Child Cancer

Mark Tami Excerpts

Monday 28th November 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 162934 relating to child cancer.

It is a pleasure to serve under your chairmanship today, Mr Davies. I thank all right hon. and hon. Members present for attending.

The debate arises from an online petition on child cancer started by a couple whose child, Poppy-Mai, sadly passed away after a battle with a very rare cancer. She contracted a progressive and aggressive malignant rhabdoid tumour, which progressed into a metastatic brain tumour. The petition is entitled:

“Force child cancer to the forefront of the NHS and government funding schemes”,

and it calls for “more funding” to be made

“available in the fight against child cancer.”

It also calls for more to be done

“to spread awareness…more genetic testing and research. Child cancer needs to be at the forefront of our minds.”

At this point, it is important that I clarify to the petitioners that, as a member of the Petitions Committee, my job today is to lead the debate and not to take a position on behalf of the Committee. I promise to take as many interventions from as many Members as possible, to involve them in the debate.

One of the charities that got in touch with me before this debate was Christopher’s Smile, whose motto—“coz kids get cancer too”—shows the sad reality of childhood cancer. There is something even sadder when cancer—in fact, any disease—attacks children: they have the rest of their life ahead of them and cannot be said to have caused or encouraged cancer themselves by their lifestyle choices. However, there is a smaller national profile for childhood cancer, with less attention focused on the important signs to look out for and the ways to avoid it, than for cancers that usually affect adults, even though childhood cancer is the biggest killer by disease of children in the western world.

Child cancer recently hit the headlines when the singer Michael Bublé announced that he was taking a break from performing while his three-year-old son undergoes treatment for liver cancer. I am sure that all Members here today will join me in sending our best wishes to Michael, Noah and their family at this very upsetting time. What they are going through at the moment is unthinkable and there are many families across the UK in exactly the same position, with parents feeling helpless while wanting to do everything possible to protect their children from this dreadful and cruel disease.

Unfortunately, that sad story shows that cancer can strike anyone at any time. More needs to be done to educate all of us on what signs to look out for, so that cancer can be caught early and there is a higher chance of survival. I thank the Government for their response to the petition. I am sure that Members from all parties in the House support the Government’s ambition to lead the world in fighting cancer. More attention needs to be given to the ways that we can become the world leader, so that we can see the number of cancer diagnoses fall and the number of cancer survivors increase.

The cancer taskforce’s five-year plan to achieve world-class cancer outcomes includes many recommendations on cancer in children, including

“a possible review of CTYA services”—

that is, services for children, teenagers and young adults—

“to provide improved integrated care”,

and to seek

“consent from children and young people for their data and tissue collection for use in future research studies and development of services and…ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased.”

All these things are crucial to beating childhood cancer and improving the care received by those who contract the disease.

On multiple occasions, charities have raised with me and the Petitions Committee the importance of getting real data to help with future developments in a range of different diseases. I chair the all-party group on rare, genetic and undiagnosed conditions, so I know that this problem does not only affect childhood cancers; it also affects other areas of the health debate. It is potentially even more important when it comes to child cancer, because thankfully child cancer is rare, relative to the population. I urge the Government to look carefully at ways in which researchers can gain access to those important, albeit anonymised data as a priority.

I was pleased to read in the Government’s response to the petition their understanding that

“a cancer diagnosis can have devastating consequences for the lives of young people and their families”,

and that the Department of Health recognises that the most important thing is that

“Care should be built around what matters to the young person and their family”.

The Department is

“working closely with cancer charities to ensure patients get the support they need during and after their treatment.”

However, more can still be done to ensure that when a cancer diagnosis is received—especially if, sadly, it is a terminal diagnosis—the child is made as comfortable as possible and is able to spend time with people who love them.

[Mark Tami (Alyn and Deeside) (Lab)]

As a parent who went through this when my son was nine, I know that the news is devastating for parents. What happens to the family around the child and the level of support that is provided are also important. I was an MP at the time, with a good salary, but a lot of people do not have that level of income, or perhaps they do not have other family members to come round. We really need to put in extra support, and not months afterwards but straight away, when parents actually get that news.

[Ben Howlett]

I agree with the hon. Gentleman. There is a multitude of different organisations out there to help at the point when a diagnosis is received, but of course that should not distract from the fact that the Government also need to look at early intervention to support the family of a child when the child receives a diagnosis. I hope that the Minister will mention that when responding to the debate.

I am the MP for Bath, which is in the south-west, and I pay personal tribute to the great work done by the Children’s Hospice South West, which serves my constituency and others across the entire region. The hospice’s dedication and the service it provides in the final days of a child’s life is tremendous. I thank the hospice on behalf of my constituents for all the work that it does.

Research and funding are obviously critical. Evidence has been submitted throughout the course of the discussions around this issue. I am sure that all colleagues in this House will welcome the fact that the number of children dying from cancer each year in the UK has fallen in the last 20 years, but one child dying is obviously far too many. Research has been at the heart of the progress made, helping more children to survive cancer than ever before, but as I said, childhood cancer remains the biggest killer by disease of children in the western world.

[Ben Howlett]

I thank my hon. Friend for her intervention, and I pay tribute to her and to other colleagues for championing cases such as that one in their work as constituency MPs. She makes an incredibly important point. Months ago, I took part in another Petitions Committee debate in relation to brain tumours and it is quite clear to me that the rarer a cancer is, the less attention is paid to the funding of research to find the underlying causes. There has been a change during the last few months and years, with more attention focused on some of the rarer cancers, but there is still a long way to go. I hope that some of the major progress made on the more common cancers, such as prostate cancer and breast cancer, and the evidence gathered can be applied to some of the rarer cancers as medical technology improves.

Approximately 3,800 children and young people in the UK are diagnosed with cancer each year, and approximately 260 children in the UK die each year from cancer before their 15th birthday. For those who survive, there are often lifelong treatment-related health problems to be dealt with. In addition, as the hon. Member for Alyn and Deeside (Mark Tami) made clear, there are also the ongoing costs in relation to the treatment and support for the families as well throughout the entire process. To be frank, we must do an awful lot more.

[Mark Tami]

Does the hon. Gentleman agree that it is not only the physical side of the illness that we must address, but what happens to children if they get through their illness—hopefully they do—including all the questions they will have, such as “Why has this happened to me?” and “Why do I look different?”, their reintegration into school and their anger? We might put a lot of money into addressing the illness itself, but we put very little into looking after the child afterwards. It is no accident that children who have had cancer have a higher suicide rate than those who have not.

[Ben Howlett]

I pay tribute to the work the hon. Gentleman has been doing in this area and I completely agree with him. The health benefit analysis that is at the heart of the Department of Health in a number of areas is under review—it is constantly under review—but it needs a much more holistic understanding of the costs, not just in economic terms but in terms of societal issues, including mental health and ongoing support for a child’s family for, hopefully, the rest of their life.

I welcome the Government’s focus on improving earlier diagnosis, as it makes it more likely that patients, including children with cancer, will receive effective treatment. Additionally, it is good news that the Government have committed to implementing all the recommendations of the cancer taskforce, including that by 2020 everyone referred with suspected cancer will receive either a definitive diagnosis or the all-clear within four weeks.

--- Later in debate ---

[Sir Roger Gale (North Thanet) (Con)]

I had not intended to take part in this debate, but having heard what I have heard, I am moved to make a brief contribution. One of the most harrowing of the many harrowing things that a Member of Parliament has to deal with, particularly any MP who is a parent, is to be confronted by desperate parents with a desperately sick infant or young adult who are begging for help and are coming to their Member of Parliament as the last resort. In the course of a parliamentary career, I suspect that most colleagues will face that circumstance. If they have not already, they will in time.

Most of us will have been faced with the need or desire to fundraise to send that child to another country, often but not exclusively to the United States, for treatment that is not available here and that may or may not be efficacious. In my case, I experienced that at second hand rather than at first hand, unlike some colleagues present, but those of us who have experienced it know only too well that people will clutch at any straw. I would do the same, and I am sure you would too, Mr Davies. If the chance of success is 10%, they will take it, because 10% is better than 0%.

What grieves me is that so much effort goes into trying to react and therefore relatively little effort goes into trying to pre-empt. There are wonderful children’s hospices around the country, and I pay tribute to them. Demelza House in Kent is fantastic—there are many others—but the object of the exercise is to try to ensure that treatment is available so that children do not need to go into hospices at all.

One case that hit the headlines not so long ago was a child who was effectively abducted from hospital care and taken first to Spain and then elsewhere for treatment, because something was not available here and was available somewhere else. That straw was clutched at, and I would have done the same. Looking at what happens overseas and thinking of those hard cases, a couple of things come out from what has been said already today. Thankfully, the scale is relatively small. Equally thankfully, the scale of individual cancers is smaller still, but that in itself creates a problem. The point has been made that drug companies are reluctant to invest in the research and generation of drugs that might not be viable because there is no real market for them.

My hon. Friend the Minister has a background in science, and she will understand the possibilities that flow from co-operation probably better than anyone in the room. Having looked at the matter over a number of years and having seen the work that the Teenage Cancer Trust has done, it seems to me that we need to pull together all the expertise and concentrate on one or two centres of excellence, so that the scale and the ability for young medics to learn are viable. It is very difficult for someone to become expert in something if they do not have a patient to study. I urge the Minister to give an indication that the Government will make a Herculean effort, in a way that there has not been before, to pull together all the strands. We also need to maximise the possibilities of international co-operation, because work is being done in other countries.

[Mark Tami]

Sorry for talking about my experience again, but my son was very fortunate to find a donor. He had a stem cell transplant in the end. As a parent, that was great for us, but we were with other parents who were not so fortunate and who saw their children pass away because they could not find a donor. The awful thing is that there are people out there who would be a match, but they do not know it. I want to put on the record my support for Anthony Nolan and other charities that have saved so many lives. We really do need to do more. Stem cell transplants offer a great opportunity for not only treating cancer, but other things as well in the longer term. I simply want to put on the record how important it is that that very important work carries on and that we do not have the situation in which some are fortunate and some are not.

[Sir Roger Gale]

The hon. Gentleman is absolutely right. He was also right to pay tribute, as I and others should have done, to the Anthony Nolan trust.

I do not often argue for centralisation, but, in this case, given the scale and the limited resources that are available, it seems that a concentration of effort might deliver more results than a dissipation of that effort.

Finally, I want to endorse what the hon. Member for Alyn and Deeside (Mark Tami) said earlier. There is a crying need for support for families from day one from the moment the diagnosis is made and the family is informed. There is a huge need for support. Some are fortunate in having large and supportive families. Others much less fortunate face terrifying circumstances and isolation.

--- Later in debate ---

[Thangam Debbonaire (Bristol West) (Lab)]

I thank the hon. Member for Bath (Ben Howlett) for his introduction and other hon. Members for their personal and heartfelt speeches and interventions. In particular, I thank the parents of Poppy-Mai, who started the petition and so brought this matter to the attention of the House.

My five asks are clear. First, more units such as the specialist one in Bristol for teenagers and young adults with cancer are needed. The units need to be carefully commissioned so that the maximum amount of specialist clinical knowledge is available to the maximum number of young people.

Secondly, a clear commissioning structure for services for children, teenagers and young adults with cancer is needed, so that everyone knows where the buck stops and who is responsible. Thirdly, the benefit system needs to be adjusted, as other hon. Members have said, so that the families of children and young people are not put into awful financial difficulties such as we have heard about just at the time when they most need to concentrate on their child and nothing else.

Fourthly, Government leadership is needed—I urge the Minister to respond to matters raised by me and other Members—with commissioning guidance, clear priorities and funding for specialist services. Fifthly, the Government need to take responsibility and say how we will go about researching childhood cancers in collaboration with European Union partners after we leave it.

Earlier this year, I visited the specialist teenage and young adults unit in Bristol, accompanied by Christine from the Teenage Cancer Trust, which contributed to the cost of the unit. The unit creates and maintains an environment that provides care for the whole person, helping that young person to cope with the emotional side of their illness, as well as giving them time and space to do school work, to be with friends and family, and to just be a young person not defined by their cancer.

The decor definitely does not make the unit feel like a cancer ward. Yes, per patient, that is more expensive than adult cancer wards. Thankfully, cancer is rare in childhood and youth, but young people have very different specific needs to be met.

[Mark Tami]

As my hon. Friend is making clear, we have to have specialist centres, but we must not think that we can have them on our doorstep everywhere. That will just not happen, and it would not make sense for it to happen. If we have specialist centres, however, people will have to travel, and families need support and somewhere to stay. I put on record my support for the Ronald McDonald House Charities, which do incredible work providing parents with somewhere to stay. The actual cost burden on parents alone for what can be long treatment periods is astronomical, and a lot of people simply do not have the money.

[Thangam Debbonaire]

I, too, will be mentioning similar services later in my speech. Absolutely, the last thing parents facing such awful situations need to be worrying about is where they will stay, how they will afford it and how they will afford even to put petrol in the tank.

My nephew was diagnosed at age 12 with osteosarcoma, a very rare childhood cancer. We were all so focused on getting him and his mum, and his sisters and brothers, though that illness that the longer-term impacts felt very much secondary. Specialist units such as the one in Bristol help the family as well as the young person with cancer to see the whole of life as important, to think about the longer-term implications and to prepare for them. I pay very personal tribute to the teenage and young adults cancer unit in Bristol for its work and to the Teenage Cancer Trust for its support of the unit.

As my hon. Friend said, getting the number of units right is difficult. Given the thankfully low numbers of childhood cancer victims, if the units are to be truly specialist, it will not be an easy matrix. To ensure an appropriate number of specialist units, the Government need to be clear with appropriate commissioning guidance and take responsibility for following it through.

In October when I asked the Department of Health in question 50795 what proportion of specialist units were funded by charitable trusts, the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), replied:

“This information is not held centrally.”

For me, that is simply not good enough. Yes, commissioning is done locally, and increasingly commissioning groups and trusts are collaborating, but Government leadership is necessary to work out how many units are needed and how to fund them. Will the Minister commit to gathering that information centrally in order to estimate properly the funding needed to commission appropriately throughout the country? Will she further commit to consulting on and publishing clear commissioning guidance so that the responsibility for commissioning and funding specialist treatment centres for children, young people and young adults is clearly identified, and so that a structure for commissioning across health regions is clear?

On the future of research into childhood cancers, there is clear potential for harm when the UK leaves the EU—I say “potential”, because any such harm can be mitigated, but the Government need to act urgently to address it. Earlier this month in answer to my question 50081 about research, the Minister for Universities, Science, Research and Innovation gave welcome assurances about funding. I welcome those assurances, but he did not mention research cohorts. Thankfully, childhood cancer is rare, so it is vital for UK researchers to be able to collaborate fully with their EU counterparts so that they can carry out clinically adequate research with a sufficiently large enough group of children and young people to provide clinically useful and secure results. Yes, funding is vital and I am grateful to him for those assurances, but it is not enough. My next question to the Minister present is this: will she commit to discussing that with her colleagues in the Department for Exiting the European Union, along with research about other rare childhood cancers?

As my hon. Friend the Member for Alyn and Deeside (Mark Tami) mentioned, children and young people with cancer and their parents often need to travel long distances for specialist treatment. That might always be unavoidable and, in any case, there are other huge financial costs for parents. In September, I was proud to chair the parliamentary launch of a report by CLIC Sargent, which does so much wonderful work to support children and families affected by childhood cancer. The report shows that the costs of cancer are not only emotional, educational and physical, but financial.

One young person at the launch spoke about how he had to prove repeatedly to the benefits agency that he had cancer and that his treatment was still not over nor his recovery complete. Another young person found that her student loan was stopped because she was deemed to be a student no longer, but her halls of residence still charged her rent. A lone parent spoke of her struggles to manage her finances while faced with losing her income from employment and the increased costs of driving her son a long distance many times each month for treatment, as well as the added costs of heating a home all day for a very sick child, which is often overlooked, and the costs of keeping clothes, bedding and house scrupulously clean, which is so important because the risk of infection is extremely high for those undergoing gruesome treatments such as chemotherapy, as other hon. Members have mentioned.

CLIC Sargent and other charities I know help with all those things and more. I have had the privilege of being shown round the CLIC Sargent house in Bristol, located a few minutes’ walk from the Bristol Royal infirmary. That house, run by a wonderful woman who knows all too well what childhood cancer means, provides a haven just when it is needed.