Autism: Diagnosis Targets

Tuesday 16th May 2023 Lords Chamber

Question

14:36

Asked by

[Lord Touhig]

To ask His Majesty’s Government what steps they are taking to ensure NHS targets for autism diagnosis are met.

[Lord Touhig (Lab)]

My Lords, I beg leave to ask the Question standing in my name on the Order Paper, and I declare my interest as a vice-president of the National Autistic Society.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Markham) (Con)]

We recognise that not all areas are meeting the NICE recommended maximum of 13 weeks between a referral for an autism assessment and a first appointment. In 2022-23, we invested £2.5 million to test and improve autism diagnostic pathways. In 2023-24, there is a £4.2 million grant to improve services for autistic children and young people. In April, NHS England published a national framework and operational guidance to help the NHS and local authorities improve autism assessment services.

[Lord Touhig (Lab)]

My Lords, by next year 190,000 patients are expected to be waiting for an autism diagnosis—it is already 130,000, and 67,000 of them have been waiting for more than a year. Research shows that there is a widening gap between the number of people who need to be seen and the number of staff available. In the last four years, we have managed to recruit just 19% more staff. The letter that the Minister helpfully sent us in April indicates that he is as concerned about this matter as any of us in this House. We appreciate that, but my question is simple: what is being done to recruit more staff?

[Lord Markham (Con)]

I thank the noble Lord, both for his question and for his interest and work in this space. The House will know that this topic is quite close to my heart as well. It is an area of challenge. We have more demand than ever. We are committed to recruiting more staff. We have a recruitment target for next year of 27,000. Very promisingly—I hope I will have time to go into this in more detail later, or I will speak to the noble Lord afterwards—there is a pilot scheme in Bradford looking at children’s early years scoring and how that can be used as a precursor to screening and testing.

[Baroness Browning (Con)]

My Lords, I too declare an interest as a vice-president of the National Autistic Society—I am always pleased to work alongside my colleague, the noble Lord, Lord Touhig, on these matters. Very often, parents, in desperation, particularly want an autism assessment when their teenagers get to the stage where they are leaving school and going on to further education or other types of study. Without that assessment, no decisions can be made. We have many excellent centres around this country, particularly places such as the Lorna Wing Centre, where assessments can be made. Is it not time that the Government outsourced some of this, as long as the NICE guidelines are followed in giving that assessment, to ensure that the list that the noble Lord announced to the House is reduced much more rapidly than is happening at the moment?

[Lord Markham (Con)]

Yes, absolutely, we need to look at all areas where we can increase and expand supply, including use of the private sector. I am sure I will be asked about ADHD later on and the “Panorama” programme, which shows that there are some pitfalls in all that, but provided they are assessing according to the NICE guidelines, it clearly has to be sensible to use as much supply as possible.

[Lord Addington (LD)]

My Lords, would the Minister agree that when you delay an assessment, you delay support from the entire structure of government, which we have said should be helping? What help is his department getting from the Department for Education and the Department for Work and Pensions to ensure people are getting to these assessments? If they cannot get the full assessment, can some intermediate steps be taken to ensure that people actually get the help they are entitled to?

[Lord Markham (Con)]

We are working closely with the Department for Education. The Bradford pilot scheme I mentioned takes the early years foundation stage profile scores of children. It knows that if you have a low score, you are far more likely to have autism. That triggers a multidisciplinary team to come in and inspect. That is a way that we can use that as an early warning indicator and then follow it up with volume. I hope that working very closely with the DfE in this space will be a real way forward.

[Baroness McIntosh of Hudnall (Lab)]

My Lords, the Minister has already anticipated receiving this question—I would not want to disappoint him. He is clearly aware that there is some question over the reliability of some diagnoses that are being offered, particularly in the private sector, for ADHD, which is another neurodevelopmental disorder. Is he confident that, in trying to scale up the availability of diagnosis, which is obviously an admirable aspiration, the quality of those diagnoses will be maintained? Are the NICE guidelines sufficiently robust to ensure that?

[Lord Markham (Con)]

As we all know, it is a complex area, and there is no black and white diagnosis of autism. The noble Baroness’s point is absolutely correct: we need to make sure that the quality is there. The Bradford pilot has now been running in 100 locations. Every child has to get an early years profile score. If we can show the linkages and follow that up with the screening programme, that will be very promising; but, absolutely, we have to make sure that the right assessment is made.

[Lord Kamall (Con)]

My noble friend the Minister has rightly said that it is important to expand supply and work with the private sector. Can he tell me about the work that the department is doing with civil society organisations and charities in expanding supply?

[Lord Markham (Con)]

Yes, when I talk about supply, it is in all these fields. There are organisations of which I have personal experience, including the National Autistic Society, which does tireless work and has helped me out personally. So I know just how good they are in this situation. Absolutely, the whole strategy in this space is to expand supply by both the private sector and the independent and charity sectors.

[Lord Sahota (Lab)]

My Lords, on autistic children, do the Government keep separate facts and figures for minority communities? I have encountered quite a few ethnic minority children who are suffering from autism. Are there separate facts and figures anywhere for these children?

[Lord Markham (Con)]

Clearly, we pull together all the numbers. Typically, about 2.9% of children and young people are diagnosed with autism. I do not know whether that is different among ethnic minorities. I will happily research that and write to the noble Lord.

[Lord Dobbs (Con)]

My Lords, may I ask my noble friend about artificial intelligence—AI? It is going to have a transformational impact on our National Health Service, for good, or possibly for ill. It will transform diagnosis, treatment, outcomes and—who knows?—it may even help us to make appointments more effectively. Of course, it will have an impact on those who work in the National Health Service as well as those who are treated by it. Have the Government started getting to grips with analysing what lies ahead with artificial intelligence? If not, I encourage them to do so very quickly because I believe that the impact of this will come much more rapidly than we might perhaps think at the moment.

[Lord Markham (Con)]

First, I totally agree with my noble friend’s sentiment about the power that AI, when done in the right way, can have in this space. Clearly, the stress is on the words “the right way”. I think it is fair to say that we are all on the nursery slopes as regards what it can do. I have seen how effective it can be in taking doctors’ notes, recording a meeting and drafting action points, which a doctor can then review. I am sure that we would all agree that that is very promising. There are future generations of AI being talked about that may be able to perform diagnosis. In the 10 to 15 years of looking ahead in the long-term workforce plan, these are some of the things that we will have to try to take into account. However, we are in the very early stages.

[Baroness Merron (Lab)]

My Lords, when it comes to autism services, we know that there are major disparities across the country which predate the pandemic but which were made much worse by it. The number of people waiting for an assessment has grown by 169% from pre-pandemic levels. How will the Minister ensure that the national framework and the standards for autism assessment within it are deliverable at a local level and in every part of the country?

[Lord Markham (Con)]

First, each ICB now has to have a lead for autism and learning difficulties. The noble Baroness is correct that there are some disparities— I am sure that she is aware of the two ICBs which have restricted their services quite significantly, although, thankfully, they are now rowing back on that. We need to make sure that we are on top of all of them. As the noble Baroness is aware, I and other Ministers are taking a personal interest in this. Clearly, there is a lot of work to be done.

[Lord Trees (CB)]

My Lords, what are the Government doing? Are they supporting research to find out the causes of this apparent huge increase in autism which we have seen in recent years?

[Lord Markham (Con)]

There are a couple of factors. Obviously, the strains and stresses of Covid have brought a lot of these things out into the open. It is good that people are becoming much more aware. My experience dates back 20 years when no one had even really heard of Asperger’s, so it is good that we are aware of it today. It is also good that many more people are now diagnosed with it.