I beg to move,
That this House has considered a waiting time standard for autism diagnosis.
It is a pleasure to serve under your chairmanship, Mr Howarth. During the last general election campaign, I attended a hustings in Enfield, Southgate organised by the local branch of the National Autistic Society. Following that meeting, and after further discussions with constituents and others on issues related to autism, I decided to request a debate on the matter. During this debate, I will briefly describe the effects of autism and explain the National Institute for Health and Care Excellence’s diagnostic assessment standard. I will also question why that standard is not being adhered to, explain the impact of late diagnosis and propose a way forward to the Minister.
As some people may be aware, autism is a lifelong developmental disability that affects how a person communicates with and relates to others and makes sense of the world around them. It is a spectrum condition and affects individuals to varying degrees.
All my constituents who contacted me about this issue are very concerned about the time taken for diagnosis. Does my hon. Friend agree that it is important to have a consistent approach right across the country—like in Wales, where last year the Welsh Government introduced a national autism strategy?
The hon. Gentleman talked about diagnosis times. In Northern Ireland, we fall foul of the 13-week standard, with some times peaking at 22 months. We have a vast shortage of psychologists. Does he agree that a massive recruitment drive is needed to reduce those times and achieve the standard?
The hon. Gentleman makes a very good point; I will refer to the requirement of additional resources later.
Autism usually first manifests itself in young children: four to five years old is the average age at which it is diagnosed, with girls being diagnosed later and less frequently than boys. Some people are not diagnosed until they are adults, after which they are then able to make better sense of things. Some of the early signs of autism include underdeveloped communication and attention skills, such as not establishing eye contact or responding to one’s name. It is widely acknowledged that autism can be reliably diagnosed at age two, and that early diagnosis is absolutely critical to allow parents and carers to receive the support they need so that they can give their child the best start in life that they can. It is safe to say that everyone supporting a child with autism benefits from early diagnosis.
Before looking at the NICE guidelines, I will reference the primary piece of legislation that covers autism: the Autism Act 2009, introduced as a private Member’s Bill by the right hon. Member for Chesham and Amersham (Mrs Gillan). It was adopted by the Labour Government of the day and became law. Section 1 of the Act states that the Secretary of State must publish an autism strategy by April 2010, and must keep that strategy under review. In March 2010, an autism strategy was drawn up, and it covered: increasing awareness; developing a consistent pathway for diagnosis; improving access to services; helping adults with autism into work; and enabling local partners to plan and develop local services. Section 2 deals with guidance about implementing the autism strategy, with subsection (5) stating that that must include guidance about diagnosing autism, identifying adults with autism and assessing their needs.
Following the granting of Royal Assent to the Autism Act and the drawing up of the autism strategy, NICE acknowledged the need for early diagnosis. In paragraph 1.5.1 of its “Autism spectrum disorder in under 19s: recognition, referral and diagnosis” guidance, under the heading “Autism diagnostic assessment for children and young people”, it states that autism diagnostic assessment should start
“within 3 months of the referral to the autism team.”
Does my hon. Friend agree that there needs to be support for the whole family of children with autism, especially when they are waiting so long for diagnosis? Will he also join me in celebrating a local charity in my constituency called Aim Higher, which supports and empowers children and parents with autism, and in congratulating it on being named Sainsbury’s local charity of the year?
My hon. Friend is making an excellent speech. Returning to support for families, is it not right that the functional needs of the child and the support for parents trying to address those functional needs could be addressed immediately, even without a diagnosis? That needs to be put into the system now.
Support early on is very much needed, and I thank my hon. Friend for making that point. In the early years, when parents and carers are trying to make sense of the situation, it is essential that they get the support they need from other agencies and that that is provided for.
The private Member’s Bill—later, the 2009 Act—was vital, but it has been too long since that time. We need action now. I chair the Westminster Commission on Autism, and a member of my family is on the autism spectrum. It is time to act now, to make the service universal for every child and to support every family. I hope that everyone’s interest will be regenerated today so that we can carry on the battle.
We are entering the period of reviewing the implementation of the 2009 Act. It will shortly be the 10th anniversary of the Act as well, so it is important that that is followed through on a cross-party basis. I assure the hon. Gentleman that the Government will certainly be, and are already being, held to account.
I thank the right hon. Lady for that helpful intervention; we look forward to seeing how that progresses.
The autism diagnostic assessment should start within three months of referral to the autistic team. That standard was set by independent experts, and for good reason. It is a fact that autistic people who are not diagnosed early enough are also highly likely to develop other neurodevelopmental conditions, such as attention deficit hyperactivity disorder—ADHD—dyslexia or dyspraxia. Early diagnosis and intervention could help to reduce the prevalence of those additional conditions.
I congratulate the hon. Gentleman on securing the debate. Does he agree that the NICE guidelines he alluded to are not figures simply plucked out of the air, but are carefully considered? What is vital is that if they are implemented people can get the support and assistance that they often need for this condition.
The hon. Gentleman makes an excellent point. The NICE guidelines are drawn up by experts who are qualified in their field, and it is only with the collaboration of the experts that the guidelines are set. They are set by experts and should be strictly adhered to.
The delay between referral and diagnosis not only causes more potential harm to children, but leads to untold stress and anxiety for parents and carers who cannot understand their child. If the delay was a matter of weeks, that would be bad enough, but thanks to research done by Dr Laura Crane at Goldsmiths, University of London we now know that in a sample of 1,047 parents who were surveyed, the average delay from referral by a health professional to diagnosis was three and a half years. The delay was more than four years for children diagnosed with Asperger’s syndrome.
The delay is alarming, and I have had difficulty corroborating it with any Government data. That is because data on the length of time from referral to diagnosis of autism are not collected by NHS trusts or clinical commissioning groups, so there is no way of holding the NHS to account for that failing. Since this debate was made public, I have had numerous tweets and emails, as have colleagues, that support the findings of Dr Laura Crane’s study and suggest that the delay in diagnosis is taking years, not months.
Does the hon. Gentleman agree that NICE needs to look at reviewing its guidance? It is not just about the first appointment. There is a risk that there is gaming of the system. People get their first appointment, but then it is stretched out to three and a half years, as we know. Getting the diagnosis is the critical thing.
Order. Before I call Bambos Charalambous, I should say that those seeking to make a speech in the debate may consider it unnecessary to make an intervention, enabling those who for one reason or another cannot make a speech to make a short intervention. I say that in an advisory sense; it is up to the hon. Gentleman whether he accepts any interventions. As they glance around the Chamber, Members will become aware that it will be difficult to get everyone in.
The right hon. Member for North Norfolk (Norman Lamb) makes a good point about the need for proper assessment of when the final diagnosis is actually made. It may not be at the first appointment; more than one appointment may be needed before the final diagnosis is established. It is absolutely vital that these diagnoses are made as soon as possible.
My hon. Friend is making a powerful speech in a timely debate. In light of this debate, a constituent contacted me and shared her very distressing experience of the five long years she waited for a diagnosis for her son. He requires support in every aspect of life and has suffered academically and socially while waiting for that diagnosis. Does my hon. Friend agree that waiting times are far too long? The damaging effects are long-lasting and a poor economic outcome for the country.
My hon. Friend makes the excellent point that the delay in diagnosing autism leads to further economic and social concerns that may have an adverse impact on society in general. That point was very well made.
NICE also has a quality standard for adults with autism, which again recommends that people should have a diagnostic assessment within three months of referral. NICE’s rationale for that states:
“It is important that the assessment is conducted as soon as possible so that appropriate health and social care interventions, advice and support can be offered.”
In my constituency of Enfield, Southgate there is currently no local diagnostic pathway. That means that an adult looking for assessment and a possible diagnosis could not have it done at North Middlesex hospital or Chase Farm hospital—or even Barnet General or the Royal Free, which are within the trust. Instead, they would have to be referred to the Maudsley hospital in south London—a distance of more than 23 miles. While I respect the excellent work that the Maudsley hospital does in mental health, I find it staggering that my constituents not only have to wait three years before getting an appointment for diagnosis, but then have to travel 23 miles to access the services. I suspect the distances may be longer for colleagues in other parts of the country.
Some parents and carers cannot bear the long wait and so feel compelled to pay privately to have their child diagnosed, putting them under extra unnecessary financial pressure in an already stressful situation. Once correctly diagnosed, a child will receive the support they need in schooling and wellbeing via a specifically designed local education, health and care plan, which could have life-changing effects.
On that point, a constituent, Zoe, explained to me how the diagnostic procedures are outdated. Some children are not being diagnosed as autistic because they can do things such as make eye contact, and then that diagnosis is proved to be wrong. She also said:
“If you become desperate and obtain a private diagnosis with an expert in the field, you are made to feel that you have bought the result and it is not seen as valid by schools and other SEN professionals. I think that the worst thing is the treatment of parents who are trying to help their child under what are extremely stressful and upsetting circumstances. Your parenting skills and your mental health are questioned regularly.”
Does my hon. Friend agree that that is a problem?
My hon. Friend makes an excellent point. Sometimes the private assessment is not recognised by the local CCG, so referral does not take place as planned, leading to more stress on families and children. I have enormous sympathy with her constituent who has faced that situation.
We all know that the early years of a child’s life are so vital for their long-term development. If a child does not get a good start, it is always hard to catch up. Research conducted by the charity Autistica has found that a programme of parent-led video therapy delivered during the early years of an autistic child’s life could significantly improve their communication and social interaction skills. People who are not diagnosed until adulthood can experience depression and have suicidal thoughts.
Does my hon. Friend agree that Autistica’s research also indicates that people with an autism diagnosis, once they get it, can have an increased risk of mental health conditions? In fact, such young people are 28 times more likely to consider suicide than other young people, and that affects adults who do not receive a diagnosis, too. People who have autism have an increased risk of suicide.
My hon. Friend makes an excellent point. Other additional conditions can develop, and suicidal tendencies are one of them. Other mental health conditions can similarly manifest themselves in young people in particular. I congratulate her on looking at that research.
My hon. Friend is being very generous in giving way. He is making such an important speech, and I congratulate him on calling this debate. One of my constituents wrote to me about how she was diagnosed as autistic in her 40s and the struggle she had in getting past her doctor. She said that once she had that diagnosis, it was life-changing, because she could understand that she was not lazy, weird or anything else; she was autistic. She wrote to me to say that she believes there is a need for greater training of GPs to spot the signs of autism. Does my hon. Friend agree?
My hon. Friend makes an excellent point. Sometimes the behaviours for autism in women and girls are not picked up as much as they are in boys, because they do not always display the behaviours that would lead someone to detect autism. I wish her constituent well for the future.
The lengthy delay in diagnosis can lead not only to the development of further secondary conditions to autism, but will invariably end up costing the NHS more money for more GP appointments, emergency admissions and reliance on mental health services at a time of crisis. In addition, delayed diagnosis has a disproportionate effect on women. Girls are often diagnosed late as they do not always display the same classic behaviour associated with autism as boys do.
How can the situation be remedied? I urge the Minister to consider implementing three things. First, we need to ensure that the NHS collects and publishes data for each NHS trust or CCG from the date that a child is referred to them until the date of diagnosis. At present there is no such requirement, so such a database should be cemented in the NHS accountability frameworks and should be held by the CCGs in their improvement and assurance frameworks. CCGs and the NHS trusts should be measured by how they perform on referrals and diagnoses.
Secondly, we need more investment in the NHS. To miss a standard set by NICE by more than three years leads me to believe that the Government are not really trying hard enough when it comes to ensuring that the children are seen and properly diagnosed within a timely period. It is scandalous that children’s futures are put at risk in such a way. Although the Minister may say that the three months is only a guideline and not mandatory, I believe the guideline should be strictly adhered to. The guidance is there for a reason.
We also need more specialist units to deal with diagnosing autism. We have in recent months heard some bold promises from the Government about funding for mental health, but we have yet to see any sign of firm action. We need investment in the NHS and we need it now.
Finally, we need to ensure that the improved record- keeping of autism diagnosis helps to identify where there are gaps, and that work can begin to tackle the health inequalities we face. I wish to thank the National Autistic Society and Autistica, and also the House of Commons Library for its excellent briefings on this matter. I await the Minister’s response.
Order. Before I call the next speaker, I should point out that many people wish to contribute, so there will be a time limit of three minutes starting from when the next speaker sits down. I apologise for that, but it is the only way we can try to get everybody in. Even then, it is unlikely that everybody who is down to speak will be called.
It is a pleasure to serve under your chairmanship, Mr Howarth. I will try not to take up too much time. I welcome the Minister to her place and look forward to hearing how she responds to the hon. Member for Enfield, Southgate (Bambos Charalambous). I add my congratulations, which I am sure will be echoed around this Chamber, to him on securing this important debate.
I am proud to be chairman of the all-party parliamentary group on autism, which has a wide membership across all parties. I like to think that this is one subject about which we do not need to be party political; we can all work together to try to secure better outcomes for people with autism and their families. I hope that the hon. Member for Enfield, Southgate and other new Members will join the APPG. Forgive me for the advertisement, but if they ring my office we will put them on the list and let them know what we are up to.
May I also welcome a very unusual appearance in this Chamber? I see that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Portsmouth North (Penny Mordaunt), is here. We do not often see a Minister from another Department who is not called upon to speak coming in to listen to a debate. I am encouraged by that and I thank her for being here, because it shows how seriously we take this matter.
If I remember correctly, the last time we were in this Chamber to debate autism was in a debate secured by the late Jo Cox. We all acknowledge that she was a great Member of Parliament, and she had also begun to champion autism in a major way. We are grateful for her contribution, which will long be remembered in this House. It is worth looking back at that debate to see how far we have come since then and what measures are being put in place to bring down diagnosis waiting times, because all of us, including the Government, were in agreement that people are waiting too long for diagnosis—that is a given.
Last year I had the honour of chairing a well-attended APPG public meeting on this issue. Those who were there might remember hearing from Melanie, whose son Sam had waited nine years to receive a formal diagnosis. Concerns were first raised only two weeks after he started school. She was passed from agency to agency until finally, at age 14, her son was given a formal diagnosis.
Melanie told us how frustrated she was at the number of missed opportunities to pick up on Sam’s basically hidden needs. It meant that she could not put in place vital support to help him when he was young, which she believes has had a significant impact on his development and, as one of the interventions alluded to, on the subsequent mental health problems he faced. It is sad to say, but she now regrets having pushed her son to fit in and socialise, because that caused him an enormous amount of stress. Although a nine-year wait is an extreme example, the stories that our constituents tell us clearly show that we need to do more to reduce waiting times.
Let me touch once more on the importance of ensuring that we properly record diagnosis waiting times and break down the data by local area. The National Autistic Society has asked that diagnosis waiting times for children and adults become part of the mental health services data set and that measures are developed so that waiting times for diagnosis become part of the NHS’s accountability frameworks. I think that we could all agree on that. If those recommendations were taken forward in full, that would allow Members here to assess how well their local area was doing and to be assured that diagnosis waiting times were being prioritised locally, while supporting constituents to hold their local services to account. After all, that is what we are here for.
The Government have indicated previously that they are working towards a better methodology for recording autism diagnosis, but it would help if the Minister could put on the record the work that the Government are doing in this area and when Members can expect to start seeing the data, which will help us all.
I also want to highlight the data that should currently exist for diagnosis waiting times for adults. The Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), is no doubt aware that a report on the results of the autism self-assessment framework was published in June. The self-assessment framework is a survey that is sent regularly to top-tier local councils in England to ask them to report on local implementation of the Autism Act 2009, which I introduced. Although the overview of the results across England was published in June, the Government still have not published the local area breakdowns on which it was based. That omission has meant that Members here are unable to scrutinise how their own local areas are performing. For example, we are aware that one local authority is reporting a 125-week waiting time. I am sure that the Members who represent that currently unnamed local area will want to know that information as soon as possible—I certainly would.
I thank the right hon. Lady for stating that this issue is not party political. Although the UK Government have introduced an Autism Act, it does not include children and has no funding attached to it, whereas the Welsh Government are investing millions in an innovative national integrated service. As well as investing millions in neurodevelopmental assessment services for children, they have introduced a 26-week waiting time target from referral to first appointment. Does the right hon. Lady think that patients in England would benefit from the Government looking at good practice in the devolved nations to improve services in England?
As a former Secretary of State for Wales, I welcome all the initiatives taken in Wales on this matter. An earlier intervention indicated that Wales had only recently introduced an autism strategy, but in fact Wales introduced an autism strategy back in 2008, before the Bill was introduced, so they are to be congratulated on taking that original initiative—I am not proud; I will learn from any quarter where we can improve our services.
My memory of introducing the Autism Bill is not a pleasant one. The Government of the day opposed it, but we defeated them on Second Reading of a private Member’s Bill on a Friday. That was why they decided to allow their draftsmen to work with me to produce a piece of legislation that they would accept. I decided that it was better to get that on to the statute book at the time, rather than to try to broaden the scope of the legislation. However, the hon. Member for Gower (Tonia Antoniazzi) is right. I was disappointed, but that is what I was able to get through at the time, and I felt that it was important.
Can the Minister commit to looking into the local area waiting times and publishing the breakdown as soon as possible? It is worth noting that concerns have been expressed about the waiting times data provided by the self-assessment framework. Some have described it as local areas marking their own homework, with little oversight, which does none of us any good. Including data on autism diagnosis in the mental health services data set, as I have outlined already, would help make sure that data are recorded properly and accurately.
Before I sit down, I want to touch quickly on the issue of mental health and autism, which has already been alluded to in interventions. Autism is not a mental health condition in itself, but research indicates that as many as 70% of autistic people may develop mental health problems. The lack of a timely diagnosis contributes to that and can mean that autistic children and adults develop mental health problems. A diagnosis can help to unlock the right types of support for autistic people and their families, which can prevent the development of problems further down the line.
In addition, autistic people diagnosed as adults frequently report how transformational that diagnosis is in helping explain years—in some cases, decades—of feeling different. More than 60% of respondents to a National Autistic Society survey describe getting their diagnosis as a great relief. In some of the most serious cases, autistic adults have reported that prior to their diagnosis they have not only experienced serious mental health problems, but even had suicidal thoughts, as the hon. Member for Blaydon (Liz Twist) mentioned earlier.
Research from Sweden suggests that suicide rates are significantly higher among autistic people than the rest of the general public. The Swedish study, which I recommend that Members read, showed that autistic people who did not have a learning disability were nine times more likely to commit suicide than the general population. It is worth remembering that the Swedish healthcare system is different from ours. However, given the seriousness of those findings, it is vital to find out whether that also applies to the UK and, if so, to understand the reasons for that. I hope that the Minister will commit to investigating issues of mortality and autism, and highlight what proposals the Government might have more widely to ensure that autistic people’s mental health problems are better dealt with by the NHS.
I welcome this opportunity to get an update from the Government on how we are progressing in this vital area. The stories of the time that it has taken for families to get the right support in place are truly heartbreaking. From looking at the latest statistics, we see that every Member of this House will have at least 1,000 constituents who are affected by autism, so this is not just a problem for one; it is a problem for all.
I have an aim. I feel passionately that we should ensure that every single public-facing person employed by the Government or the state—whether a teacher, a nurse or a fireman—at some stage during their training has a module on autism, so that the wider state can really understand the needs of people and their families, and respond accordingly. I look forward to continuing to work with the Government not only on how we can get the waiting times down, but on how we can broaden the quality of the services that we offer to people with autism and their families. Once again, I congratulate the hon. Member for Enfield, Southgate on initiating this debate.
It is an honour to serve under your chairmanship, Mr Howarth. I congratulate my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) on securing the debate.
Like many other Members here, I have met constituents who have talked to me not only about the difficulty of diagnosis, but the importance of getting a diagnosis. I have also heard of the difficulty that both children and adults face when trying to access the services required to support their everyday lives. I stand here today as someone who has worked as an advocate for people with disabilities since 1999—in my previous life—and in our family, my brother and sister-in-law are full-time carers to a young man who is autistic, and the father of my children continues to provide respite for two young men who are autistic, so I am very familiar with the issue of autism.
The story I really want to share today is that of young Mustafa, who will be five years old in October. His parents, Aweis Asghar and Neela Fawad, have had many conversations about the fact that Mustafa was recently diagnosed with autistic spectrum disorder. It took 12 months for that diagnosis and a further six months to have an education, health and care plan assessment by the local authority. At a time when young parents should be enjoying spending time with their only child—getting him to school and doing all the normal things—a diagnosis of autism has a massive impact not only on that family, but on the wider family unit: their work life, home life and everything. They are trying to understand something unique to their child. No two children on the spectrum are the same, and no parents will ever feel the same; they all handle things differently.
Aweis told me this morning that in America an assessor comes to the parents’ house, offers advice and guidance on the world of autism, and understands their child as an individual. Here, parents are left to their own devices. Not everybody has the level of education or the time, because of work pressures, required to do what it takes to get their child the support they need. When they get that support, it is usually from local charities, local support groups and other parents, as opposed to statutory services, which is where the ownership for making those interventions and supporting families should lie. Aweis also told me—we have talked extensively about this—that there are no clear pathways anywhere and that we do not follow the National Institute for Health and Care Excellence guidelines.
I want to ask the Government for a few things today. First, we need to revisit the NICE guidelines and ensure that we put in place the right pathways. We need to understand that every child is an individual and create their care packages individually. Secondly, the Government need to have a consistent approach across the country for every child.
I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous) on securing the debate, and I am pleased to see so many people in the Chamber; it reflects the level of concern about the waiting times for autism diagnosis.
First, I welcome the efforts that clearly are being taken by Governments and local authorities to provide more support for children and adults with autism. Just last week, the doubling of the number of health visitors since 2010 was brought to my attention in my constituency. That has had benefits in supporting young families and, in particular, parents, when their child is not behaving as they expected. There are good things going on, but I want to talk briefly about the gap between the NICE guidelines on waiting times and what appears to be happening on the ground.
When I talk to parents in my constituency, it is clear that their experience does not involve a three-month waiting time. I have several accounts from parents who have experienced much longer waits. For example, one set of parents raised concerns when their child was four. That child is now 10 and they still do not have a diagnosis, despite many professionals seeing the child and indicating that they think that they are on the autism spectrum. In another family, the mother raised concerns when her son was 15 months old and the child was nearly four before she got a diagnosis. During that period, not only did the child regress and go, for instance, from talking to not talking and communicating to not communicating, but a lot of concern was raised about the mother’s mental health. Rather than her being given support to look after the child, it was all about whether she had mental health problems. She went for all the support that she could get, but it very much felt like the focus was not on supporting the child. I have a whole raft of such stories.
We are very short of time, so I had best press on.
I draw on examples in part because we do not have regional data on waiting times. I asked the local clinical commissioning group and was told that it does not have easy access to those data, so I do not know what the waiting times are—I just have stories that make it clear that they are extraordinarily long. My first request is therefore for more transparency about the data, as well as addressing the problem of parents saying that they are waiting to wait—that is, that they are being passed from one list to another. Let us have transparency. Let us have people who are waiting getting seen sooner and then, following the diagnosis, let us have really good support services, because the story is very patchy in that area, too.
I congratulate my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) on securing this important debate.
Waiting frustrates us all. Waiting for a bus, one might have expected it in just 10 minutes or so, and it is frustrating to have to wait a bit longer. Waiting to speak in a debate, it sometimes takes many hours to be called —thankfully, not today. But how long should a parent wait if their child is not making friends, has difficulty communicating their needs, avoids eye contact and likes lining things up, and if they think that that child might have autism?
I mentioned on social media last week that I was going to speak in this debate. I have had more than 500 responses from people, each one telling me their story. Nichola has been told that she has to wait three years for her son to be assessed; Eleanor has been told she will have to wait four years for her daughter. Jodie-Marie said that that for her son it was two years, for Louise it was two years and for Janine it was three years. Leigh has a child who was referred last year and been given a first diagnostic appointment in June 2019.
Delays leave many families unable to obtain the education and social support they need, and mean that during the crucial years of child development children are not receiving optimal care. Stuart Dexter leads autism support charity Daisy Chain in the constituency of my hon. Friend the Member for Stockton North (Alex Cunningham) and is in the Public Gallery today. He lives and breathes such stories of frustration every day.
Stuart told me that parents cannot understand why in Middlesbrough assessment takes four months to begin but in Stockton, the town next door, it takes three or four years. The two towns are next to each other and work with the same mental health trust, but have two completely different experiences of care. I can tell those parents why: there is no central leadership of the process, no measurement and no targets, and responsibility is fragmented. Local authorities and CCGs are not working together properly, and the staff delivering assessments work for four different organisations.
On behalf of hundreds of people in Stockton South living with autism, I will ask the Minister two questions. We all come into politics to make a difference and they are not party political. Will she include indicators on diagnosis waiting times in the mental health services data set, to measure how long it takes for people to get diagnosed? Will she commit to introducing a waiting time standard for autism diagnosis and to including it in the CCG improvement and assessment framework, setting a target for maximum waiting times? Those actions might seem small but they could be a huge and welcome leap forward in creating a diagnosis process that is fit for purpose. If they were included in the NHS mandate for 2018-19, we could make a massive difference for thousands of families.
Order. It might be helpful to announce that the three Front Benchers have generously agreed to cut their speeches to give us an additional six minutes. I will therefore be calling the Front Benchers from 10.36 am. Do the maths and try to accommodate all of your colleagues.
It is a pleasure to serve under your chairmanship, Mr Howarth, and I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous) on securing the debate. I also congratulate the new Minister.
I have learned a lot about this issue from my local and national charity in Harlow, PACT for Autism, which does remarkable work for families. It has been made clear to me that, although there is help out there, as described today, the diagnosis process is incredibly complicated and goes on for years. A case in Harlow sums up everything that has been described:
“My son is 7 and we are going through the very slow and frustrating process of getting a diagnosis for ASD. We are a year into the process and…we have had 1 appointment with a paediatrician who confirmed he had High Functioning ASD and told us that she would see us in a few months to complete the background and then he would be diagnosed. She then backtracked and he has been put on a waiting list (9-12 months) for CDAC—I don’t even know what this is and I’m assuming that after this we will be put on a waiting list for ADOS which we have been told is a minimum of a year. My husband spoke to her yesterday because we have been waiting for over a month for the outcome letter from our appointment. She told my husband that we would be better getting a private diagnosis and then the NHS would rubber stamp it. I am feeling a bit lost—there seems to be no clear process and I am not sure what I need to be asking the NHS for.”
The average waiting time for an autism diagnosis has been described as being between 2.5 and 3.5 years for children and 2.5 years for adults, which is far too long. It hurts parents, who are incredibly anxious to support their children; it hurts schools, which will not be receiving the funding they need to help their students reach full potential; and it hurts the children themselves, whose struggle to understand themselves and their autism may lead to mental health difficulties.
We need to recognise that some individuals with autism do not get a diagnosis until they are adults. I understand from PACT for Autism that it is seeing an increase in contact from adults seeking support because local GPs seem unaware of the diagnostic pathway for adults and are “reluctant” to refer patients. It is also important to consider the support and guidance available to individuals and families during and after diagnosis. The diagnosis process can be complicated, sometimes with no follow-ups from the NHS.
On a positive note, however, in Harlow we are lucky to have some fantastic support in schools such as Milwards primary and Passmores secondary, which have specialist autism units. Recently, I went to the opening of the renewed Milwards autism hub: what is being done there is extraordinary. I pay tribute to head teacher Katherine Henson.
I ask the Government what resources are being put in place to implement and enforce fair waiting times for autism diagnosis, and what guidelines can be put in place to ensure that individuals with autism and their families receive the support they need during and after the diagnosis process. Furthermore, I urge the Minister to visit PACT for Autism in Harlow.
I congratulate my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) on securing the debate and all the parents and voluntary groups who have clearly been galvanised and got so many Members to be in the Chamber this morning. That is a real tribute to them.
I will write to the Minister with my local examples of families with difficulties, but I want to bring the particular attention of the House and the Minister to a decision of my mental health trust, South West London and St George’s, and of the Merton CCG. Under pressure from the doubling of the number of referrals for autism assessment, the trusts decided simply to restrict the ability to refer. To combat the demand for diagnosis, they suggested that only those children displaying mental health problems would begin the diagnostic process. As we have learned in the debate, however, 30% of autistic children develop no further mental health problems. Girls in particular do not display autism until much later.
If the proposal goes ahead, therefore, a large number of my constituents will be living with undiagnosed autism. On 21 September, the five CCGs—Merton, Sutton, Wandsworth, Kingston and Richmond—will meet to decide whether a formal public consultation is needed. I ask the Minister directly to work with my local mental health trust and CCG to ensure that all those with autism in my constituency are given the diagnosis they need to receive support. They should certainly be involved in any consultation on changing procedures. Furthermore, those procedures should not change in a way that would mean that girls are less likely to receive a diagnosis.
A reduction in the diagnosis of autism in Merton would leave so many of my constituents without the specialist support they need. Such a reduction would be in the interests of no one, whether the individual or the state.
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.
What is so powerful about this debate is that we have heard similar stories from all over the country of what feels like a completely dysfunctional system—stories of families fighting against the system for help for their children. I am always left thinking, “What about those families who don’t have the wherewithal to fight the system and don’t know about contacting their MP for help?” When we get involved, sometimes we can help those families, but what about the families who do not get in touch and do not know how to battle against the system?
One of my constituents is a 14-year-old boy who will wait so long that he will have left school by the time he has a diagnosis. Another is a 12-year-girl who has been pushed from pillar to post between a mental health trust and a community trust because autism diagnosis and mental healthcare are dealt with by two different trusts, for goodness’ sake. I also have a family who paid—with great difficulty—for a diagnosis, but felt dreadful because they knew that many other families are not able to do that.
The need for action is absolutely acute. Why is it so important? We know that early diagnosis and intervention can make a massive difference to life chances. It can give an individual the chance of a happy, good and fulfilled life, and it can significantly improve employment prospects. The employment rate for people with autism is horribly low, yet many have the potential to be great in the workplace, with some help and understanding. A more enlightened approach would save the state a fortune.
When I was the Minister responsible for mental health and autism, I embarked on a process of introducing maximum waiting time standards. We introduced maximum waiting time standards for early intervention in psychosis and for access to psychological therapies. I wanted those standards to be comprehensive across mental health so that there was an equilibrium between mental health and physical health. The need is just as great with autism. As the hon. Member for Stockton South (Dr Williams) said, the Government have an absolute obligation to set a national maximum waiting time standard —not for the first appointment but for achieving a diagnosis—to give families hope. If we do that, we will end the awful postcode lottery and ensure that every child, wherever they live in the country, has the right to an early diagnosis. That would have a massive impact on their life chances and would save the state a fortune.
I congratulate my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) on his speech and on calling this important debate. The things that he and others said about diagnosis and data, and the personal stories we have heard, are powerful and make a very good case.
When I go knocking on doors in Croydon, it is unusual not to meet somebody who has a child with autism—diagnosed or undiagnosed—and who is struggling to get the support they need. Since I have been an MP, several people have come to my surgeries or written to me to ask for help. People with autism face a raft of challenges; as one mother told me on the doorstep, nearly in tears about her struggle to get support for her son, “It just shouldn’t have to be this difficult.” Like the right hon. Member for North Norfolk (Norman Lamb), I fear for the people who do not have the wherewithal to seek out the services that they need.
We have heard about the unacceptable delays people face in securing a diagnosis and the impact that has on them. Parents have told me of the huge relief of getting a final diagnosis and the impact that has on their family. We have all seen the Public Health England survey that found that the median waiting time between referral and first appointment is 16 weeks, but in some areas it is far higher. In one local authority, the average wait is 125 weeks. Something clearly needs to change. I welcome calls for a commitment on NHS recording of diagnosis waiting times, and I hope that the Minister is able to make that commitment.
Early diagnosis is clearly vital, but diagnosis must be accompanied by a comprehensive set of early-stage services and proper funding. Three problems are impeding my constituents. The first is funding. The Government of course have the job of deciding how resources are distributed to local authorities, the NHS and other agencies. Croydon Council’s funding will be cut by 75% between 2010 and 2020, and it will have to make cuts of £45 million in the next few years. The impact of those cuts cannot be overstated. Croydon is doing what it can. Councillor Andrew Rendle, who is here today, is the council’s autism champion and chairs the autism partnership board. There is joint commissioning between the CCG and the council, which work in the same building. That has allowed them to address some of the challenges they face, but it would be wrong to say that funding is not a problem.
The second issue is education. Croydon has a high number of autistic children. Schools will continue to be the primary point of contact, yet several years after the introduction of a new special educational needs and disability system, the National Autistic Society reports that 74% of parents nationally have struggled to get the educational support that their child needs. There are worrying signs in my constituency that some academies are increasingly excluding children rather than engaging in the support that they need.
The final issue, which has been brought to me several times, is access to benefits for people who are unable to work. I have heard from several families who were refused personal independence payment but appealed and won their cases at tribunal. Constituents point to inefficiencies and lack of communication between agencies. I welcome this debate and I hope that the Minister will take action.
Thank you, Mr Howarth, for giving me the chance to say a few words about this important matter. I thank my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) for calling this debate. I have a personal interest in this issue: my eldest son has autism, which I have had to learn about, live with and adapt to throughout my life as a parent. My first ever Westminster Hall debate, back in 2010, was on this very subject. From there, I got involved in the all-party group on autism, which is now ably chaired by the right hon. Member for Chesham and Amersham (Mrs Gillan). I also thank the hon. and learned Member for South Swindon (Robert Buckland). He is now the Solicitor General and cannot participate in the debate, but he has been a great champion and friend on these issues.
This is an absolutely crucial issue. People reach out to me all the time because they know that I am a parent of an autistic child—they have seen things in the media or they have looked up the work of the all-party group. People from outside my constituency have even turned up to my surgeries to try to talk to someone who they think can help and can try to guide them through the process, which is extremely difficult for a great many people. A child being diagnosed with autism is just the beginning of a difficult journey—people in that position have to cope with a whole range of things—but diagnosis is crucial. It is the pathway to intervention and help, and so many children have co-occurring mental health problems alongside autism that, to have any hope of addressing those, we must surely begin with the process of diagnosing autism.
We have all seen the figures. People are simply waiting too long—an average of three and a half years for children and two years for adults. Until recently, people in my constituency told me that they had to travel to Sheffield for an appointment for an adult autism diagnosis. I find that incredible, given the service provision that we should have in an area the size of Greater Manchester.
As my hon. Friend the Member for Stockton North (Alex Cunningham) said extremely well, all that contributes to a culture of making parents fight for the support that they need. It creates warrior parents, who have to struggle against the system when the system should be there to support them. The Government aspired to change that through education, health and care plans, but I cannot say with any honesty that they have succeeded. We have not yet achieved that cultural shift. I do not say that with any partisanship; I know that a great many colleagues want to work towards that. I had a lot of time for the former Minister, Edward Timpson—he lost his seat in the election—because of his work on this issue. We really must address it, and people on both sides of the House have that aspiration.
My hon. Friend the Member for Enfield, Southgate called for a primary care register. That absolutely should be the starting point, but I am clear that I want minimum national waiting times for diagnosis for autism, which a couple of Members have already mentioned. That is the only place we need the policy framework to get to, and given the support we have heard today, which parents like me up and down the country will sincerely appreciate, I believe we can get it there.
I thank my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) for bringing this important debate here today. Like many others, I have many constituents who have contacted me and highlighted the effect that delays in diagnosis can have. The process is often a long and confusing experience for the child and a source of great stress for parents, carers and family members. My work with children and young people during my previous role within the local authority has given me a really good understanding and great insight into the huge gaps that children and families face. Delays in obtaining diagnosis vary widely from child to child and from area to area.
As others have done, I will read out a statement from a constituent; she has two autistic children. Debates such as this are for hearing directly from those affected. This is Katy, who said:
“My first child had a reasonably short period of assessment lasting 12 months, but my youngest son is just beginning the process and we have been advised that it could take up to three years. As he is nearly three, he would be expected to go onto a school place and as such could potentially struggle and fall behind.”
They will not get access to an education, health and care plan, and
“he will not be accepted into a SEN school without this diagnosis.”
How is it right for her and her son to go through the agony of not receiving appropriate care due to the assessment process? That process has a huge impact on children being able to access the schooling environment and support they need.
I want to illustrate this. A constituent has a son, Sam, who is seven years of age. They have been waiting a considerable length of time—months and months—and no longer know what to do or how long to wait. They came to me in frustration. With no diagnosis, there is no EHCP, which means no provision, as hon. Members from across the Chamber have said. They must battle on and on.
That is exactly the point that we have all been raising. As mentioned by many here, people have gone through their entire lives without being diagnosed. In some cases, that does not present a real issue, but for others it presents decades of being misunderstood and misdiagnosed with other conditions.
Dawn is another woman in my constituency. She had spent all of her life being treated differently and feeling ill at ease with all that went on around her. This year, she was diagnosed with autism at the age of 46. She said to me that now that she understands her condition, the world makes sense. Dawn and many like her are determined to make a difference. She is exploring ways in which she can help and support other adults in the same situation and to advocate for better understanding of the condition. I applaud Wigan Council, because it understands the gaps and wants to bridge communities, businesses and other public services to create that better understanding for people affected.
I urge the Minister to ensure that the process of diagnosing and supporting people with autism is consistent across the country, with that process informing and supporting all public services and the wider community, and that the latest recommendations and resources are allocated at the earliest opportunity to support the individual’s needs and promote better outcomes for all.
I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous). When I think of families who deal daily with children who need that little bit more attention, I often wonder just how they do it. Many are doing it alone, with no help or coping strategies available to them as they await diagnosis.
Minister, we are stating facts, not pointing the finger, but the National Autistic Society highlighted that diagnosis can be a critical milestone for people on the autism spectrum. Of those who responded to its survey, 61% said that they were relieved to get a diagnosis, and 58% said that they got new or more support. It is therefore important that people with suspected autism are able to access timely diagnosis, wherever they are in the country, and that they get appropriate post-diagnosis support.
My knowledge of autism comes directly from contact with my constituents, based on benefit applications, the help that they need and the appeals process. I want to give an example that comes from the people—the mothers and children—whom I represent. There is an autistic boy; I will not name him or his parents. His parents do everything for him. They wash him, dress him, cook for him and feed him. They bathe him and take him to the toilet. They amuse him, they hug him and they kiss him. They love him. They do all those things, and when he is at school and they are not doing that, they wash, iron, clean, shop and find time to pay the bills. They do everything they can for their son in every part of their life, but love is not enough to get the family through the sheer exhaustion and emotional and mental strain that is part and parcel of life with someone with special needs.
As elected representatives, we in this Chamber must do more to support those people and offer them the best that society can provide, to ensure that they do not reach the point of no return. The waiting times for diagnosis are shocking. In Northern Ireland, 2,079 children are waiting for diagnosis, and some 7,100 have been diagnosed. We have a duty to ensure that the mechanisms for diagnosis and support are there. At present, we are failing, and in this timely debate there is an opportunity for all of us to take a fresh look at how we can do things differently and more effectively.
It is a pleasure to serve under your chairmanship, Mr Howarth. I will rattle through this to give others a better chance to speak. I should mention that I have been on Twitter, talking to someone in Scotland who is watching the debate with great interest because she has four children with autism. I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous) on obtaining the debate and congratulate everyone who has spoken so well and passionately during it.
In 2011, the Scottish National party Scottish Government launched a national strategy for autism, and they updated it in 2015. Some of the work done has included working with the Autism Achieve Alliance to produce action research that provides evidence to address waiting times for diagnosis. Things are not perfect in Scotland, but we have some advantages in being a smaller country. There are also plans to provide leadership for an improvement programme across NHS Scotland to improve diagnostic capacity, which we all agree is vital.
Scottish Autism worked in partnership with the Government to develop a web-based autism toolbox to improve accessibility to resource in schools across Scotland. Crucially, it also piloted one-stop shops for autism across Scotland. That is where I got involved. There was one in my constituency and, when the pilot programme ended, the local authority did not continue the work, so many families in my constituency were left bereft, with a much less comprehensive programme and much less support for families and people with autism.
I should pay tribute to the Minister for Childcare and Early Years in Scotland. He has a son with autism. He has done a lot of work, which has led to a number of things, such as Aberdeenshire Council’s national recognition for autism friendliness. He has piloted film and theatre programmes and shopping nights in shopping malls especially for people with autism, all of which help to improve the quality of life of those affected and their families.
In Scotland, as I have said, we have seen excellent work. We really want to make all people with autism live as independent lives as possible. As has been said repeatedly, diagnosis is vital for that. It gives such comfort to people with autism to know what is “wrong” with them. Once they know that, that allows them to see life in a different way, through their own eyes. I saw that when I taught in further education colleges.
The See Me initiative in Scotland has been important in showing people to look at people, not at conditions. I commend the Scottish Government for that initiative, on which they spend £1 million a year. That programme, which helps people to look at others and understand that they have issues—it is not that there is anything wrong but that they have difficulties in normal life—is mainly linked to mental health issues, but it helps people with autism as well.
There is still much work to be done, and the Scottish Government are trying to move towards better joined-up mental health. I know, and it has been said already in the debate, that autism is not a mental health issue, but it can foster mental health issues, so we need to look at how services in Scotland are joined up, and the transition from child to adult mental health issues.
Finally, I congratulate everyone who spoke so well and passionately in the debate. I would never have known anything about this subject had I not been forced to listen to constituents who lost their one-stop shop and the support that they so heavily depended on. They have other support, but they tell me that it is not nearly as good.
It is an honour to speak with you in the Chair, Mr Howarth. I very much congratulate my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) on securing the debate. It is an important one because, as we have heard, diagnosis is the vital first step towards getting support for people with autism.
For children with autism, and their parents, getting a diagnosis is the first hurdle that they need to get over, to secure the support and education to which they are entitled. As my hon. Friend the Member for Enfield, Southgate mentioned, the NICE quality standard on autism recommends that people should wait no longer than three months once they are referred for their first diagnostic appointment. It is clear that people have to wait too long for a diagnosis of autism and that the waiting time can be gamed by delaying later appointments. Waiting to wait is not acceptable.
We heard that research has shown that waits can be two years for adults and three and a half years for children, but we have also heard of examples where things have taken much longer. We touched earlier on the Public Health England survey and the fact that in one local authority it is admitted that there are waits of 125 weeks. Hon. Members have spoken powerfully about long waiting times and their constituents’ experiences—and their own, in the case of my hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds).
I was contacted by one of my hon. Friends who could not take part in the debate, and want briefly to refer to the experience of one of her constituents. When her son was 18 months old, he suddenly stopped talking. That was raised with the health visitor at the child’s two-year review. The health visitor almost did not make a referral to a speech and language therapist, saying that the criterion for referral was that a child could say fewer than 10 words. At that time, the little boy could say only one word: “No”. It took a nine-month wait to get a first appointment with a speech and language therapist. At the second appointment, six months later, she said she would refer the child to a paediatrician. In the end, it took almost two years to get a diagnosis of autistic spectrum disorder from the paediatrician and the speech and language therapist working together.
Since then, the child has been discharged from speech and language therapy, despite the fact that he is still not speaking. His parents have had to get therapy for him privately, paid for with his disability living allowance money. The child spent half his young lifetime—from age two to age four—without the support that he needed to help his development. The mother says she felt
“let down by the system”,
but also that their family was one of the lucky ones, because, as we have heard, other parents had to wait longer to get a diagnosis. The issue for her was
“the lack of availability of professionals…had we seen professionals when appointments were due I think it would halve the time to get a diagnosis”.
Delays in diagnosis can hinder the implementation of effective support and intervention strategies, but they can also—understandably—lead to parents losing confidence in healthcare professionals, particularly if they feel that appointments and waiting times are being gamed in the ways we have heard about. By contrast, surveys have shown that a positive diagnostic experience is associated with lower levels of stress and more effective coping strategies, which is what we are talking about giving to families, if waiting times for diagnosis can be cut. For adults with autism, a diagnosis can end years of feeling misunderstood and isolated. We have heard about an increased risk of suicide.
A number of Members raised the point that autism diagnosis waiting times are not currently collected as part of the mental health services data set. I understand that the National Autistic Society has worked with the Government on proposals to collect those data. Will the Minister confirm to the House today that the Government plan to commit to the routine recording of diagnosis waiting times from April 2018 and, importantly, tell us what plans they have to speed up the diagnosis process? NHS England does not currently collect data on the number of diagnoses or who is being diagnosed with autism. That makes it difficult to determine where there are gaps in diagnosis. The National Autistic Society says that between 75% and 80% of people who use their adult services are male. However, as my hon. Friend the Member for Enfield, Southgate said, there is concern that there is under-diagnosis of women and girls, who are not getting the support they need.
Likewise, the first generation of people diagnosed with autism are now reaching middle age. That means there is a generation of people for whom autism was not a diagnosable condition during their youth. There could be significant gaps in autism diagnosis among older people. We heard in the debate of a lady diagnosed only in her 40s, and it is important that our focus should not always be on children. I find it heart-rending to think about cases such as the one I outlined, but it can also be difficult for people get a diagnosis when they are older. NICE recently recommended the creation of an autism register so that we can identify areas where autism may be under-diagnosed. Does the Minister agree that such a register might help more autistic people get the diagnosis and the support that they are entitled to? Are there likely to be moves to create one?
An early diagnosis is important. Mental health conditions are more prevalent among people with autism than among the general population. A diagnosis can provide an understanding of why a child finds things difficult and, as in the case that I talked about, suddenly stops speaking. If there are signs of mental health issues or other problems, a diagnosis can make family and friends aware and open access to proper support. However, post-diagnosis support is not always there. A survey of parents with autistic children found that many are left with no support during and after the diagnostic process, and many are not signposted to other advice and help. That is clearly important; there is a feeling of their being warrior parents and battling parents. Let us stop their having to do that. Some are even left without a written report of their child’s diagnosis.
In the example that I outlined, the four-year-old child is still not speaking but has been discharged already from speech and language therapy services, and his parents can obtain therapy for him only privately. What plans are in place to ensure that people who receive a diagnosis have access to the services to which they are entitled, and which their children need? Let us, from now, help the warrior parents and battling parents, and all the people who need a diagnosis to move ahead with their lives.
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.
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?
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.
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.
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?
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.
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.
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.
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.
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.
I very much welcome the Minister’s admission that things are not as they should be and that these are real issues affecting real people. The data are very much to be welcomed and we look forward to their publication in 2019. Transparency and consistency are absolutely vital in this service. I am also very interested in the findings of any inspections by the CQC and Ofsted. Commissioners need to be held to account. We need to recognise that specialists include educational psychologists, speech therapists, psychiatrists and child psychologists. If a maximum waiting time standard is not possible, we should consider putting as much pressure as we can to ensure that diagnosis is made as soon as possible.
Motion lapsed (Standing Order No. 10(6)).