Autism Diagnosis

Alex Cunningham Excerpts

Wednesday 13th September 2017 Westminster Hall

[Alex Cunningham (Stockton North) (Lab)]

I was asked to speak in this debate by one of my constituents, Nichola, who has a three-year-old son called Thomas. My hon. Friend the Member for Stockton South (Dr Williams) referred to them.

This is a very personal story but, before I get into it, I add my tribute to Daisy Chain, the charity based only a few hundred yards from my home in Stockton North that supports children with autism and their parents. I am pleased that the great Daisy Chain team are represented here today.

Thomas has many autistic traits, such as communications difficulties and limited speech, and is behind in all areas of development, including having sensory issues. He will have to wait more than three years for a formal autism diagnosis. That is simply not good enough, and the consequences could follow Thomas through the rest of his life. He has been refused an education, health and care plan; the very fact that he does not have an official diagnosis of autism means that it is harder for him to get one, so Thomas is at severe risk of falling even further behind his peers.

High-quality and appropriate early years education is critical for all children. I am sure that we are all aware of how important those years are in the development and future opportunities of a child, and yet we are in danger of denying that high-quality and appropriate education to Thomas and many children like him.

Thomas struggles in busy, loud environments, and he can lash out as a result. He needs special attention, extra care and that education, health and care plan. He attends a mainstream nursery that has gone beyond what it needs to do for Thomas, ensuring that he has a one-to-one staff member with him at all times. However, that has cost implications for the nursery, and it is not fair on Thomas or the other children. He needs a place in a specialist nursery—again, that takes us back to the education, health and care plan, and the official autism diagnosis. What a vicious circle!

Nichola has to begin applying for schools for Thomas to attend next September, but there is no education, health and care plan—I keep having to say that—so the process will be all the harder. At the moment, he is facing the prospect of mainstream school, which would not be suitable. Thomas is still in nappies and does not have the self-awareness that other children his age have.

I have already mentioned the Daisy Chain Project. It was founded in 2003 and serves as a haven for families across the Tees valley. Nichola speaks highly of the support that they get there. It provides a respite service but, again, without an official diagnosis, Nichola cannot access that support. I worry that young children such as Thomas will be left behind while their peers flourish. I worry that parents do not and will not have the support they need.

Families and education providers up and down the country are doing their best to cope, but they should be able to do so much more than just cope. We need a specific strategy for young people to secure early diagnosis and we need appropriate plans to support them. I hope that the Minister will tell us how we can do so much better.

--- Later in debate ---

[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.