Brain Tumours in Children

Dominic Raab Excerpts

Tuesday 3rd September 2013 Westminster Hall

[Mr Dominic Raab (Esher and Walton) (Con)]

Thank you, Mr Sheridan, for calling me to speak; I believe that this is the first occasion that I have spoken under your chairmanship.

I have to say that on this particular topic I come as something of a novice. I was regrettably unaware of many of the basic facts about children in Britain who are afflicted by brain tumours until recently, when I was approached during the summer by a constituent, Anne Pickering, who is here in Westminster Hall today. On a family holiday to the Isle of Wight in 2008, Anne’s daughter, Charlotte, collapsed on a beach as a result of a brain haemorrhage. Charlotte was rushed to Southampton general hospital. She underwent surgery, she remained on life support for 10 days and she lay in a coma for five weeks. Later she spent five months in rehabilitation at the amazing Children’s Trust in Tadworth and this courageous young woman, who is now 16, has made a full recovery.

I should say at this point that I have been down to the Children’s Trust to see for myself the incredible work that it does. Witnessing the tenacity of children with serious brain injuries from tumours, haemorrhages and various other illnesses making the long, hard and often uneven road to recovery is like watching someone crawl a marathon, inch by inch. It is nothing short of heroic—both heartrending and uplifting at the same time—and what is achieved at the Children’s Trust is quite something to behold.

However, the truth, of course, is that not all such stories end as well as Charlotte’s did. During Charlotte’s treatment, her mum Anne met Sacha Langton-Gilks, whose son, David, was fighting a brain tumour that had been diagnosed late. Despite David’s herculean efforts, he died aged 16. All anyone has to do is to google his name to read the many accounts of this lad’s epic bravery. David was diagnosed with a tumour the size of a golf ball on 24 October 2007. He struggled for nearly five years, through chemotherapy, radiotherapy and a stem cell transplant, stoically refusing to give up on life, whether it was reading up on Buddhist philosophy or tobogganing in the snow with his brother and sister. The term “inspirational” does not even begin to do this young man justice. Very sadly, David died on 14 August last year, but not before he stood up in front of the full glare of the national media, despite his terminal diagnosis, in a valiant effort to raise awareness of the prevalence of brain tumours in children, in order to save lives.

[Neil Parish (Tiverton and Honiton) (Con)]

It is great that my hon. Friend has been able to secure this debate. Early diagnosis is vital, and there are charities such as the Brain Tumour Charity, which runs the HeadSmart campaign, and others that are working along with the Government to try to ensure that professionals are aware of brain tumours at a very early stage, because the sooner they can be found the sooner people can be cured. I have constituents who have been affected by tumours.

[Mr Raab]

I thank my hon. Friend for that intervention. He is absolutely right, and what we must do is to keep pushing the HeadSmart campaign to move it along even further.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Gentleman give way?

[Mr Raab]

I will just make a small amount of progress before giving way, because I do not want to give a disjointed account.

David’s case is tragic and moving, but it is not a one-off; that is why we are here in Westminster Hall today. The cases I have mentioned are not isolated incidents. Each year, 500 children are diagnosed with a brain tumour and brain tumours take three young lives every fortnight. Brain tumours kill more children in this country than leukaemia does; only traffic accidents take more young people’s lives than brain tumours. Brain tumours pose as great a danger to our children as meningitis, and yet most parents and doctors have at least a rough idea of how to identify the symptoms of meningitis. Of course, it is not just those children who lose the battle with a brain tumour who suffer. Of the children who survive a brain tumour, 60% of them are left with life-altering disabilities, including blindness and brain damage.

[Jim Shannon]

I congratulate the hon. Gentleman on bringing this matter to the House for consideration; it is a very important issue. He will be well aware that it is better for a child to be diagnosed with a brain tumour in the United States of America, for instance, than in the United Kingdom; to be precise, it is three times better. One reason why the United States does better in its diagnosis of children with brain tumours is that education and health work together there. Does he feel that perhaps what the Minister could do here is to have better co-ordination between staff in schools and the health system, to achieve better early diagnosis?

[Mr Raab]

I thank the hon. Gentleman for his intervention, and he is absolutely bang on. I will come on to discuss the three specific measures that are key as part of that co-ordination.

Many of these tragedies could be averted. Whether it is preventing avoidable deaths or limiting the permanent damage inflicted by brain tumours, early diagnosis is the key, as has already been said; I suspect that there will be consensus on that.

[James Duddridge (Rochford and Southend East) (Con)]

As well as early diagnosis, early treatment is vital; in many cases, that involves immediate surgery. Will my hon. Friend press the Minister to make some statement as to how long it takes from diagnosis to treatment, and about how things are progressing on that front?

[Mr Raab]

I thank my hon. Friend for his intervention; I know that he feels very strongly about that point. It is an excellent point and the Minister will have heard it. I have a range of points that we can certainly follow up with the Minister if they are not addressed in her speech, but that is an important point on top of the critical importance of early diagnosis.

There is a wealth of clinical and scientific evidence to back up the argument that early diagnosis is key. Research up until 2006 showed that the median delay in diagnosing a brain tumour in a child in Britain was 12 to 13 weeks. In other words, half the affected youngsters took more than three months to reach diagnosis and then treatment. That was up to three times longer than the diagnosis delay in other countries, including the US and Canada. Let us just think about what that means. It means child after child walking around—in their home, around their school and even through their own GP’s surgery—with identifiable symptoms of brain tumours that could have been picked up but sadly were not.

[Guy Opperman (Hexham) (Con)]

I am lucky enough that I collapsed in this austere palace and was taken straight to St Thomas’s hospital with a brain tumour, and I am living proof that someone can recover from a brain tumour. I should declare my support for the National Brain Appeal, which I raise money for.

Does my hon. Friend agree that there needs to be a designated GP within the cluster of GPs’ surgeries that we all have in our communities who is the first point of reference when an individual child or adult presents to a GP clinic with some designated head symptoms?

[Mr Raab]

I thank my hon. Friend for his intervention. That sounds to me like a perfectly sensible suggestion. Again, it is a practical recommendation about how to deal with the fast-tracking from diagnosis to treatment, and again I am sure that the Minister has taken it on board.

The key thing that I have realised from being informed by HeadSmart and others about this issue is that the warning signs of a brain tumour—particularly in children, who are the focus of this debate—are not especially technical or terribly difficult to detect. We are talking about regular headaches or vomiting; difficulty in co-ordinating, balancing, or walking; blurred vision; and fits or seizures. Those are the most common symptoms, and they are signs that parents, doctors, teachers and children should be able to pick up on.

[Mary Macleod (Brentford and Isleworth) (Con)]

Will my hon. Friend give way?

[Mr Raab]

Again, I will make a small amount of progress and then I will give way to my hon. Friend. As I was saying, those signs are symptoms that we should be able to pick up on, even if it is just to get them checked out properly so as to allay fears.

The scale of these tragedies led the Brain Tumour Charity to launch the HeadSmart campaign in 2011, to try to raise greater awareness and in particular to cut this life-threatening delay in diagnosis; there is also the issue of the delay between diagnosis and treatment. The thing that occurs to me is that we have seen truly amazing public awareness campaigns in this country. Think of the drink driving adverts; think of the campaigns in the 1990s to “Just Say No” to drugs; and more recently there have been the Vinnie Jones CPR adverts and the campaign to identify the early signs of a stroke, which is particularly germane to this debate. We are quite good at this work in this country, if we get hold of an issue and grasp it. HeadSmart wants to do something similar about brain tumours in children, but in a different way.

[Mary Macleod]

I am delighted that my hon. Friend has taken up this issue. I have already been to see the Minister about it, and generally she has been very helpful on brain tumours. Does he not find the statistics that he mentioned about the delay of 12 to 13 weeks unacceptable? If there was some sort of public awareness campaign on those symptoms, more people might be helped to go to their GP earlier and then we might also need extra sharing of best practice among the primary health sector.

[Mr Raab]

My hon. Friend is right. It is particularly regrettable that we have such a delay in comparison with other countries if we could take simple steps, which would not even cost the taxpayer money, to reduce the delay through political will and co-ordination.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I congratulate my hon. Friend on securing the debate. He has mentioned political will and co-ordination; does he agree that county councils and local education authorities can play a critical role in getting the HeadSmart cards out to schools? Will he join me in commending Hampshire county council, which has met Mrs Langton-Gilks and is working to ensure that the message is better disseminated to schools to increase awareness?

[Mr Raab]

My hon. Friend is bang on. I was going to come on to exactly that point, and I could not agree more.

[Mark Pawsey (Rugby) (Con)]

Will my hon. Friend give way?

[Mr Raab]

I will make a bit more progress, because otherwise the Minister will not have a chance to respond at length, which I know she will want to do.

The HeadSmart campaign has developed an online education module to help health professionals to recognise the signs and symptoms of brain tumours in children and young people. There is now a network of clinical champions in each of the neuro-oncology centres around the UK giving presentations to fellow health professionals on the subject. There is also, critically, a network of local champions. David’s mum, Sacha, who is also here for the debate, is the first of those.

HeadSmart awareness packs have been distributed to more than 1,000 doctors’ surgeries around the country, and more than 625,000 symptom cards have been distributed across the UK. Only one year after the launch of the HeadSmart campaign, the diagnosis delay has fallen from an average of 9.3 weeks in 2011 to 7.5 weeks in 2012. This year, it is down further to 6.9 weeks. That is terrific progress, and we should welcome it.

[Andrew Selous (South West Bedfordshire) (Con)]

Will my hon. Friend give way?

[Mr Raab]

I am just going to make a bit more progress, if I may, but I will come back to the hon. Gentleman. The progress has been good, but it has also highlighted how easy it is, with practical steps, to save lives and prevent the serious and permanent damage that tumours can inflict on their survivors. HeadSmart’s explicit aim is to get the average diagnosis delay down to five weeks, which represents best practice in the west. That would save countless lives and reduce the number of permanent disabilities.

There are various aspects to the ongoing campaign, and hon. Members have intervened already with particular dimensions that they want to explore. I want to focus on three basic steps, which are well within our gift as politicians, to help us reach that critical five-week target. The crux of the debate, compared with so many others that we grapple with, is that that target is reachable and these three measures are in the “eminently doable” category. We really ought to stretch our sinews as politicians to ensure that the target is reached.

First, and most importantly, the HeadSmart campaign has made it a priority to get its credit card-sized awareness cards into every school and nursery in the country, as my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) has mentioned. I have got one here. It can fit into the smallest wallet or purse; it explains the early symptoms of a brain tumour; it differentiates between symptoms depending on the age of the child; it tells you what to do if you are worried; and it gives contact details and a website to find out more information. If the cards are handed out to children at school to take home to their parents, that will go a long way towards heightening awareness and ensuring that children and parents have an easy reference tool to hand.

HeadSmart is already making progress. As we have heard, distribution has been carried out in Wiltshire, East Sussex, Sutton and Reading. Those areas are the trailblazers, and other councils are expected to follow their lead soon. I will be visiting Surrey county council with Sacha tomorrow. To date, the campaign has benefited from local co-ordinators who make contact with councils to encourage them to disseminate the cards through their internal mail system. Critically, because the Brain Tumour Charity pays for the cards and bundles them for distribution, the measure costs the councils nothing.

What we need now from Government is co-ordination and, frankly, political will, rather than pounds and pence. I have a very simple request, which is the most important purpose of the debate. Will the Minister write to every head of public health in all our councils, given their new responsibilities in the area, and urge them to back the campaign by sending out these cards for distribution via every school and nursery? That is the single measure that can contribute the most towards nailing the five-week target.

[Andrew Selous]

Brain tumours are the main cause of cancer deaths in children. Does my hon. Friend share my concern that they get only 0.8% of research funding, given that they are so significant?

[Mr Raab]

Although I am focusing on three practical aspects of the campaign, I thank my hon. Friend for that wider point about research funding. It was well made and I am sure that it has been registered.

The second key measure under the HeadSmart campaign is for the Government to encourage secondary school head teachers to invite the Teenage Cancer Trust to do a one-hour talk on the subject, because that has a proven track record of spreading awareness. Will the Minister take the lead and team up with her colleagues at the Department for Education to deliver on that important step?

[Mary Macleod]

I have a quick suggestion based on my hon. Friend’s last two points. Might MPs perhaps help in the co-ordination effort? HeadSmart could send their leaflets to MPs to distribute to schools in their own areas. I, for one, would be perfectly happy to do so.

[Mr Raab]

I thank my hon. Friend for her intervention. I am open to that idea, but the point is that councils have an internal mail system for delivering items to schools and nurseries. They are used to distributing in bulk, which is what we are talking about, to all schools. If we distributed the cards via MPs, I am not sure that it would happen in every case, although it certainly would for many. We need a comprehensive, co-ordinated approach, and, of course, our local councils have responsibility in this area.

[Mr Robin Walker (Worcester) (Con)]

rose—

[Mark Pawsey]

rose—

[Mr Raab]

I am going to make progress, because otherwise there will not be time for the Minister to respond.

The third and final measure that I recommend to the Minister is that she write to the cabinet members for children’s services in all our local councils to direct health visitors to include the awareness cards in every child’s and baby’s red book, or at least to display them in every baby clinic alongside the meningitis cards that are already there. That is an effective way to raise awareness among parents of babies and young children.

The campaign is powerful and compelling, and I pay tribute to HeadSmart and all those who have been involved in it. It is compelling not least because we can do something about the problem. The tragedies of children dying or being left permanently and severely scarred by disability as a result of late-diagnosed brain tumours move us all. How could they fail to? The scale of the suffering is far greater than is generally realised or acknowledged, but we have a real opportunity to do something about it through a concerted team effort, by joining up central Government and local authorities with the pioneering efforts of the voluntary sector through HeadSmart.

Today, I have flagged up three simple steps that can bring us within touching distance of the five-week diagnosis target, which would represent a major breakthrough in this country.

[Mark Pawsey]

I want to speak about the impact of awareness among medical professionals. A constituent of mine whose son suffers from a brain tumour and a friend of mine who lost his daughter to a brain tumour have both drawn my attention to the fact that the symptoms of brain tumours often mimic those of less serious conditions. We must be aware of the fact that brain tumours are often undiagnosed by the medical profession, as well as of the need to create awareness among the broader community.

[Mr Raab]

My hon. Friend has made a good point, and I am not suggesting that the awareness cards will suddenly save every single child with symptoms. They will, however, increase our opportunity to pick up obvious and evident symptoms and ensure that they are checked out further.

I am asking for three basic measures, which I hope the Minister will respond to. I am not asking for a miracle cure, which is something that science regrettably cannot yet provide. I am not asking for a huge financial investment in a time of austerity; the measures I have outlined will not cost the taxpayer a penny. I am calling for the political will to implement three modest but ambitious measures that will have a massive impact on families across Britain. The Minister is known for her gumption, and I urge her to put her shoulder full square behind the cause.

--- Later in debate ---

[Anna Soubry]

I do not agree. I do not know about my hon. Friend, but I write to all my schools. In truth, I do not have that many schools, so there are not that many letters. A letter from a Member of Parliament to all their schools and to their health and wellbeing board could be very powerful. I am more than happy to talk to my colleagues in the Department for Education, but I am not sure that a letter to cabinet members will have any weight.

[Mr Raab]

Will the Minister give way?

[Anna Soubry]

I am going to run out of time. Unless my hon. Friend is very quick, I do not see how I can respond.

--- Later in debate ---

[Mr Raab]

I thank the Minister for giving way. The whole point of this debate is to try to get central Government to co-ordinate with local government. We are not talking about forcing local government, but we are talking about urging local government to do something through its internal mail system. Will she give that further consideration and perhaps meet me and the HeadSmart campaign?

[Anna Soubry]

Yes. That is a brilliant idea, and I am more than happy to do it, especially as I have only six seconds left. Seriously, though, between us all we can find a way to ensure that we all get what we want.

Question put and agreed to.