Autism Diagnosis

Jackie Doyle-Price Excerpts

Wednesday 13th September 2017 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship this morning, Mr Howarth. Thank you for giving so many Members the opportunity to speak, because the debate has been extremely valuable. I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous) on securing it. The discussion was highly informed and showed how important Members consider the issue to be. That is to be celebrated, given the 2009 starting point that my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) mentioned.

There have been significant advances in the treatment of people with autism, notwithstanding the serious issues raised today. I will not pretend that things are as they should be, because clearly they are not. Our ambition is for people to receive a timely autism diagnosis, but the cases that hon. Members have raised today make it clear that the standards that families deserve, and that they have a right to expect, are not being met. All Members who said that we need to do more are right. I give the House an assurance that I am determined about our need to do better.

I look forward to cross-party work with the all-party parliamentary group, and to the review of where we have reached since the Autism Act 2009. I welcome the input of all Members, because only by understanding the real-life experiences can we make everything work better. In Government we tend to work through such things as targets and processes, which ignore the fact that we are dealing with real people. When we are dealing with people who have conditions such as autism, the processes can leave them behind. It is down to all of us to be the conscience and to ensure that all our public services work better in this field. We do have a sense of urgency on this.

I want to deal with some of the common points that have been raised. Many Members wished to know when the autism data will be published. Our intention is that the data will start to be collected from next April, with a view to publication in 2019. That is hugely important, because it will enable us to see which local areas are doing the job and which are not. There is nothing like transparency to hold people to account and to ensure that we get the consistency and delivery of service so that nobody is left behind.

The Care Quality Commission and Ofsted are currently undertaking a five-year rolling programme of inspections, looking at how things are being implemented in local areas, how health services are working and how education authorities are dealing with education, health and care plans, which were mentioned in earlier contributions. We all know, and have witnessed, that so much is dependent on local leadership. If we can highlight good practice and where things are going well, as well as where things are not, we will be able to generate the pressure to increase performance across the board.

My right hon. Friend the Member for Chesham and Amersham mentioned mortality rates for people with autism. I know that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Portsmouth North (Penny Mordaunt), shares my concern that people with autism and learning disabilities tend to get left behind when it comes to employment and access to health, which has an impact on mortality rates. She and I are very much prioritising that. I look forward to engaging with the all-party parliamentary group on those issues too, because we will have much to learn from its expertise.

The hon. Member for Worsley and Eccles South (Barbara Keeley) specifically asked whether we would commit to including autism in the primary care register. We have said that we expect GPs to do that and that we want to spread that good practice. We will be working with NHS Digital to do exactly that. Again, I am open to any suggestions in that space.

With regard to access to further services following a diagnosis, that is very much the space of local commissioners, but the inspections by the Care Quality Commission will enable us to hold local commissioners to account on exactly that.

[Alex Cunningham]

The Minister knows how frustrated parents are by the delay in getting an official diagnosis, but it is the knock-on effect on other assessments, such as education support plans, that really adds to their burden. Will she give any advice to local authorities and CCGs to look beyond the official diagnosis, to make some of those other things happen?

[Jackie Doyle-Price]

We very much send the message that parents of children with autism are entitled to good services and that is what they should expect. We need to spread that good practice and collect those data, in order to highlight exactly where it is not happening. When we look at the work that the Care Quality Commission has done to highlight good practice, we should be able to get some messages. We are looking for transparency to drive performance and to have those conversations. The NHS mandate for 2017-18 sets a priority for the NHS to reduce health inequalities for autistic people, so that is very much part of NHS England’s conversations with local CCGs.

[Siobhain McDonagh]

On that point, will the Minister refer to the issue of South West London and St George’s Mental Health NHS Trust and the five CCGs in south- west London?

--- Later in debate ---

[Jackie Doyle-Price]

I was just coming on to that. I have to say that I was very concerned by the issues that the hon. Lady raised. It occurs to me that there is a real risk that what they are suggesting could be seen as discriminatory. Certainly what she suggested should not be undertaken without real consultation with the local community and illumination of the issues concerned. She mentioned that she was going to write to me about that, so I look forward to considering it with a bit more reflection and then coming back with a response.

[Mrs Gillan]

While the Minister is discussing correspondence, she may not have the answer to what, for me, is a crucial question—the detail of the self-assessment framework that is sent to the top-tier councils. She will remember me mentioning that we know that one local authority has a 125-week waiting time. I appreciate that she will not have the detail here, but will she undertake to write to me in the next week and let me know when she will publish that detail, so that we can all access the information?

[Jackie Doyle-Price]

There is a good argument for being very open about this generally. The self-assessment framework obviously requires local authorities to mark their own homework, and even then we are not seeing the increase in performance that we would like to see. One of my main messages is that we can all learn from good practice elsewhere, and bad practice can also be a learning experience. The more sunlight we can bring to what is happening, the better. I am happy to write to my right hon. Friend on that.

That brings me to the results of the most recent self-assessment exercise, which show that only 22% of local authorities are meeting the recommendation of a maximum three months between referral and first appointment for an assessment. That is obviously not good enough. On the plus side, a further 23% said that they anticipated meeting recommended waiting times by March this year and that they would be able to sustain that, but that is still only half. Although the direction of travel is positive, there is a lot more work to do.

[Norman Lamb]

The Minister may be coming on to this, but will the Government consider introducing a national maximum waiting time standard for diagnosis, rather than for first appointment, so that every child knows that they will get that within a specified time?

[Jackie Doyle-Price]

I fully appreciate the right hon. Gentleman’s point. I am slightly uncomfortable about this, because often it can take a considerable amount of time for a proper assessment between first appointment and diagnosis, but perhaps we need to look at other measures. Generally, the more data we have in this area, the better we can measure performance. Clearly we need to ensure that we have sufficient specialists who are able to undertake these assessments and diagnoses. Sometimes that can be a challenge, so we need to ensure that local commissioners have access to those specialists.

[Jonathan Reynolds]

Many of us are flexible about how we will get to the system we want to see, and capacity is definitely an issue when it comes to specialists. On the point just made by the former Minister, the right hon. Member for North Norfolk (Norman Lamb), the problem is that at an initial assessment people are told, “You don’t need to go and have the official diagnosis yet. Try to persevere in mainstream school. See how the child develops.” The problem, as other Members have said, is that in the early stages of life, each month of development is so important, and we get to a point where, frankly, even if a diagnosis is given, so much has already been lost. That is the purpose of a national maximum diagnosis waiting time.

[Jackie Doyle-Price]

I hear the hon. Gentleman’s point, but the wraparound support and care will do more than any finite target time. I am happy to look at that.

We are running short of time and I really need to give the hon. Member for Enfield, Southgate time to respond. We have had a very constructive discussion today, and I look forward to engaging with all hon. Members on these issues.

[Mr George Howarth (in the Chair)]

Before the hon. Gentleman responds, may I thank all Members who contributed today, and particularly those on the Front Benches? It was very difficult to get everybody in, but we managed it in the end—certainly all those who had applied to speak. I call Bambos Charalambous to respond.