A Difficult Line - interview with Peppy Brock

Penelope ‘Peppy’ Brock gained her medical degree in 1981 and specialisation in paediatrics in 1986 in Belgium. She was a Leukaemia Research Fellow at Great Ormond Street Hospital for two years from 1986 before moving back to Belgium.

Peppy returned to GOSH in 1999 as a Consultant Paediatric Oncologist.

In this exclusive interview Peppy talks about cancer services, research and decision-making at Great Ormond Street Hospital.

Cancer services at GOSH

How do the procedures featured in the programme differ from your day-to-day work?

They don’t really. The documentary makers have captured us really well. What they have chosen to show is very much what we do.

What are the biggest challenges doctors treating childhood cancers face in their work?

The biggest challenge at the moment is treating cancers with poor outcome and trying to improve the cure rates in those particular areas.

Over the last thirty years we have made enormous headway with standard treatments – chemotherapy, radiotherapy, surgery – in a lot of childhood cancers. The average cure rate is now, if you take the cancers collectively, about 70 per cent. The problem is we are now left with certain very high risk tumours.

With certain high-risk cancers like some forms of neuroblastoma (a cancer that forms in nerve tissue), brain tumours and sarcomas (a rare cancer that develops in supportive tissue) we have tried a lot of different combinations of standard treatment but we are not improving the outcome. For these we need new treatments.

Bringing in new treatments requires a lot of research, funding and infrastructure to get the clinical trials up and running. It’s a challenge to choose the right drugs and you’ve got a very small number of children with which to try and improve the outcome. This means it’s a big challenge for the statisticians to see whether we can actually prove that a particular new treatment is better.

How have cancer services for children developed over the past decade?

Cancer services have become more streamlined. There is better accreditation and more structure to the services. This means that only centres that have the correct facilities for treating children with cancer are involved in the care of children with cancer and shared care is also done in accredited centres.

I think what is challenging is that if you have a child with a particular cancer, advances and changes in treatment options seem to be very slow within that child’s treatment period or lifetime. It actually takes years to get a new treatment tried and tested in the pre-clinical setting before you can use it in a child at all, then to use it in children to see if you are making improvements. 

In this day and age when everything moves very quickly, it’s extremely challenging for families because they simply don’t see things improving in a time span that’s valuable and realistic for them. I can see things have improved if I look back thirty years, but if you have a child aged eighteen months who is sick now, you’re not able to wait another five, ten, fifteen years for us to find the right thing to make the difference for your child.

Research

How important is research to the treatment of childhood cancer patients?

Research is essential. There needs to be basic research – to discover treatments that can target particular tumours – and there needs to be pre-clinical research to test those treatments in animal models before testing them in children.

All of this is research and all of it needs to be funded. It also needs to be done in a very safe, correct, ethically- and regulatory-approved setting.

In the documentary, through our care for Chiane, what you see is us introducing a new combination treatment. This particular double transplant technique was pioneered in Milan, which is why it is called the Milan treatment. The drugs we use are familiar, but it is using them in a pattern that has shown to be useful in this particular disease and seeing if we can improve the cure rate using that same pattern.

How has this impacted on survival rates with rare forms of cancer?

The only way to impact the survival rate in rare forms of cancer – and all childhood cancer is rare – is by introducing new treatments and comparing them with older treatments to see if the new treatments are better. To do that you have to select groups of patients who have a similar disease, are a similar age, and compare one treatment you know against the new treatment.

We have recently completed a trial in Europe for neuroblastoma. This is a trial that I lead on in the UK. We have shown that one particular form of high-dose treatment together with bone marrow transplant, using the stem cells from the child themselves, is better than another form.

It took us eight years to run the trial across Europe and treat enough patients to prove the difference between one way and another. The difference is a 15 per cent improvement – an increase in survival – at three years for that particular European high-dose treatment versus an American treatment.

 It is only by comparing the two that you know which one is better. The European treatment is now being taken on and used across the globe, but it has taken eight years to show that.

How rare are the forms of cancer shown in the documentary?

All of the children in this documentary have rare forms of cancer, even for children.

The most common forms of cancer in children are leukaemia and then brain tumours.  But, even within the field of brain tumours, the type of brain tumour that Chiane had is extremely rare. She’s got a type of brain tumour known as a medulloblastoma that normally comes in the hindbrain (the back of the brain that includes part of the spinal cord and brain stem). Although a medulloblastoma is a relatively common brain tumour in children, very sadly, Chiane has this tumour in the main part of her brain. That makes it much more challenging to treat.

Decision-making process

How difficult can it be to decide on the correct treatment for a patient?

The majority of children we diagnose in the UK with cancer will fit into a treatment plan. It’s highly likely to be a clinical trial because we always treat on a clinical trial if possible.

When a child has a rarer form of cancer it may be that there isn’t a trial open for them in the UK, or anywhere, for that matter, at that particular time. Then you need to opt for the best possible treatment plan, put together by experts in this country looking together at all the possible treatments that have been published or have been shared at international meetings. We would then treat the child according to what we think is the best option.

Then there is the difficulty of a child who has standard treatment in a clinical trial but the disease progresses or comes back. For some diseases we do have quite clear relapse clinical trials or protocols. For others, we have guidelines or treat them individually depending on what has come back, where it has come back, what treatment a child has had before and what options are left to use.

How do you guide a parent through the decision-making process?

The first thing we do is share information with each other in the hospital. Our team will then share with the UK-wide team of paediatric oncologists. Often we are working members of the international groups for these diseases, so we liaise with our international colleagues.

All of this goes on behind the scenes. Once we have liaised and we are confident we have the best approach – or we have a possibility or a choice to offer – we will sit down and spend a lot time with the family. We talk them through the diagnosis, the prognosis (potential outcome) and the treatment options that we have. We then discuss the treatment options that are available here and, in the situation of a relapsed tumour, what is available elsewhere too.

Most parents are open and honest and share their concerns and anxieties with us. They will bring us information they have got from elsewhere and discuss it with us. We also give parents an opportunity for a second opinion if they want one and then we come to an agreement together about treatment. Usually all of that is very straightforward. It isn’t easy but it is clear.

How much information do parents receive about their child’s condition, especially when the condition is rare?

We give them as much as they would like to have. We also advise parents on certain good safe sites to go to on the Internet. We suggest that they do not go randomly on the Internet as they may find a lot of frightening information. We advise them to come back to us with what they have found to put it into context.

We also advise them were possible not to search too widely because it can be very disturbing and they need a lot of energy to support their child and to support themselves.

What emotional support does GOSH offer families as they make decisions about treatments?

There is support for patients from nurses, play specialists and other team members such as the school staff. Parents can also get support from each other and Macmillan social workers and other support staff and, if they want it, they can also get clinical psychology support.

It is very challenging for patients who are diagnosed as an outpatient, come in for day-care and go home quickly. They possibly struggle to get enough support. Parents often say they would like more access to local support when they are ready for it rather than having to go out and find it for themselves. However, there are good voluntary services and hospices that take families and support families for respite care.

What support is available to staff in decision-making and the potential consequences of the actions taken?

We support each other enormously. I am incredibly fortunate to have a super team of colleagues because I can’t treat cancer on my own. I need the expertise of everyone else in this hospital. GOSH is made up of the most amazing people. I came from Belgium to work here, moving my family to work in England with these fantastic colleagues.

If you have a tumour you have treated with chemotherapy – shrinking it down as far as it will go – you are not a surgeon so you are not going to take it out yourself. You want to be working with the best surgeons. If you have a child and you need to give them radiotherapy, you want a colleague who will do it for you in the best and most caring way. You get that here. That’s what makes it worth it.

We do have access to additional support when we are really exhausted. We are very fortunate that our trustees understand the impact of the work we do and the strain it can cause over time and we have an option to take a sabbatical.

Documentaries

What was it like having documentary makers involved in your consultation with and care of patients?

They were absolutely lovely. We got on very well with the team. They were very discreet and very careful. There were times when it was awkward because asking a patient right up front whether they could cope with having the BBC with them was very difficult. Having families who had time to get used to their situation and then be presented with the option was better.

Is there anything you had hoped to convey that didn’t make the documentary’s final cut?

Overall, to be fair to the film crew, I think they learned all of the challenges that we faced and they picked it up incredibly well. At the beginning they knew nothing about our work, but by the end they knew exactly what we were challenged by. I thought they were brilliant and very sensitive.

What perhaps doesn’t come across enough in the documentary is how totally dependent we are on the nursing staff, the pharmacists, the cleaners – and everybody else. The documentary focuses on us because we make the decisions, but there is no way we could treat children with cancer without all of the support or all of the services that go into the day-to-day delivery of care. We are also very glad to have Pals, this is a wonderful service.

As consultant oncologists we manage the child’s treatment. We observe, examine, research and analyse results and then we advise on the best treatment. We rely enormously on radiologists, and pathologists for the diagnosis and nurse specialists, pharmacists and other staff to deliver the treatment. We are totally dependent on the parents and a very competent network of people both at GOSH and closer to home who actually look after the child. Without all of them and their constant input we could not treat children effectively.