Autism Diagnosis Waiting Times

Cheryl Gillan Excerpts

Tuesday 8th March 2016 Westminster Hall

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.