Autism Diagnosis

Bambos Charalambous Excerpts

Wednesday 13th September 2017 Westminster Hall

[Bambos Charalambous (Enfield, Southgate) (Lab)]

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.

[Nick Thomas-Symonds (Torfaen) (Lab)]

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?

[Bambos Charalambous]

My hon. Friend makes a valid point: consistency is required across the range.

[David Simpson (Upper Bann) (DUP)]

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?

[Bambos Charalambous]

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.”

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

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?

[Bambos Charalambous]

My hon. Friend makes an excellent point about the need to support families and carers, and it sounds as though Aim Higher is doing a fantastic job in her constituency. I congratulate it on doing a much-needed job.

[Rachael Maskell (York Central) (Lab/Co-op)]

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.

[Bambos Charalambous]

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.

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

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.

[Bambos Charalambous]

My hon. Friend makes an excellent point. One of the areas I referred to previously was the need for the 2009 Act to be reviewed by the Secretary of State. Perhaps that is the way forward, but I await the Minister’s response.

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

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.

[Bambos Charalambous]

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.

[Gareth Johnson (Dartford) (Con)]

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.

[Bambos Charalambous]

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.

[Norman Lamb (North Norfolk) (LD)]

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.

[Mr George Howarth (in the Chair)]

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.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

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.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

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.

[Bambos Charalambous]

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.

[Laura Smith (Crewe and Nantwich) (Lab)]

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?

[Bambos Charalambous]

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.

[Liz Twist (Blaydon) (Lab)]

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.

[Bambos Charalambous]

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.

[Margaret Greenwood (Wirral West) (Lab)]

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?

[Bambos Charalambous]

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.

[Mr George Howarth (in the Chair)]

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.

--- Later in debate ---

[Bambos Charalambous]

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)).