Autism and ADHD Assessments

Bambos Charalambous Excerpts

Monday 6th February 2023 Westminster Hall

[Bambos Charalambous (Enfield, Southgate) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Fovargue. I thank the Petitions Committee for granting this important debate and all those who signed the petition to make it possible.

As the chair of the all-party parliamentary group on attention deficit hyperactive disorder, I am proud to speak in today’s debate on behalf of all those with ADHD and autism. I want to raise the enormous challenges and barriers they face daily and the importance of improving resources, training and access to diagnosis and treatment.

On 13 September 2017, in a debate I secured in this very Chamber, I spoke about waiting times, and diagnosis and treatment following a diagnosis of autism or ADHD. It is very disappointing that, six years on, ADHD and autism remain significantly underdiagnosed and undertreated in the UK, at great cost to individuals, public services and the workforce. I will focus my comments on ADHD.

ADHD is a neurodevelopmental disorder that results in a group of behavioural symptoms, including difficulty concentrating, inattentiveness, hyperactivity, impulsivity and difficulty sleeping. The symptoms affect people’s everyday lives—their development, education, work, relationships and family life. According to the ADHD Foundation, one in 20 people in the UK has ADHD. Although the disorder is associated with children and young people, up to two thirds of cases persist in adulthood. There is a growing understanding of the challenges that ADHD causes for adults.

Although awareness has increased and a lot more people—especially women—are openly talking about ADHD and seeking a diagnosis, there remain severe delays and barriers to diagnosis and treatment for ADHD in the UK today. That is leaving people in limbo and in need of support, and means that enormous untapped potential is restricted and hidden away.

Others have rightly mentioned that an early diagnosis of ADHD has a transformative impact on individuals. For someone with ADHD, a diagnosis can help them to understand their symptoms and gain control over behaviours such as inattention and impulsivity, allowing them to fulfil their potential. Diagnosis is absolutely crucial in enabling people to access treatment and get the support they need.

Although one in 20 adults is believed to have the condition, only 120,000 have had a formal diagnosis. There are many reasons for that. One is stigma, which manifests itself in many different ways, not least in societal attitudes to ADHD and the misconception that it affects only boys and young men. Others dismiss ADHD as an undeserving drain on health resources.

[Kim Leadbeater]

My hon. Friend makes the valuable point that sadly we still have a lot of work to do to reduce the stigma associated with ADHD and autism. Does he agree that we need an education system and, indeed, a society that celebrate neurodiversity and all the wonderful things it brings with it?

[Bambos Charalambous]

My hon. Friend makes an excellent point. We need education in society, and the acceptance of people with ADHD and autism, to ensure that people with those neurodiverse conditions are able to flourish and live to their full potential.

[Mr Robin Walker (Worcester) (Con)]

That is twice that the hon. Member for Batley and Spen (Kim Leadbeater) has intervened and I have agreed with what she said. As Chair of the Select Committee on Education, I am passionate about ensuring that we have the provision to address children’s needs. One challenge with the current delays in diagnosis is that although local authorities have the statutory duty to measure where provision is needed and to provide places accordingly, if children are not getting the diagnoses, they do not have the statistics. One thing that we can perhaps do with this debate is encourage faster diagnosis so that we can help to meet that need and ensure that, where specialist support is needed, it is provided .

[Bambos Charalambous]

The hon. Member is absolutely right: faster diagnosis is needed to ensure that the resources go to those who need the support the most. I very much look forward to the publication of the special educational needs and disabilities paper, because it might be a game changer if it delivers.

The inadequate services available for ADHD are another key barrier. As more people seek referrals for ADHD, there just is not the service capacity to match the demand. This is also an issue with staffing levels with regard both to people who can assess ADHD and to the support that is given after an assessment has been made, because there is a need to recruit people with those skills.

People are waiting years for an ADHD diagnosis, as access to services and treatment in the UK is limited and inconsistent. Indeed, according to survey data published in the ADHD Foundation’s “Born to Be ADHD” report, more than a third of adults and children diagnosed with ADHD had to visit their GP at least three times before being referred to a specialist, with 28% waiting two or more years before receiving a diagnosis. In advance of today’s debate, the Petitions Committee carried out a survey and found that most people who responded to the petition had had to wait more than a year for an assessment of ADHD or autism.

The impact of the delays cannot be overstated. The long-term effects of untreated ADHD are documented and include increased rates of other health problems, poor social functioning and antisocial behaviour. For example, those with ADHD are twice as likely not to take up full-time employment. It is also estimated that 24% of the prison population has ADHD, so intervention and diagnosis of ADHD would clearly improve the life chances of people with ADHD who fall into the criminal justice system.

Another problem is the inconsistency—what has been described as a postcode lottery—in support for people with ADHD. Where someone lives is critical in determining how long they are likely to wait to be referred.

[Mark Eastwood]

The hon. Member mentions a postcode lottery, dependent on where people live. Is it the case that that applies in the school system as well, and that some schools within a postcode even are better than others when it comes to looking after special educational needs?

[Bambos Charalambous]

The hon. Member is absolutely right: getting the resources after a diagnosis has been made is affected by which school the child is at and what resources it has available to provide the support needed.

As I was saying, where someone lives is critical in determining how long they are likely to wait to be referred for an assessment or diagnosis of ADHD, especially given increasing demand. As we know, there is no NHS waiting time standard for ADHD assessment, which means that waiting times are not measured and reported. Last week the Minister, in response to a Westminster Hall debate, pledged to look into national data collection for ADHD assessment waiting times. That would be a positive step forward and I urge the Government to take it. Will the Minister confirm today that she will ensure that that data is publicly available so that we can start accurately to measure waiting times and standards, and end the postcode lottery that exists in ADHD support?

[Sir Julian Lewis (New Forest East) (Con)]

May I ask the hon. Member, who is clearly something of an expert in this area, how reliable he thinks the diagnoses are when people eventually get their appointments? Two of the three cases brought to my attention feature quite strongly a resistance to making the diagnosis of ADHD, even though in these cases—one involving a child and the other a young adult female—they were absolutely convinced that this was the answer. All sorts of reasons are found, including a lot of misinformation, for not making what we think is the correct diagnosis.

[Bambos Charalambous]

The right hon. Gentleman makes an excellent point about the inconsistency in diagnosis. The unwillingness to give a diagnosis impacts on people’s ability to get on with their lives, which also needs to be addressed. On that point, will the Minister see what can be done to ensure consistency across the board on diagnoses?

I end by paying tribute to the incredible work of those involved in ADHD support: the charities, including the ADHD Foundation and my local National Autistic Society group; clinicians in the NHS; and members of the public who are pushing for change in how we think about and support people with ADHD so that those with the condition can thrive. As chair of the APPG, I know that the work of the ADHD Foundation and others is incredibly valuable. I hope that today’s debate, with the many excellent contributions that will follow from Members from all parties, will show the breadth of support in this place for ending the delays and barriers in ADHD diagnosis and treatment. It is time for the Government to act so that we can break down the barriers to success that thousands across the country continue to face in their everyday lives.