Our young patients have complex needs: this is how we meet them
Patient Tia with her mum at the Oak Centre For Children and Young People
Five years ago, TRH the Duke and Duchess of Cambridge opened one of the largest comprehensive children’s cancer centres in Europe: The Royal Marsden’s Oak Centre for Children and Young People (OCCYP) in Sutton.
Funded by The Royal Marsden Cancer Charity, the £18-million centre doubled our patient capacity – we’re now treating 600 inpatients and more than 5,000 day patients every year. Aside from being the principal treatment centre for all children with cancer in the South Thames area (which includes Kent, Surrey and Sussex), the OCCYP is home to one of Europe’s largest drug development programmes in paediatric oncology.
Dr Julia Chisholm, Head of the OCCYP and Consultant Paediatric and TYA Oncologist, says: “We are a comprehensive children’s centre, treating leukaemia, lymphoma, solid tumours and brain and spinal cord tumours. Our multidisciplinary team treats patients aged one to 16 in a specialist age-appropriate facility with chemotherapy, radiotherapy and surgery, using advanced diagnostic imaging and pathology techniques. Patients aged 18 to 24 require age-appropriate young adult care and may receive this under an adult team, a paediatric or teenage young adult team, or a combination of both.
“We’ve been treating childhood cancers at The Royal Marsden since the early 1970s, but the OCCYP gave us purpose-built facilities for children and young people – including a laboratory to increase our work in drug development for patients who no longer respond to standard treatments. We also have one of the largest stem cell transplant services for patients with malignant disease in the UK.”
In addition to the clinical advantages of the OCCYP, the overall benefits for patients and families have also been greatly enhanced. “Our young patients receive excellent holistic care from the wider multidisciplinary team alongside their medical treatment,” says Dr Chisholm. “Sessions in the therapies room with occupational therapists, physiotherapists and dietitians allow onsite support, while the play room, teenage hang-out areas, school rooms and parent areas all contribute to an improved experience for patients.”
Research and treatment
The OCCYP’s drug development team prides itself on accessing the most promising and advanced novel drugs for the benefit of young patients and using them within the context of innovative international early-phase clinical trials. Our team’s outstanding work in leading and initiating trials was awarded a top score by the Innovative Therapies with Children with Cancer consortium in 2015. This prestigious designation recognises the OCCYP’s drug development programme as one of Europe’s best and reflects the team’s growth.
The number of Phase I and II drug trials available for children and adolescents has increased from just seven in 2009 to 23 in 2016, with 19 now open to recruitment. More than 100 young patients have been recruited to trials since the centre opened, and the team also offers a broad international programme of Phase III clinical trials for patients at earlier stages of treatment.
Dr Lynley Marshall, Consultant in Paediatric and Adolescent Oncology Drug Development, explains that the team has built on the expertise and success of the Trust’s well-established adult facility: the Oak Drug Development Centre.
“We are unique in that we have an expert adult drug development team that can provide us with excellent leads on promising new drugs and partnerships,” she says. “Trials for children and adolescents are conducted in a safe, controlled way using drugs that have been thoroughly tested first in adults."
The team includes specialist consultants, research fellows, research nurses, data analysts, managers and trial co-ordinators – key infrastructure for successfully running a large programme. It also has direct links with The Royal Marsden’s academic partner, The Institute of Cancer Research (ICR).
“A third of our patients now come from outside our catchment area, which is mainly due to the fact that we offer more new drug trials than any other centre, while offering high-quality clinical care, hope and support to families,” says Dr Marshall. “It’s incredibly rewarding when a patient has a good response to a new drug. Like in adult drug development, we can have patients who move from trial to trial with an excellent quality of life over long periods of time.
“We’ve also been able to harness personalised medicine approaches for our young patients. One of our most innovative research trials is the NIHR-funded molecular profiling study, which opened this year and is being run in partnership with the ICR. It’s hoped that we will be able to match patients to a treatment by analysing 72 genes that commonly mutate in cancer. It’s exciting – we predict that this will benefit many of our patients in the future.”
A caring environment
The OCCYP offers modern, spacious facilities with age-appropriate areas for both inpatients and outpatients. The ground floor houses outpatients and the inpatient McElwain Ward for children aged one to 15, while the top floor houses the Teenage Cancer Trust Unit for nine inpatients aged 16 to 24. Both McElwain Ward and the TCT Unit have dedicated radioisotope suites and HEPA-filtered isolation rooms for stem cell transplants, alongside school/education facilities, play/chill-out areas and kitchens with dedicated chefs to cater for the varying age groups and needs.
In addition to the team of nurses caring for patients and their families, clinical nurse specialists and research nurses are there to guide, support and co-ordinate patients and parents through the treatment pathway. They also ensure that the shared care working agreements with 16 hospitals in the southeast region run smoothly, so that patients can receive non-specialist treatment closer to their homes.
Carly Snowball, OCCYP Matron, says: “We are extremely proud of the facilities we can offer as we recognise that it is a particularly difficult time – not only for young patients but also for their families. The OCCYP was built with a lot of patient consultation, and we’re seeing first-hand how valuable their input was. Our specialist nurses look at the holistic needs of each family and coordinate treatment around their lives. Schooling and holidays are an important part of family life, so we try to work treatment around these considerations when it is clinically safe to do so.”
This type of personalised treatment also extends to the centre’s bespoke catering service for both inpatients and outpatients and their families.
Shirley Moore, OCCYP Head Cook, explains: “We have served up 155,000 meals in the OCCYP’s two kitchens since it opened. We cook whatever our patients would like to eat, as their taste buds often change with treatment. We’re always looking at new ways to encourage patients to eat, such as hosting parties for the younger children and brunches – over 170 to date – for the teenagers.”
We cook whatever our patients would like to eat, as their taste buds often change with treatment
Learning through play
Our play specialist team has a vital role in preparing our young patients for, and supporting them throughout, their cancer treatment. The team of four, based in the OCCYP, explain complex procedures – such as radiotherapy, stem cell transplants, tube and line insertions, and scans – in a child-friendly, easy-to-understand way.
Kate Hodgkiss, Play Specialist, says: “One of our most notable achievements is a 100% success rate of children aged over three, who are referred to us, not needing a general anaesthetic for radiotherapy. We adapt dolls, use distraction techniques and arrange visits to the radiotherapy department prior to treatment to help lessen any anxiety the young patient may have.
“We also accompany the children to various departments in the hospital that are outside the OCCYP, for example for scans and radiotherapy. Cancer treatment can be very complex, so it’s up to us to help children understand what will be happening to them.”
A parent's perspective
Sarah Fookes, mum of four-year-old patient Grace Roberts-Fookes
“Grace was diagnosed with adrenal cortical carcinoma in 2014. She had chemotherapy but this didn’t work, so we came to The Royal Marsden. At that stage, we were willing to try anything.
“Grace is now on an immunotherapy drug trial and is doing really well. It’s her third trial – she has been on it since the beginning of this year and has had few side effects. She loves coming to the OCCYP as the team all encourage her to do the things that she should be doing at her age. She adores her consultant Dr Lynley Marshall and always gives her a big hug.”