How Should England's Children's Cancer Care be Reorganised?

Prof Karol Sikora


February 05, 2020

This transcript has been edited for clarity.

Hello, this is Professor Karol Sikora. I'm an oncologist and I'm going to talk about the organisation of cancer services in England for children.

This is a report that just came out last week from Sir Mike Richards, who I know well, and he was asked to provide NHS England with some guidance about the future of children's cancer services.

So, the first thing to say is I'm not a paediatric oncologist. But obviously, having been an NHS consultant for over 40 years, I've seen things come and go in the paediatric community.

Paediatric Cancer Statistics

The good news is that 80% of children with cancer will be cured of their disease. That compares to about 49% of adults that have cancer. So a very good prognostic outcome for the majority of patients.

The less good news is that some of the patients treated for paediatric cancer will become seriously ill because of the treatment and because of the complications of treatment, and they’ll require admission to a paediatric intensive care unit.

There aren't many of those in the country, and some of them are not juxtaposed to a cancer treatment centre. So that to me is the biggest problem we've got in paediatrics.

NHS Acronyms

So let's look at the current status of the subject. Before we begin there are some abbreviations to understand.

  • PTC is a principal treatment centre

  • PICU is a paediatric intensive care unit

  • And a POSCU is a paediatric oncology shared unit

At the moment, there are 14 PTCs - paediatric treatment centres.

Two of them are coupled - Leicester and Nottingham - so there's really only 13.

They vary enormously in the number of patients they see.

The smallest is Bristol at 45 patients a year. The largest is University College London, with Great Ormond Street at 296 patients last year.

The other thing to understand is that NHS England doesn't carry out work in Scotland, Northern Ireland or Wales. And so when Mike reviews this lot, he's reviewing just the English data.

So the numbers are slightly different when you look at total UK cancer incidence for children.

And I think if you look at where we do cancer treatment, there's enormous variation in what's on offer and also the types of cases coming through specific centres.

If you look at what cancers are common in children:

  • Leukaemia is 31%

  • Brain CNS is 25%

  • Lymphoma 10%

And then a whole range of small numbers of tumours, all under 100 a year, that make up the total number of 1600 a year:

  • Hepatic tumours 18

  • Retinoblastoma 39

  • Germ cell tumours 47

  • Soft tissue tumours 91

And then the leukaemia, brain, and lymphoma that make the bulk of paediatric cancer.

Child Cancer Survival

So the thing about paediatric cancer, it's rare, it's different from adult cancer. The treatment is complex and long-term. The high rate of clinical trials - international trials, local trials - very much higher compared to conventional adult oncology. 

Survival rates in the UK are actually below some European studies, especially in Germany and Canada, and why we have this poorer survival rate in children is not clear.

We know in adults, it's mainly due to diagnostic problems resulting in late advanced stage presentations. But that's not the case in children.

So what is it that makes our survival statistics poorer?

We know we can improve the outcomes and the other thing that the report points out is that only 40% of childhood tumours are banked in any collective tissue bank. And that's important, because obviously, genetics, genomics, and other molecular markers are the key to understanding the personalisation of regimens for an individual child. So having a data set is really important. 

It's an impossible task to try and sort this out. 

Every time you try and change complex infrastructures it costs money, it costs personal difficulties, it means people can't park in the car park anymore where they used to, all sorts of things happen. 

Mergers, Reorganisation?

I really have to commend Mike, he's done this very well. He does all this sort of thing very well, to try and come out with a plan. 

And as always, the plan is really in two bits.

One looks at the minimal size for co-locating a PICU intensive care unit with the treatment centre.

And you know that the 13 units around the country, it's pretty obvious that they match - so Leeds, Newcastle, Oxford, all these places have an intensive care unit fairly close, if not in the same hospital but close by.

The real problems come in London, which of course are the two biggest units. We have University College, we have Great Ormond Street, and we have the Royal Marsden, all treating children.

Great Ormond Street has an intensive care unit. Royal Marsden does not, but the patients go to the paediatric services at St George's Hospital, which is a large general hospital, teaching general hospital, in Tooting. So not far away, but in heavy traffic it can be slower to get to.

What the report is very good at pointing out is not really access times, usually you can predict when a child is going off and arrange the appropriate transport to the appropriate unit, but it's the whole communication between the different teams. 

If a child has been with the parents, closely involved with a consultant paediatrician who's doing the cancer work, then suddenly they're snatched away and go to another hospital to the ITU, and they are taken out of that care from that paediatric consultant and put into equally good and equally conscientious people. But there's no link between the two. And that's part of the trouble where you have the PICU separated from the PTC, and that is pointed out here. 


The difficulty is how you solve the problem in London.

Which do you close? And do you go for a single paediatric centre for London, which is probably the obvious solution. There aren't that many patients, and it could be part of a reorganisation of cancer services in London.

The problem is we, rather like the railways, most of the big hospitals started in Victorian times just like the railway tracks, and we're trying to adapt them over a century later to the 21st century. And we're struggling to do that.

The other problem in paediatric oncology is the number of patients requiring intensive care may actually be going up.

At the moment in most cancer treatments there's less than a 5% chance of someone needing to go to a ICU.

Radiotherapy, conventional chemotherapy, on the whole doesn't need access to PICU except in rare occasions. But some of the new treatments, CAR-T cell therapy for example, chimeric antigen receptor therapy, that does need access because up to 50% of people will go into shock for a variety of reasons and require intensive care.

So these are all changes for the future.

I think what Mike did was consult quite widely with patient groups, with charities, with professional groups. And, you know, at the end of the day, someone has to make a decision about how to re-site the organisation.

To me, the obvious thing to do is to do it all at Great Ormond Street, University College, and somewhere in South London. There's also the Evelina Children's Hospital at Kings College.

It's really not something you design, maybe a two-site Royal Marsden/Great Ormond Street/University College would be the way forward.

But it is an interesting report. And I think it can be taken in context with the organisation of cancer services generally. There's no doubt better organisation - better results, better access to care, and better outcomes for care, because you're putting specialists together, not just doctors, but everybody, for the whole team needs to specialise in that particular class of patient and in this case, the report is about children and they're very important. 

A tremendous concept here. Tremendous work has gone on in paediatric oncology. It's been transformed over the last 50 years. And so I think this report is very helpful, at least in pointing out the problems in London that need to be solved. But then London has always been very difficult.

On the whole, paediatricians are not as aggressive, and as perhaps pushy as some of the adult oncologists I know. In fact, they're quite charming, and I'm sure they'll come to a consensus and move forward as one body to do the best for their patients.

This is Professor Karol Sikora, talking about the reorganisation of children's cancer services in England. Thank you.

NHS Engand. Children’s Cancer Services: A review on behalf of NHS England 2019/20. Professor Sir Mike Richards, 20th January 2020. Report.


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