Cancer Strategy

Bambos Charalambous Excerpts

Thursday 22nd February 2018 Commons Chamber

[Dr Cameron]

Absolutely. The hon. Gentleman makes an excellent point. These agencies are working on the frontline with people and families at their most vulnerable and deserve all our encouragement, praise and, of course, funding.

In addition to setting out how cancer alliances are to be funded and supported for the duration of the strategy and into the future, the all-party group strongly recommends that the 62-day waiting-time target be immediately decoupled from any release of funding to the alliances. The previously mentioned issues prevent progress in improving cancer care and treatment, which is not our collective vision. The all-party group also heard that improving transparency in priorities and accountability would help to support the delivery of the strategy. At the moment, a lack of clarity and lines of communication are delaying its implementation. Publishing a detailed progress update on each of the strategy’s 96 recommendations would be a positive step forward.

It is generally accepted that the 62-day waiting-time target has been treated as a higher priority among clinical commissioning groups and cancer alliance leaders than survival or stage at diagnosis, as shown by the linkage between funding and performance against the measure. Decoupling funding from process and target performance in favour of a greater focus on outcomes would strongly be in the interests of patients, not least because, if outcomes are good and survival rates increasing, processes will also be functioning efficiently and correctly.

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

The 62-day target has not been met since 2014, so the issue has been around for a while. Does the hon. Lady agree that more funding is needed if the target is to be met as soon as possible?

[Dr Cameron]

I absolutely agree with the hon. Gentleman. It is essential that the target be met and that resources be put in to ensure that it is.

The all-party group also found that access to detailed and timely data is critical for the strategy’s success, particularly in relation to data for rare and less common cancers. Strong concerns were also raised about how future data protection regulations might affect surveys, such as the cancer patient experience survey. The value of the cancer patient experience survey should be emphasised, along with outcomes from patients. We must hear from those who are experiencing services; they know how to improve things. In addition, the ageing UK population cannot be left out of the conversation. The cancer patient experience survey suggests that older people are less likely to have access to a clinical nurse specialist. Additionally, older patients are less likely to know the full extent of their illness. Age discrimination must come to an end, especially in cancer care.

The all-party group recommends that the NHS and Public Health England’s data team work to produce more timely cancer data and make them publicly available. It advocates that the Government ensure that the cancer patient experience survey and other such surveys can continue in a way that allows patient experience to be considered on a par with clinical effectiveness, rather than leaving patients without sufficient information regarding their cancer and care.

Furthermore, for specific cancers such as breast cancer, there are key priorities for delivery in the cancer strategy. It must ensure that data are collected for people living with incurable secondary cancer; that everyone with secondary breast cancer has a specialist nurse with the right skills and expertise; and that everyone has access to the right support after finishing treatment for primary cancer, so that they are able to live well after breast cancer. We should not ignore the fact that the strategy has had positive effects. In the last year, 16 cancer alliances and three vanguards have been established, and £200 million has been made available to them for earlier diagnosis and post-diagnosis support. In addition, 23 NHS trusts have now received new and upgraded radiotherapy machines. However, as the report makes clear, much more work still needs to be done.

In the few minutes that I have left, I want to speak a bit more about less survivable cancers. The Less Survivable Cancers Taskforce was in touch with me prior to today’s debate. It is made up of Pancreatic Cancer UK, the British Liver Trust, the Brain Tumour Charity and Action Against Heartburn, covering oesophageal cancer, and Core, covering all digestive diseases. The staggering 55% gap in morbidity is absolutely unacceptable. Much, much more must be done. Recently, I lost a very dear uncle to pancreatic cancer. As a family going through that experience, we know that we need much more research and much more specialist understanding. We need investment in those areas—it is absolutely crucial. I want to ensure that other families have a better chance of an improved survival rate, and I pay tribute to my own uncle for his courage in coping with that condition right to the end.

Hospice care is also absolutely essential. We must ensure that families and patients have dignity at the end of life. That is imperative. I have watched far too many family members die in hospital beds, surrounded by other patients with the curtain screens drawn, to know that that is not dignified and that where possible, we must improve services and access to hospice care.

I pay tribute to the Teenage Cancer Trust—we often think of cancer as an illness that affects older people, but young people are also diagnosed with cancer—which does fantastic work. Vanessa Todd in my constituency is an absolute advocate for the Teenage Cancer Trust. Although GPs may not expect a young person to come with such symptoms, which are perhaps not easily identifiable, it is something that we can increase awareness of to make sure that diagnosis is very quick and timely for young people to improve their prognosis.

I thank everybody and, again, I thank the all-party group. It has been a privilege to open the debate for the hon. Member for Basildon and Billericay, who leads the group on these issues so well.

Hospital Car Parking Charges

Bambos Charalambous Excerpts

Thursday 1st February 2018 Commons Chamber

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

I congratulate the right hon. Member for Harlow (Robert Halfon) on securing this important debate.

It is clear from hon. Members’ speeches that the scandal of hospital parking charges must come to an end. Gravely ill people and people visiting relatives while in a state of distress should not be treated as cash cows by hospital car park operators. It is shocking that half of all trusts last year charged disabled people to park in some or all of their disabled parking spaces. We need to address the ridiculous inconsistency whereby hospital parking is mainly free in Wales and Scotland while trusts charge for parking in Northern Ireland and England. It is time that all hospitals abolished parking fees. Drivers must not be punished for being sick, visiting loved ones or attending medical appointments. People do not choose to be ill and should not be asked to pay for a no-choice hospital visit.

Many of my Enfield, Southgate constituents have approached me about this issue. A mother contacted me to say that after her husband took their son to the North Middlesex University Hospital accident and emergency unit with breathing difficulties in the middle of the night, he was later presented with a parking charge notice. I do not believe that people rushing to hospital with gravely ill children should be put into the position of having to worry about such matters. Imagine if my constituent had spent extra precious moments scrambling for change for parking while his son struggled to breathe. Would that have been a sensible and responsible thing for the parent of a seriously ill child to do? Of course not. That is exactly why we must get rid of these charges.

I have also been contacted by a father who had to take his young daughter to the emergency department. Throughout the evening and into the night, my constituent had to leave his daughter to feed more money into the car park meter because she was being kept in for such a long period of time—it ended up being overnight. My constituent kept paying into the machines, which failed to give him receipts when requested, leaving him unsure how much time he had left. My constituent reported seeing other people in various states of distress walking around the car park and seeming unsure of what to do. Two weeks later, my constituent received a notice telling him that he had not paid for all the time that he had been in the car park. Again, we must ask whether this is an appropriate way to treat the parents of very ill children.

We have all heard in the press about desperately ill patients who have been forced to quit work and left with bills for hundreds of pounds due to their frequent visits to hospitals. Then there are hugely unfair cases of NHS staff who have had parking charges deducted from their wages, but then have been unable to get a space and have been fined for parking in the wrong bay. Several elderly constituents have contacted me to say that they face relatively high parking charges for their regular hospital attendances.

This Sunday, 4 February, is World Cancer Day, and many of us know people who have had treatment for cancer. Anyone who knows the effects of chemotherapy will be aware of how debilitating the treatment can be. People often need a carer to help them to make the journey home. Considering the frequency of treatments for cancer and other illnesses, surely car parking charges are nothing more than a tax on the sick. As the hon. Member for Telford (Lucy Allan) pointed out, many people have no choice but to drive to their local hospital due to the infrequency of public transport.

[Liz Twist (Blaydon) (Lab)]

My hon. Friend talks about travel difficulties. Does he agree that reductions in the number of bus services in many areas mean that there is no alternative to parking in hospital car parks? In constituencies such as mine, which has no hospital, that means frequent journeys for people who require treatment.

[Bambos Charalambous]

My hon. Friend makes an excellent point. People in rural areas or who live far away from their local hospitals are unfairly affected by having poor transport networks to ferry them to hospitals, so they have no choice but to travel by car.

The right hon. Member for Hemel Hempstead (Sir Mike Penning) made the excellent point that other emergency workers are not being required to pay to park at their police or fire stations. In addition, hospital staff, by taking up parking spaces, are reducing the number of spaces for patients and visitors. NHS staff should be able to park for free, but they should also be able to afford to live nearer the hospital. It is therefore ironic that we are in a situation in which NHS trusts are forced to sell land that could have been used to house NHS staff locally.

Another pressure on North Middlesex Hospital has been the fact that the closure of the accident and emergency unit at Chase Farm has resulted in far more visitors to its A&E unit. Those additional visits meant that, between Christmas and new year, the hospital ran out of acute beds. One can only imagine how busy the hospital car park was during that period.

Many hon. Members have made excellent contributions about the need for the Government to abolish car parking charges. It is time that those unfair charges were scrapped and the NHS properly funded. For the sake of NHS staff, parents and visitors, I ask the Minister to bring forward measures to scrap car parking charges as soon as possible.

Misuse of Xanax

Bambos Charalambous Excerpts

Monday 15th January 2018 Commons Chamber

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

Until five months ago, I was oblivious to the existence of the drug Xanax. It was only after I was contacted by a concerned mother that I became fully aware of the problem that is going on right under our noses. I am holding the first debate about Xanax in Parliament to raise awareness about a problem that could be widespread.

Xanax, or alprazolam, is a sedative from the benzodiazepine family of drugs. It is physically and psychologically highly addictive. Its sedative effects start 15 minutes after consumption and can last for between 10 and 20 hours. When it is taken with alcohol, the impact is multiplied, and one of the side effects is memory loss.

Xanax is licensed in the UK, but it is not prescribed on the NHS. It can, however, be prescribed privately by a doctor. Unsurprisingly, it is hardly ever prescribed in the UK, but it is widely available and prescribed to treat anxiety and panic attacks in the United States of America. It is reported to be the eighth most prescribed drug in the USA. Popular culture is glamorising the drug and creating curiosity and demand in the UK, and the drug is available online for as little as £1 a pill. It is causing a problem that seems to be spreading. That brings me back to my initial interest, which was the result of some casework I picked up in my constituency.

A concerned mother told me about how her 14-year-old daughter—I will call her Zoe for the purposes of this debate—had become a regular user of Xanax and how this had, in just five months, resulted in a downward spiral leading to Zoe’s permanent exclusion from school. This is Zoe’s story.

Zoe was a bright and popular girl and had a wide group of friends when she started at a local secondary school in 2013. As is sometimes the case with early teenagers, Zoe had some fallings out with her group of friends and was eager to do exciting things. In July of last year, Zoe and her best friend were approached by an older girl at school and introduced to an ex-pupil whom they started hanging out with, together with a group of slightly older people, some of whom were adults. Zoe and her friend started going to private raves with the crowd and to parties in houses across north London where, swept up in the whirl of the excitement of this new lifestyle, Zoe was introduced to Xanax.

Throughout July and August, Zoe and her best friend would be out regularly with this crowd, taking Xanax, mixing it with alcohol, and getting sedated and into a zombie-like state. On some occasions, Zoe would come home from a night out with marks and bruises on her arms and legs, and no recollection of how she got them. At best, she had a hazy notion as to what had happened. One of the side effects of Xanax is amnesia, and there is always a risk that users become extremely vulnerable to abuse when under the influence of the drug, and although there was no certainty about whether Zoe was sexually abused, the concern was there.

Over the summer Zoe had completely transformed. Her mother, like most parents, was absolutely horrified at the change in her daughter since she started hanging around with this new crowd. She started rowing with Zoe. On one occasion, with Zoe under the influence of Xanax, she tried to stop Zoe going out. Another side effect of Xanax is aggressive behaviour, so, in addition to the normal behaviour that teenagers express when rebelling against their parents, in this instance Zoe physically and violently attacked her mother, leaving her with bruises on her arms and legs. Zoe then ran out of the flat. Zoe’s mother was desperate and frightened, and had no option but to call the police to restrain her daughter. At the same time, she rushed out barefoot into the street to make sure that Zoe came to no harm, and watched in horror as Zoe stepped out in front of cars and a bus. The police came quickly and arrested Zoe, which seemed to calm the situation down; no charges were brought. The next day, after spending a night in the cells, Zoe had no recollection of what had happened, nor of her arrest.

The problems continued. Zoe’s mother discovered that Zoe and her best friend were visiting various houses across north London where kids were taking drugs and drinking. Zoe’s mother then found out some of the names of the older people Zoe was mixing with. It transpired that some of those people were known to the police. With the help of the police, Zoe’s mother managed to get abduction warning notices served on six people so that they could be arrested if they were found to be associating with Zoe. An even more worrying discovery by Zoe’s mother were some baggies—small plastic bags used by drug dealers for neatly holding small amounts of drugs—hidden in Zoe’s bedroom. Zoe was now hiding things for her new friends.

In conversations I have had with the NSPCC, its staff have told me that Zoe’s behaviour is typical of someone who is being groomed. Zoe had been cut off from her school friends and had been warmly embraced by this new crowd, who promised excitement. Having been initiated, she was now doing favours for them. Zoe was now at risk of being exploited by people who were drug dealers, whom she regarded as her new friends.

Despite Zoe’s mother’s heroic efforts, Zoe continued to find ways of accessing Xanax. Things took a turn for the worse when, in September, Zoe and her best friend were found to be high on drugs in a zombie-like state, with dishevelled clothes and messed-up hair, on the school premises. As anyone who has a connection to a school will know, being drunk or intoxicated by drugs on school premises leads to a permanent exclusion. Despite this and after being implored not to exclude Zoe, the school allowed her to stay on and some support services were provided for her.

The pressure on Zoe’s mother was unbearable. She was so desperate and struggling to manage that she asked the local council if it could step in and find temporary foster parents for Zoe. Zoe was placed in foster care for just over a week. Although that seemed to shake her up, she was soon back to her old routine when she returned home. Despite Zoe’s mother and the school trying their best to help, Zoe was still able easily to get hold of Xanax, which was being peddled by a dealer from a booth in a McDonald’s restaurant two minutes away from the school. At £1 a pill, it was well within what is affordable to some young people. To make matters even starker, the McDonald’s is next to a police station. All the information that had been pieced together was passed on to the police. Following pressure from the school, Zoe’s mother and me, in December the police arrested three people on drug-related charges. This was not, however, before Zoe and her best friend were found to be drunk on school premises and then permanently excluded from school.

Zoe’s case is not the only one of its kind. On researching the subject, I discovered that on 9 May 2017, some 20 15-year-olds and 16-years-olds were taken ill in Salisbury, Wiltshire and received medical treatment after taking Xanax. A further eight young people were hospitalised in Sussex over the Christmas period after taking the drug, and in Scotland in the past month there has been an unconfirmed cluster of deaths from people injecting Xanax. Since securing this debate, I have been informed by hon. Members of further cases of Xanax abuse that have resulted in the hospitalisation of teenagers. Data about how widespread the misuse is of Xanax is patchy at best.

Last week, I met King’s College London’s emeritus professor of clinical psychopharmacology, Malcolm Lader OBE, who has over 50 years’ experience of working in this field. He told me more about the effects of Xanax. He said that Xanax was a powerful benzodiazepine which, if overused, could lead to a constantly dazed, zombie-like state and cause amnesia, depression, psychiatric disorders, rage and aggression. Taking it with alcohol would result in faster metabolism absorption of the drug and an amplification of the symptoms. He added that it was highly addictive—more difficult to come off than heroin—with prolonged psychological and physical reactions of muscle tensions, tremors, and perception disorders in relation to light, sound and noise. He added that in serious cases of overdose, it could lead to death due to slowing down of the heart and breathing problems.

So why has Xanax become so popular recently? Apart from being cheap—I mentioned that it is being sold for £1 a pill in my constituency—and just a click away on the internet, it has been glamorised in American rap music. The rapper Future has referred to Xanax in songs such as “Xanny Family” and “Perkys Calling”. Lil Uzi Vert has done the same in his song “XO Tour Llif3”, also known as “Push me to the edge”, which, as of today, has been viewed 147 million times on YouTube. The artist 6ix9ine, who has over 1.5 million Instagram followers, often makes references to Xanax in his songs, as does Lil Wayne, such as in his song “I Feel Like Dying”. The list of rap songs mentioning Xanax, or “Xannies”, is endless. I wish to thank my nephew Alex for enlightening me about rap music.

[Alex Sobel (Leeds North West) (Lab/Co-op)]

This is not a new issue. Body Count, rapper Ice-T’s rock band, sang in their 1997 song, “Dr K”:

“Need some (X)anax…want some pills..I want the grim reaper as my guest!”

Ice-T’s social commentary was a way of getting to the heart of the issue 20 years ago. Does my hon. Friend agree that some rappers, like Ice-T, do not glorify Xanax but give the grim reality?

[Bambos Charalambous]

My hon. Friend makes an excellent point. I am about to come on to how some rappers have been dealing with the issue of Xanax in a very different way.

Some rap artists have even allowed themselves to be filmed in a zombie-like state, after claiming to have taken Xanax, before they eventually lose consciousness. But even in the world of American rap, things are changing. On 15 November 2017, American rap artist Lil Peep bragged about taking six Xanax pills on camera. Hours later, he was found dead on his tour bus as the result of an overdose. The clip of him bragging is still available for all to see on YouTube and other social media. Following the death of Lil Peep, the rapper Lil Pump, who previously had a song called “4 Xans” and other songs with references to Xanax, and who had posed for a picture with a Xanax cake to celebrate achieving 1 million followers on Instagram, announced on new year’s day that he would no longer be taking Xanax. Three-time Grammy winning artist Chance the Rapper has also been candid about his addiction to Xanax up until 2014. He told his 6 million Twitter followers—I am paraphrasing—that Xanax was the new heroin and not to be fooled. He has gone on to do interviews where he talks about the damaging effects of Xanax on him and his recovery from addiction.

Whether this is a matter of art imitating life or of life imitating art, the problem is certainly a real one in the UK. Having questioned adults over the age of 30, I found that very few had heard of Xanax, yet those who are younger, ranging from 12 to 24 years of age, had heard of it and would sometimes mock my ignorance and that of their parents. At the older end of the range, users are self-medicating with Xanax to ease their anxiety.

The truth is that there is a cultural and age divide, and whatever the reason, the fact remains that Xanax is certainly the drug of choice for some young people. It may be because it helps to numb the pain, because it is a fashionable drug, or because it is cheap and easy to get hold of—I can only speculate—but what I do know is that not enough is being done about the problem, which I believe is likely to get worse. Xanax is the drug of choice for the young generation. If steps are not taken now to tackle the problem, we will suffer the consequences both in the cost to the NHS and in personal tragedies.

Although it is pleasing to find that Xanax is the No. 1 news item on the Government’s “Talk to Frank” website, which is designed to be accessed by young people, much more needs to done. In the United States of America, abuse of Xanax is endemic and even some of those who were legally prescribed Xanax are dependent on the drug.

There is widespread ignorance of Xanax among the general public. There is very little, if any, research into or data on the misuse of Xanax and the reasons people use it, and very little is being done for those dependent on it. There are also enormous pressures on children’s and young people’s mental health services. There is a mental health crisis in our classrooms, and funding for child and adolescent mental health services has been cut. There is a window for early intervention, and that is key because half of all mental health problems are established by age 14 and three quarters by age 24.

If the Government want to do something about the problem, I would strongly suggest that they do three things. First, they should be running campaigns to raise awareness of the dangers of misusing and abusing Xanax to inform the public. The lack of knowledge about Xanax and its side effects is startling. Secondly, they should be providing more support, via specialist drop-in centres, for young people who develop a dependency on Xanax. They should not be relying on existing addiction centres because adult drug and substance misuse services are not appropriate for young people. Children and young people’s mental health services also need to be better resourced to cover this need. Thirdly, the Government should commission, carry out and publish research into the prevalence of Xanax use and its effects. We do not know how big this problem is nationally, yet we know that young people are attending local A&E units suffering from the effects of Xanax.

Those three actions will go some way to help to alleviate some of the immediate problems caused by Xanax. They will not help Zoe, who has been robbed of six months of her life with potentially life-changing consequences, but they may help others, and that is something that we should all be striving to do.

NHS Winter Crisis

Bambos Charalambous Excerpts

Monday 8th January 2018 Commons Chamber

[Mr Dunne]

I am pleased that my hon. Friend welcomes the extra money provided in her area. I can confirm that once this winter period is behind us, we will absolutely look to learn lessons on what works best in ensuring that we get patients seen to as quickly as possible.

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

Is the Minister aware that on six of the seven days after Boxing day, all of north Middlesex hospitals’ general and acute beds were occupied? Does he agree that this state of affairs is totally unacceptable, that more investment is needed in our emergency health services and that much better planning is required for any future winter crisis?

[Mr Dunne]

I confirmed to the House at the beginning of my remarks that we believe that planning is essential. We started planning for this winter at the end of last winter, and I expect that we will continue to do so for the coming winter. As for what happens in individual hospitals with the individual pressures that they have, it is down to the local NHS leaders and clinicians to determine what capacity they need, and they need to plan for that, too.

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)).