Autism and ADHD Assessments

Julian Lewis Excerpts

Monday 6th February 2023 Westminster Hall

[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.

--- Later in debate ---

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

I have learned a great deal from so many of the speeches that it seems invidious to pick out anyone, but I would like to compliment the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) because of her concentration on treatment. We have heard a great deal about diagnosis, but I was interested to hear about what the treatment options are.

I have no medical expertise or qualifications, but it is fairly obvious even to me that although many people who experience severe sleep disruption are not suffering from ADHD, people who are suffering from ADHD also commonly seem to have the terrible burden of a huge shortage of high-quality, slow-wave, deep sleep. Anyone who knows anything at all about the methods of interrogation and torture used by totalitarian regimes will know that the strongest and bravest person alive can be broken if they are incessantly deprived of decent, slow-wave, restorative sleep. It is appalling that young people and older people struggle for years before they receive a diagnosis that might lead them to the sort of treatment that could ameliorate the suffering described by the hon. Member for Rutherglen and Hamilton West and many others, so I hope and trust that this debate will go some way towards alleviating that situation.

In the short time available, I will touch on the three cases that I alluded to earlier in a brief intervention. They are all different. The first case is of an 11-year-old boy who was correctly diagnosed as having ADHD three years ago. His mother says that the problem is that CAMHS locally has no full-time psychiatrist who can provide the medication that he needs. Admittedly, the letter about this case came to me only within the last few days, so my office and I have not yet had the chance to find out if that statement is in fact correct, but if it is, that is obviously a serious gap in the system.

The second case is worrying because it involves the consistent refusal to give an ADHD diagnosis for a 12-year-old boy whose widowed mother, after a very long delay, finally gained access to the notes of his previous assessments, which were clearly full of demonstrable inaccuracies. For example, it was suggested that it was the loss of the husband and father that was causing the child such disturbance, when in reality the child had been struggling with his symptoms since the age of three—long before the loss of his father. Indeed, the notes also suggested that the child was affected by having to move out of the family home to live with grandparents, when in fact no such thing had happened. So, even allowing for the fact that I am hearing only one side of the story, it seems unlikely that my constituent could misreport such incontrovertible issues of fact.

I will finish with the final case, which involves a young lady who contacted me specifically to urge me to take part in this debate. I spoke to her on the telephone just before it began and I have her permission to quote from her letter to me, in which she says:

“I was recently diagnosed with ADHD myself, having been able to access an assessment through private medical insurance. Not only are the waiting lists for NHS assessment unduly long but the knowledge and experience of doctors and psychiatrists of the condition is, in my experience, severely lacking.

My mental health first deteriorated to the extent that I needed psychiatric intervention in 2018. At this point, I was suicidal. I had read about ADHD and mentioned to the psychiatrist that I believed that I had it. His response was, ‘I don’t know a lot about it, other than that it’s very difficult to diagnose as an adult and the medication is amphetamine, so you probably want to think very carefully about pursuing that.’”

She then gives a long list of severe symptoms and difficult experiences through which she had to pass, culminating in her making plans to end her own life. She says:

“If it weren’t for one GP questioning the dosage of the aforementioned antidepressant”—

which she was being incorrectly prescribed—

“and actually listening to me, I would probably have spent the last 6 months taking medication I didn’t need and still not have an answer. And there is a distinct chance that I might not be here at all.”

She concludes, and I endorse her point, that she was in the fortunate position of being able to get a private diagnosis. Celebrity cases are frequently diagnosed on the basis of a private diagnosis. There is something wrong if we have a two-tier system whereby those who can afford to pay can find out what is wrong with them, while those who cannot have to carry on thinking that they know what is wrong but without ever getting a diagnosis until perhaps, in some cases, it is too late.