporting difficulties in accessing health care.

Autistic people and those who struggle to manage mental health challenges such as anxiety may need extra support in a range of different areas, but if this help is planned ahead of time, it can   reduce or even entirely prevent issues before they arise.  

While technology can help support those who are facing a long wait or who need support once diagnosed, a much bigger change is needed on a systemic level to ensure that each individual is empowered, supported appropriately and in turn able to manage more for themselves. If we can do this, we have a chance to prevent people from reaching a point of crisis. This could result in less strain on stretched health and social care services, as well as avoiding enormous distress for people and their families.

Technology like self-management apps can help to give immediate access to support, at the right time and accessible in the right way, to those who need it. Ultimately, helping to close this inequality gap will be key, and it’s down to local authorities, the NHS, and technology providers to work together to find accessible solutions for all.

Two people talking face to face

With waiting lists for assessments at record highs, and with health outcomes shockingly poor for autistic people, how do we get support to those who need it? BiH CEO Dr Louise Morpeth argues that digital tools could be the answer. Click below to read the article on Open Access Government.

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