Autism Diagnosis Waiting Times

Tuesday 8th March 2016 Westminster Hall

10:03

[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.

11:03

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Sir Roger. I congratulate the hon. Member for Batley and Spen (Jo Cox) on securing the debate and on how she has represented her constituents’ particular interests and also the wider interests of those with autism. I thank colleagues for their interventions. The hon. Lady is right: there are a number of colleagues in this room with considerable experience in autism. Before I get into specifics, let me say that I will not have time to answer all her questions, but I will write to her on those that I cannot answer.

The debate raises once again one of those issues that in the course of my parliamentary lifetime has changed markedly. Only a generation ago, recognition and understanding of autism was extremely vague, but now it is very different. Recognition of the need to treat and to understand the families involved is beyond where it was, but that creates pressures in the system.

I want to say a little bit about what is happening locally. What the hon. Lady has described is a good example of how things can be recognised over a period of time. As she said, it is not the responsibility of one particular Government, but the responsibilities have grown over time, and what has been done about them might be a pattern for others. I will also say something about what we are trying to do nationally. I also want to recognise the work done not only by parents and those who are intimately involved, but by the National Autistic Society and the Autism Alliance—organisations that have done much work to represent those involved and will continue to do so.

Before I forget, I should respond to the hon. Lady’s last question: I would be very happy to spend more time discussing autism in the House. We ought to have a three-hour debate, or longer, and I would be very happy to respond to that. There are a number of questions out there about autism, not only in the House but in other places, and I would be happy to try to answer them, although I would have to deal with the general rather than the specific.

[Mrs Gillan]

As chair of the all-party group on autism, I am hoping to apply for a three-hour debate so that we can celebrate national autism week. I hope that the Backbench Business Committee will look on my application favourably, and I am sure that several colleagues present would not mind signing up to it as well.

[Alistair Burt]

I am sure it is of little interest to the Backbench Business Committee whether or not a Minister welcomes a debate, but if it is in any well helpful, colleagues can be sure that I would indeed welcome such a debate.

Before addressing the national picture, I shall discuss briefly the situation in Batley and Spen. Why has it taken so long to resolve the issues there? The list built up over a period of time because of pressures on both autism services and child and adolescent mental health services, and because of how services were commissioned. The number of referrals has increased to a level greater than one would expect based on national prevalence, so the clinical commissioning groups involved—North Kirklees and Greater Huddersfield—had to identify a service that had the right capacity and expertise to meet requirements. Colleagues who made points about training and the need to ensure that professionals are in place were absolutely right.

The CCGs have been working on the service for some time. As the hon. Member for Batley and Spen said, the issue has been identified and they are investing £340,000 over the next 12 months to bring down the backlog, including agreed funding for additional diagnostic capacity. The CCGs recently appointed Socrates Clinical Psychology, an independent sector organisation, to deliver extra assessments over a 12-month period, and they are about to begin writing to parents and guardians to inform them of developments. Appointments will be prioritised based on the length of time patients have been waiting for an assessment. As the hon. Lady said, the extra capacity will see the number of assessments rise from four a month to around 16.

The CCGs are currently in the process of redesigning adult social care services to meet national guidelines, to provide a greater number of assessments and to avoid the development of long waiting lists in future. A draft service specification and business case, which includes several options, will be discussed by the CCGs in the coming months, and the new service is to be in place by, at the latest, March 2017, when the existing contract comes to an end. Their response in recognition of the pressures that have built up is to be commended.

It is important to understand what is happening nationally as well as locally. We are all agreed on the importance of the timely diagnosis of autism. Although diagnosing someone with autism can be complex and involve a number of different professionals and agencies, it is clear that some children and adults can wait too long. Getting an autism diagnosis can be particularly important for families who are worrying about their children or for adults who did not have their condition recognised when younger and who need support to live their lives.

Yes of course early diagnosis saves money, but as my hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat) said, it is not simply a question of saving money later in the system: early recognition makes such a difference for the families involved, as well as the individual. That is taken as read, which is why there is now much more concentration on early diagnosis than there used to be.

Young people with autism face challenges to their education and wellbeing in all areas of their lives, and that can have an impact on their academic attainment and their ability to make the transition to independent adulthood. For adults who have not been diagnosed, their life to date may have been affected by a sense of not fitting in and not understanding the way they respond to situations or why they find social settings difficult.

Let me outline the framework that is in place to improve the lives of adults with autism. The 2010 cross-Government autism strategy, which came out of the Autism Act 2009, was updated in 2014 as “Think Autism”. New statutory guidance was issued in March 2015 which set out what people seeking an autism diagnosis can expect from local authorities and NHS bodies. The aim of the adult strategy is to improve the care and support that local authorities and NHS organisations provide for people with autism.

Nevertheless, we know that there is more to do to ensure that all those with autism get the help and support they need. In January, the Government published a progress report to further challenge partners across Government in areas such as education, employment and the criminal justice system—the latter was mentioned by my hon. Friend the Member for Tonbridge and Malling. The reforms to the special educational needs and disabilities system that came into effect in September 2014 represent the biggest change to that system in a generation. They are transforming the support available to children and young people, including those with autism, by joining up services across education, health and social care to identify and meet their needs.

The Department of Health’s mandate to NHS England for 2016-17 sets the priorities for the NHS and signals what the Department will hold the NHS accountable for. It includes an important call on the NHS to reduce health inequality for autistic people. Waiting too long for a diagnosis can be one of the health inequalities that autistic people face. Local authorities and the NHS should work in collaboration so that there is a clear pathway to diagnosis that is aligned with care and support assessments. Commissioning decisions need to be based on knowledge and awareness of autism and the needs of the local population, and, importantly, informed by people with autism and their families.

We know that in some parts of the country more needs to be done on developing diagnostic assessments. The hon. Member for Batley and Spen referred to the bane of the NHS system: local variability and the fact that things are not always done in the same way in the same place. I absolutely support the call by the National Autistic Society to ensure that good practice is shared across all areas. It is essential that the practice of the best becomes the practice of all, and I know that right hon. and hon. Members support that.

To help to standardise and improve the care and management of autism, particularly around diagnosis, and to enable health and social care services to support people with autism more effectively, NICE has published three clinical guidelines on autism and a quality standard. It recommends that there should be a maximum of three months between a referral and a first appointment for an autism assessment, and the NHS should follow that recommendation. Local areas will continue to be asked to assess their progress on implementing the adult autism strategy through Public Health England’s informal local area self-assessment exercise.

Let me address the point made by my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), as well as by the hon. Member for Batley and Spen. The Department of Health has discussed with NHS England the difficulties that can arise in getting a diagnosis. As a first step, NHS England, with support from the Association of Directors of Adult Social Services, is currently undertaking visits to CCGs and local authorities with the specific purpose of developing an understanding of the existing diagnostic process for children and adults, including engaging with people who have had experience of accessing the process, and their families. The focus is on identifying local barriers and how they can be overcome; how local areas measure quality and outcomes; the alignment with care assessments; and the identification of positive approaches that can inform learning for other areas. NHS England will issue an initial report in April, once the visits are complete.

To help with local planning, NHS England has also made a new commitment to collect data on the number of people in touch with learning disability and mental health services who have a diagnosis of autism. It is not for me as a Minister to task NHS England formally with monitoring waiting times; it is for NHS England to determine how it holds commissioners to account. Nevertheless, it will have to demonstrate effectiveness to me in meeting its mandate requirement. It is essential that waiting times are monitored locally by commissioners and included in their oversight of provision. I am interested to see the information that will be collected on the commissioning exercise that was mentioned. That information must be made public and will help with the provision of much-needed extra data about this subject. I hope that will help the new commission, the all-party group and others.

It is important to note that there are others involved. I draw particular attention to the service provided by our hard-pressed and excellent GPs. They are, of course, usually the gatekeepers to diagnostic services, and need to have a good understanding of the autistic spectrum and the diagnostic pathway that has been developed in their area. To build knowledge and expertise among health professionals, the Department has provided financial support to the Royal College of General Practitioners’ clinical priorities programme on autism, which is undertaking practical work on autism awareness and training for GPs. That will enable people who may have autism to be supported more effectively from the start of the assessment process.

In recent years there has been considerable progress on how effectively we identify and support the needs of people of all ages on the autistic spectrum. I do not deny that the complexity of autism and the multifaceted nature of the needs of those on the spectrum pose particular challenges to professionals and commissioners. CCGs locally and NHS England at a national level are working to bring down the waits in line with NICE guidelines, working with many different agencies, along with service users and their families, to create a more responsive environment of diagnosis and support. I know that the House will welcome that, although there is more to do.

Question put and agreed to.

11:03

Sitting suspended.