Autism Diagnosis Waiting Times

Jo Cox Excerpts

Tuesday 8th March 2016 Westminster Hall

[Jo Cox (Batley and Spen) (Lab)]

I beg to move,

That this House has considered autism diagnosis waiting times.

It is a pleasure to serve under your chairmanship, Sir Roger, and to lead this important debate.

As hon. Members will know, autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It is a spectrum condition, which affects different people in different ways. Some people with autism are able to lead a substantially or even completely independent life, while others may need a lifetime of specialist, complex support.

Diagnosis, which is what we are here to discuss, is a critical milestone for people on the spectrum. It helps individuals to take control of their lives and can unlock access to essential support and services. Diagnosis is important not only for those who are on the spectrum. It can be just as important for their parents, friends and loved ones, enabling them to better understand their child, friend or partner.

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

My hon. Friend may know that I have an autistic child in my family and that I chair the newly formed commission on autism. Would she agree that it is absolutely about the family support that would come from early diagnosis? At the moment, so few people get it.

[Jo Cox]

Absolutely. I bow to my hon. Friend’s experience, expertise and doughty campaigning on this issue, and I could not agree with him more. Tragically, as we know, many thousands of people up and down the country, including children, wait far too long for a diagnosis. For children, on average the current wait is now more than three and a half years.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I congratulate the hon. Lady on obtaining this debate, which is very important to a large number of people beyond this Chamber. As she knows, I hold the honour of being the elected chair of the all-party group on autism, which has been going for many years now. Diagnosis waiting times are a very important issue for Members of Parliament involved in this area. Does she also hope that we will hear in the Minister’s reply about the importance of NHS England’s collecting and monitoring those diagnosis times for each clinical commissioning group in England? That is important and will mean that we have the data.

[Jo Cox]

I agree entirely. Let us hope that we have an answer on exactly that point from the Minister. I applaud and bow to the right hon. Lady’s commitment and experience on this issue.

While the average waiting time for children is more than three and a half years, many adults receive a diagnosis only five years after concerns first emerge and often two years after seeking professional help. Some 61% of people who responded to a National Autistic Society survey said that they felt relieved to get a diagnosis when it finally came, and more than half—58%—said that it led to their getting new or additional much-needed support. It is of particular concern that children are having to wait so long for a diagnosis. Not only does that place tremendous strain on their whole family, but it means that many children do not receive the early intervention that could have a big impact on their formative years. Indeed, in many cases, children are being locked out of the services available to them, and that support can be life-changing.

Snowflakes is a nursery for children with an autism diagnosis or who are awaiting an autism diagnostic observation schedule assessment. The nursery is run by my sister-in-law, Stacia. One of its children was lucky and got an early diagnosis aged three. He joined Snowflakes and the team worked with him and his family for two years. The dedicated staff managed to help him into a mainstream primary school with support, and he is still in that school and is thriving. Another child came to Snowflakes because her mainstream nursery was unable to cope with her challenging behaviour. She is now on an 18-month waiting list for a diagnosis, but is due to start primary school in just six months’ time. She is making good progress within the specialised setting and is now a role model for other children. Her parents want her to move on to a primary autism resource, but to get a place she needs a diagnosis.

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

I thank the hon. Lady for securing this important debate, which I feel strongly about. In my constituency, I have had contact with families experiencing exactly the issues that she is raising. Is it not important that more clinicians are trained to diagnose and that teachers are able to pick up very early signs of autistic spectrum disorder?

[Jo Cox]

I thank the hon. Lady for that helpful intervention. I agree with her, and let us hope that the Minister addresses that point in his comments.

To return to the example of a little girl who faces a choice. Without a diagnosis she will be forced to accept a place in a mainstream primary school that will not be able to meet her needs. With a diagnosis, however, she would go to a primary autism resource using the specialised teaching methods she knows and trusts. She would be able to continue her education and in turn increase her life chances.

Many parents tell the National Autistic Society that delays in getting diagnoses have also led to the development of serious mental health problems, both for the individual and for the family. For example, having presented himself to GPs for 20 years, Chris was diagnosed with Asperger’s syndrome in 2007 after finally deciding to go private. Without a diagnosis, appropriate support or an understanding of his needs, he experienced mental health conditions for most of his life, including depression, anxiety, obsessive-compulsive disorder and mild Tourette’s. He was hospitalised when he was 15 and later became suicidal when his needs were not met.

We now know the value and importance of early and fast diagnosis, yet our system continues to fail so many children and adults. Members present will have heard stories from their constituents or family members and will have no doubt been deeply affected by them, as I have. One has to meet only a handful of parents to realise the unbelievable pressures that the waiting times put them under.

I could tell a number of stories from my own constituency—members of some of the families affected are here today—but I want to tell the story of a young man from Batley. He is one of the lucky ones: he now has his diagnosis of Asperger’s syndrome. His mum wrote to me and told me what a blessing the diagnosis has been. It did not just provide access to support and services, but it helped everyone, including him, to understand why he felt and behaved the way he did. He said he wished he had been diagnosed earlier because:

“I always knew I was different, now I know why.”

He is one of the lucky ones, because his parents had the ability to pay for a private diagnosis. They raised £2,500 to fast-track the process, but they should not have had to do that. What about the great many of my constituents who do not have the means to afford a private diagnosis? Another of my constituents, who is also from Batley, has had to give up his job to accompany his son to school every day. Without a diagnosis, the school is not able to fund the additional staff it needs to take care of his complex needs. It is a problem not only in my constituency, but throughout the country.

[Mr Sheerman]

My hon. Friend is being generous in giving way. Is it not also disappointing for constituents and for people we know in the autism field—some very experienced people have intervened on her on that count—when someone goes into a health diagnosis and the health people say, “We can give you the diagnosis, but you will not get any help because the local authority does not have the capacity or the trained people to provide that help”?

[Jo Cox]

Absolutely. My hon. Friend again raises a very valid point. We are talking specifically about diagnosis delays, but once someone has a diagnosis, that opens up a whole range of issues that I hope the Minister will address.

[Mrs Gillan]

Further to the intervention by the hon. Member for Huddersfield (Mr Sheerman), one of the key things that the all-party group has been pushing for is better data collection in local areas so that we can more effectively plan and commission services. Nationally, it would mean that we could then ensure that each area is meeting the needs of its local population. Does the hon. Lady agree that it will be interesting to see whether the Minister can tell us what discussions he has had on that and how he intends to take the subject forward appropriately and properly with NHS England?

[Jo Cox]

I agree entirely, and one of the worrying things that became apparent to me in my research for this speech is the growing regional disparity in autism diagnosis waiting times, as well as in the service someone gets once they have a diagnosis. Let us hope that the Minister addresses that point.

My constituent from Batley has given up his job so that his son can attend school every day. As I have said, the problem exists not just in my constituency, but up and down the country, and stories from the NAS highlight that. There is Mel from Watford, whose son waited nine years. Noah, who is four, waited two years for his diagnosis—that is half his life. Meanwhile, data from Public Health England from the latest adult autism strategy show huge regional variation in adult services, with waiting times between referral and first appointment —not even the whole diagnosis journey—in the south-west reaching 95 weeks. In my region of Yorkshire and the Humber, it is 84 weeks. The NICE quality standard on autism is clear: once referred, people should wait no longer than three months before having their first diagnostic appointment. For this to happen, the Government, local authorities and NHS England need to act.

In my own local authority, Kirklees, despite strong leadership and a clear commitment to protect and safeguard vulnerable children and adults, there is an acknowledged crisis in children’s mental health and autism services. Some families have been waiting more than two years for a diagnosis, often longer. I have been encouraging Kirklees and its clinical commissioning groups to clear the backlog and redesign their services, and I am pleased to announce that, starting last Friday, a plan to clear the backlog within 12 months is now being rolled out regionally. This will quadruple the number of diagnoses that can take place in my constituency.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on securing this debate. Autism diagnosis across the whole of the United Kingdom of Great Britain and Northern Ireland is a big issue. In Northern Ireland, some 2,000 young people are waiting for a diagnosis, although the Minister has set some money aside. There is a need not only for early diagnosis, but for further stages of the education programme as well. Does the hon. Lady agree that the Minister should consider what has been done regionally—in Northern Ireland, Scotland and Wales—because there are lessons to be learnt that would benefit all of us?

[Jo Cox]

I agree entirely. It is time for the Government to bring a wider discussion about autism services to the Floor of the House.

My local authority’s announcement last Friday now means that we will quadruple the number of diagnoses that can take place in my constituency. It still needs to redesign the service in a way that prevents future backlogs, but this is good news for Batley and Spen and for people across Kirklees. However, it should not go unacknowledged that local authorities such as mine are working hard to reform services in an environment of severe and disproportionate budget constraint, imposed on them by Government. Of course, this is just one local authority; what about the hundreds of others and the desperate families in their care?

We also now have to accept that this failure to diagnose autism early ends up costing taxpayers much more. When developing its guidance for health services, NICE stated:

“Investment in local autism services also contributes to: a reduction in GP appointments, fewer emergency admissions and less use of mental health services in times of crisis, including the use of inpatient psychiatric services.”

[Tom Tugendhat (Tonbridge and Malling) (Con)]

The hon. Lady speaks with great power and passion. I support her absolutely and thank her for securing this debate. In my own constituency, the Grange Park School, which I have often visited, specialises in autism care. The school’s view is that proper care and diagnosis relieves the burden on the police, who are often called in to deal with situations that are not policing matters and not for the judicial system, but for the mental care system, and, if handled properly, for the education system.

[Jo Cox]

The hon. Gentleman makes a fascinating and pertinent point, particularly as we heard about a case this morning that was very tragic and relates to some of the themes he has raised. I know he is personally committed to this issue, and it would be good to have a response from the Minister on his point.

The National Autistic Society tells us that by investing in autism diagnosis, the NHS could save the enormous amounts of money currently spent on mental health services that result from autistic people not getting the support that they need, as they have not got a diagnosis. As well as having negative consequences for someone’s life, acute services are also very expensive, with in-patient mental health care costing between £200 and £300 a day. In other words, the annual cost of supporting two people with autism in a mental health ward would fund a specialist autism team serving an entire borough for a whole year.

Furthermore, identifying and supporting someone on the autism spectrum can save money in the wider public sector. According to the National Audit Office, an 8% identification rate would save £67 million a year. Over the five years to 2020, that is a potential saving to the public purse of £337 million.

[Tom Tugendhat]

We rightly look at pounds, shillings and pence when we talk about the public purse, but does the hon. Lady recognise that identifying and supporting autism saves families from failing? The saving to the public purse is significantly greater than the figure she has given, because it relieves the burden on many other branches of public services that would otherwise have to support a failing family.

[Jo Cox]

I entirely agree. The hon. Gentleman makes a very valid point.

Crises in autism services are a decade or more in the making. The blame cannot and should not be pinned on one party or one Parliament, but now that we are more aware of the problem and the scale of it, this Government should be judged on how they fix it.

I urge the Minister, who I know is personally committed to this issue, to agree to implement in full the National Autistic Society’s key recommendations to help tackle the crisis: first, a new requirement on NHS England to collect, publish and monitor data on diagnosis waiting times, including data on how many people are known to their GP to have autism. Secondly, NHS England should ensure that standard waiting times on mental health reflect the NICE national guidance that no one will wait longer than three months between referral and being seen for diagnosis. Finally, the Government must share in this commitment, ensuring that NHS England now meets the three-month target. To help fulfil that aim, access to an autism diagnosis should be clearly written into the Department of Health’s mandate to NHS England, which means that it will be held to account on this target and it becomes a priority to get it right.

Before I finish, I have three additional questions that I hope the Minister will address directly. What steps has his Department taken to ensure that the work done by NHS England’s information board will improve the collection and recording of data on autism in primary and secondary care? Will the Minister ensure that the recommendations in the King’s Fund’s recent report relating to autism diagnosis waiting times are taken forward? Finally, what assessment has the Minister made of the costs to the NHS of failing to diagnose people with autism in a timely manner?

The fundamental question facing us is this: the crisis is now so acute that some desperate parents and individuals are paying for help that by right they should be able to access on the NHS, but what about those without the resources to pay? They are currently left in a distressing and damaging limbo, often for years. I hope for their sake that when the Minister responds we will hear clear, time-bound commitments and actions, rather than vague assurances. I also hope, along with other Members, that he will commit to more time on the Floor of the House to discuss the many challenges facing individuals and families even after they have received a diagnosis.

I pay enormous tribute to the National Autistic Society, whose relentless campaigning continues to raise awareness and continues to press for action on this critical issue. I also pay tribute to all the parents, carers and professionals who support and love people living with autism.