The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)
I start by congratulating my hon. Friend the Member for Gosport (Dame Caroline Dinenage) on securing this debate. We talk often about cancer in this place, whether at oral questions, in Westminster Hall or in Backbench Business debates, but rarely do we talk about childhood cancers. As we have heard today, it is crucial that we talk about them, and that we listen and learn from the experience of Sophie and the campaigns she started, which her family are continuing.
There have been many contributions, and I will list as many as I can. We heard from the right hon. Member for Alyn and Deeside (Mark Tami), who shared his son’s experience. My hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) shared the experience of her constituent Laura, whose daughter Ebony was affected. The hon. Member for Airdrie and Shotts (Ms Qaisar) told Rayhan’s story. The hon. Member for Delyn (Rob Roberts) shared Jordan’s story. My hon. Friend the Member for North Cornwall (Scott Mann) contacted me ahead of the debate to talk about his constituent Talan. The hon. Member for North Antrim (Ian Paisley) mentioned Jake. The hon. Member for Coventry North West (Taiwo Owatemi) told us the story of Ben, who sadly died. My hon. Friend the Member for South Cambridgeshire (Anthony Browne) talked about Georgia. The hon. Member for East Renfrewshire (Kirsten Oswald) mentioned River and their experience.
My right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) told us George’s story. We heard about Ruby from the hon. Member for Dulwich and West Norwood (Helen Hayes) and about Alice, who is doing well, thankfully, from my hon. Friend the Member for Sevenoaks (Laura Trott). We heard about Elsa from the hon. Member for Leeds East (Richard Burgon) and Liam from my hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat). My right hon. Friend the Member for Pudsey (Stuart Andrew) contacted me ahead of the debate to tell me about his constituent Catherine Beaumont and her nephew Oliver, who sadly died last year.
We heard from my hon. Friend the Member for Berwickshire, Roxburgh and Selkirk (John Lamont) about Julie. My hon. Friend the Member for Meon Valley (Mrs Drummond) told us about her own personal experience but also that of her constituent Alison’s son Jake. Finally, my hon. Friend the Member for North Norfolk (Duncan Baker) talked about Benny and my hon. Friend the Member for Hartlepool (Jill Mortimer) talked about Isabellah.
Dean Russell (Watford) (Con)
I think the common thread in all those stories was families who lost a loved one and still wanted to make a difference for families in future, the same as my constituent Laura MacQueen, who sadly had to endure the loss of her daughter Jess at the age of nine to a rare form of cancer. It was heartbreaking hearing her story, but what she is doing now is continuing to call for more investment and research into childhood cancers. I hope the Minister will hear that loud and clear.
Maria Caulfield
I think the names that we have read out this afternoon show that, while cancer in children only accounts for 1% of cancer cases, if you are in that 1%, it does not feel very rare at all. I thank all hon. and right hon. Members for sharing the stories of their constituents.
That means, as has been pointed out, that GPs will only see one or two cases of childhood cancer over the course of their career. These can be difficult cancers to spot because some of the symptoms reflect other illnesses and other conditions. NICE guidelines are trying to support GPs. The NG12 guidelines underpin cancer referrals. They set out detailed guidelines for GPs on the symptoms of cancer in children and recommend very urgent referrals that mean an appointment within 48 hours for children presenting with a wide range of potential cancer symptoms, from unexplained lumps to bruising or bleeding. The guidance also recognises the knowledge and insight that parents have, as it sets out that GPs should consider referrals for children where their parents are thinking that their child is not well or there is just something not quite right with them. That referral should happen when parents are concerned, even if the symptoms are most likely to have a benign cause.
Maria Caulfield
I will not, if my hon. Friend does not mind, because we do not have a huge amount of time.
NICE regularly reviews and updates these guidelines on suspected cancers. It urges GPs to think of cancers sooner and lower the referral threshold for tests, and ultimately catch cancer sooner, which does not always save lives but can make a difference if a cancer is diagnosed earlier.
To help GPs to identify signs and symptoms of these childhood cancers, online education programmes such as Gateway C are available, but also face-to-face education sessions have now resumed, including seminars offered by providers such as Cancer Research UK, and primary networks are establishing cancer clinical lead groups to share latest research and good practice.
The rarity of cancers in children, as the hon. Member for North Antrim pointed out, means that it is harder to diagnose outside a specialist setting, and many of the symptoms can mimic other illnesses. For example, diagnosing brain cancer in children is particularly challenging because it often presents in a similar way to epilepsy, and sarcoma symptoms can often start with limb pain, which is often a common complaint in children. It is therefore crucial that children up and down the country have access to specialist services in cancer care, which are not necessarily provided in most hospitals, where traditionally cancer services are arranged by cancer type. Children’s cancer services need to be contained in a small number of specialist units, which we refer to as principal treatment centres, or PTCs. Each child with a suspected cancer should be referred directly to a PTC, which will make the diagnosis and direct provision of treatment. In England, we have 14 of these centres. They manage care through the multi-disciplinary teams and drive diagnosis, treatment and, crucially, as we have heard from many Members, research participation.
As well as diagnosing the condition, the centres are expert in offering psychosocial support, helping children to continue their education and helping, as Sophie campaigned for, to provide specialist play facilities seven days a week. Sophie’s complaint was that those were only provided for five days a week. It is important that we hear from children and young people who receive a cancer diagnosis. I personally thank charities such as Young Lives vs Cancer and the Teenage Cancer Trust, which last year put together guidance for young people in England, Scotland, Wales and Northern Ireland discussing having a visitor and a hand to hold when having cancer treatment. That is useful guidance, and it has been distributed by the NHS to all our cancer alliances in England.
I will touch on the issues that Sophie in particular was campaigning on. Food was a big bugbear of hers. I think she described it as “disgusting” in some of the reports I read. We know that food is important for all patients, but particularly for children, because nutritious food is a way of aiding patients’ recovery. It is difficult in hospital. I know from my experience as a nurse that we always serve food at 7, 12 and 6, and if someone is hungry in between, it is often very difficult to get any food at all. We are working extremely hard to improve hospital food following the publication of the independent review in October 2020. The review made a suite of recommendations across several areas, including nutrition and hydration. The three-year plan, “Great Food, Good Health”, led by NHS England, is under way to implement the recommendations from that review. I hope that Sophie and her family will be pleased we are making some progress with that, because I fully recognise the complaints she made from her experience.
I will touch on research, because it came up so often in hon. and right hon. Members’ contributions. It is important that we improve not only treatment, but its side effects. We have heard from many Members that childhood cancers can have a very successful outcome in terms of survival, but often the impact of those treatments can have a lifelong effect for those with cancer and their families.
I reassure Members that research is taking place. Since 2019, the NHS has been offering whole genome sequencing to all children with cancer to enable more comprehensive and precise diagnosis and access to more personalised treatments that will reduce the number of young people experiencing long-term symptoms from their treatment. There has been a lot of progress on the treatment of childhood cancers, with the majority of children now surviving, but for certain childhood conditions, such as rhabdomyosarcoma, that is not yet the case. Research is crucial to how we deal with it in the long term.
The NIHR, which funds research across the board in the NHS, is funding childhood cancer research across its whole remit, from early translational research right through to clinical research and social care research. I am concerned by the case raised by my hon. Friend the Member for Scunthorpe of researchers in her constituency finding it difficult to access those funds and go through the application process. I am happy to meet her and the researchers to see whether we can unlock some of those jams.
There is support for research into rhabdomyosarcoma at the Royal Marsden biomedical research centre—I declare an interest, as I still work as a nurse at the Royal Marsden—the Royal Marsden clinical research facility and the Great Ormond Street biomedical research centre. We are making some great inroads in funding research into not only cancer treatments, but the effects of treatments.
There is so much more I would like to say to answer Members’ questions, but due to time I simply reassure my hon. Friend the Member for Gosport that the 10-year cancer strategy that the Secretary of State has just announced will tackle many of the issues she has raised. The call for evidence recently closed, but it is a great opportunity to put forward the case for childhood cancers, and I am happy to meet her after the debate to see whether we can push her case forward.