Introduction
Children with cancer need a large number of specialist services, some of which must be on the same site as very specialist cancer treatment services, and some of which, if not on site, must be readily available for patients.
Both Evelina London Children’s Hospital and St George’s Hospital (the options for the future Principal Treatment Centre that this consultation is about), provide specialist children’s services which are not available at The Royal Marsden, including a Level 3 children’s intensive care unit that can give life support to the most seriously ill children.
The following information explains what each service does and when a child with cancer might need these services for both:
- Services which must be on-site at the Principal Treatment Centre, and also;
- Services which do not necessarily need to be on-site for a Principal Treatment Centre but must be readily available at all times.
| Services which must be on-site for a Principal Treatment Centre | What this service does | When a child with cancer might need it |
|---|---|---|
| Children’s anaesthetics and pain management | Stops children with cancer feeling pain. Also makes it possible for them to have the treatments and checks they need. General anaesthetics are medicines that send children to sleep during surgery and other essential procedures so they do not move or feel pain while these are carried out. Local anaesthetics numb an area of the body. They can prevent and treat pain in that part of the body. They don’t send patients to sleep. Children under five years old will need general anaesthetics for some procedures that older children can have local anaesthetics for. | Examples of when a child with cancer might need ageneral anaesthetic include when they have: – surgery – a tube inserted via their nose to give them food and fluids – radiotherapy – diagnostic and follow-up tests, such as MRI, CT scans. Pain management: special pumps are used for pain relief medication. Highly skilled teams are available 24/7 to ensure the safe and effective operation of these pumps, which are connected to a central line for medication delivery. |
| Children’s blood cancer (haematology) services | Diagnoses and oversees the care of children undergoing treatment for leukaemia and lymphoma and having stem cell transplantation. | 41% of children aged 0-14 diagnosed with cancer in England between 1997 and 2016 had a blood cancer – one of the types of leukaemia or lymphoma. (Data from Public Health England’s Children, teenagers and young adults UK cancer statistics report 2021. Available from: http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/cancer_in_children_teenagers_and_young_adults/) Treatment for blood cancers may involve: – diagnostic tests usually under general anaesthetic – red blood cell or platelet transfusion, intravenous fluids, antibiotics if they have a fever – chemotherapy and, in some cases, steroids. Children with leukaemia will usually require special chemotherapy medicine to be given in the spine, to prevent relapse in the future – targeted immunotherapy. Children whose leukaemia is higher risk or comes back after treatment may need a stem cell transplant. |
| Children’s cancer pharmacy services | Provides medicines and advice about how to take medication and what side-effects to expect. | Anti-cancer medicines are needed as part of the treatment for many children’s cancers. Children’s cancer pharmacy services are involved in prescribing and ordering these treatments. They also support the wider team in giving medicines to children and managing expected side-effects. |
| Children’s cancer (oncology) services | Diagnoses and oversees care of children undergoing treatment for solid tumours including brain, spine and central nervous system tumours. | Of all children aged 0-14 diagnosed with cancer in England between 1997 and 2016, 25% of them had a brain, spine or central nervous system tumour, 6% had a soft-tissue tumour, 6% a kidney tumour and 6% had a peripheral nervous cell tumour (such as neuroblastoma). Other rarer types of cancer affected less than 5% of all children with cancer. (Data from Public Health England’s Children, teenagers and young adults UK cancer statistics report 2021.) Treatment for solid tumours may involve: – biopsy or removal of a lump, which will be reviewed by a pathologist – chemotherapy – an operation to remove the tumour and/or radiation therapy to treat the affected area. |
| Children’s intensive care (Level 3) | Level 3 paediatric intensive care units provide care for children requiring intensive care and monitoring, including children so ill that they need life support. | Newly diagnosed children may need support in a children’s intensive care unit if they have high numbers of abnormal white blood cells impacting their ability to resist infection, or breathing difficulties due to a tumour. During treatment, children with cancer may need support in a children’s intensive care unit for complications such as severe infection, or side-effects of treatment. |
| Children’s radiology services | This service supports the diagnosis of disease (cancer) and guides treatment decisions | Children with cancer need imaging services at every stage from diagnosis through treatment to management of ongoing side-effects. Play specialists help patients to understand what is happening and to stay still during the scan to ensure high quality results. |
| Children’s surgery, to include management of emergencies, central lines and biopsy services (where these are not provided by interventional radiology or anaesthetics) | This service supports the diagnosis and treatment of children with cancer. | Almost all children undergoing cancer treatment will have surgical lines placed into their large blood vessels (central lines) for the delivery of chemotherapy and other medications, as well as regular blood tests. These are thin flexible tubes that are inserted into a vein and used to give patients medicines or fluids that they are unable to take by mouth. Paediatric surgeons are responsible for placing these lines and their long term care. The surgical team will also look at suspected but not confirmed tumours and do a biopsy (a test which will show whether the tumour is cancerous or not.) Surgeons also work with oncologists, specialist paediatric pathologists and others to obtain biopsies of tumours to better identify the specific tumour type and guide optimal treatment. Children’s surgeons also help manage complications of treatments. |
| Therapy services (such as psychology, physiotherapy) | Therapists assess, diagnose, treat, and support patients of all ages, diagnostic groups, and at all stages of the treatment pathway, including palliative care and managing late effects. They actively participate in ward rounds and multi-disciplinary team meetings including as part of specialist and community services. They ensure ongoing support for children’s developmental needs during cancer treatment, partnering closely with the schoolroom, play team, and catering service to ensure social and developmental requirements are met. Psychological services help prevent and treat complex psychological difficulties in children with cancer and their families. | Children with cancer have a wide range of therapy needs. These vary depending upon the age of the child, their diagnosis and treatment plan, and any other conditions they have. For example, a patient may need: – a therapeutic massage and aroma stick to help with anxiety – an enteral feeding tube which delivers food, fluids and medication straight into their tummy – an exercise programme and therapy to reduce long-term nerve damage – help with doing what they want to do as part of daily living, including help with managing their tiredness – help with communication difficulties – psychological support. |
| Services which do not necessarily need to be on-site for a Principal Treatment Centre but must be readily available at all times | What this service does | When a child with cancer might need it |
|---|---|---|
| Cardiology | Deals with finding and treating all kinds of heart problems. This can be using ultrasound (echocardiogram), and/or other scans like MRI and also looking at the electrical activity of the heart (ECG). | One of the most commonly used and effective types of treatment for childhood cancer, called anthracyclines, is used to treat approximately 70% of childhood cancers. While they are very effective at treating cancer, they can cause damage to the muscle of the heart (cardiomyopathy) and make it weaker. So, it’s important that before, during, and after treatment there is close and careful monitoring of the child’s heart. The team needs a good understanding of how the heart is functioning beforehand and coping with the cancer treatment so that they can identify any impact of the treatment on the heart quickly, and help the cancer team to modify cancer treatment, thereby helping the heart recover. They also may need images of the heart if there is a concern of infection and if the child becomes acutely unwell requiring intensive care. Some children may also develop a problem with their heartbeat and require ECGs and other tests to assess how to manage this. |
| Children’s cancer surgery | Paediatric surgeons are specialist surgeons who are highly trained to provide general surgery for children. Some paediatric surgeons specialise in the management of cancers that affect the solid organs of the body (such as kidneys). | When a child has a solid tumour, specialist paediatric oncology surgeons undertake the operations to remove these from the body or reduce them if total removal is not possible. Treatment for cancer can be tough on the body, and sometimes procedures are needed to support children through the treatment such as gastrostomy tubes to support feeding. Also infections can occur when the child’s immune system is weakened, this can lead to further more serious complications which may require surgical input. An example of this is typhlitis which is a condition where the intestines become inflamed and surgery is needed. |
| Children’s infectious disease services | Investigates and treats children with infections or problems with their immune system. | Almost all children will develop an infection at some point during their treatment for cancer. Usually mild infections can potentially become very serious in children with cancer. Children can be admitted to hospital with infections many times during their cancer treatment. Treatment for these infections may require prolonged courses of several antibiotics and long stays in hospital, including intensive care, or surgery. Some children recovering from cancer treatment need ongoing follow up of their immune system. (Information about how often children attend hospital for cancer treatments is in the data appendix to the pre-consultation business case.) |
| Children’s pathology (investigates and identifies cancers) | Uses microscopy and other techniques to look at tumours and other organs to identify the cause and nature of diseases. When children die, pathologists undertake post mortem examinations to help better understand why they died. | When cancer is suspected, a tissue biopsy is undertaken to see if it is cancer and, if so, what type of cancer it is. Paediatric pathologists assess this tissue using many different techniques, and make the diagnosis, giving key facts that help oncologists and surgeons to plan the best course of treatment. Once the tumour has been removed, pathologists assess the tissue to help guide further treatment (if necessary). |
| Endocrinology | Investigates, diagnoses and treats patients with hormone-related disease | Hormonal problems are among the most frequent complications in childhood cancer survivors, affecting up to half of them. They are frequently late effects of cancer treatments. Growth, pubertal and thyroid disturbances are the commonest problems in childhood, with impaired fertility, reduced bone mass/body composition and abnormal glucose homeostasis (regulation of blood sugars) potentially occurring later on in life. Some hormonal problems can be life threatening if not recognised and treated. Children’s and adult endocrinologists (doctors who specialise in treatment of hormone-related disease) with special expertise in late effects will monitor, assess and treat childhood cancer survivors throughout their lives. |
| Gastro-enterology | Investigates, diagnoses and treats patients with diseases of the digestive system (gullet, stomach, bowel, liver, gallbladder, and pancreas). This can be with the use of cameras to look inside the bowel (endo and colonoscopy) as well as specialist blood tests and scans. | Virtually all children with cancer will have gut symptoms at some point due to infection or the impacts of treatment (including chemotherapy, bone marrow transplant). Specialist input from a gastroenterologist is required in about 20-50% of patients for cancer diagnosis, diagnosis of feeding issues, complex infection involving the digestive system, and diagnosing and managing bone marrow transplant complications like graft vs host disease. Some children will have gut failure, and a gastroenterologist will guide specialist nutritional support including feeds given directly into veins (parenteral nutrition). |
| Genomic testing* | Finds changes in genes that can cause health problems | Genomic testing is transforming how cancer and rare diseases are diagnosed and treated by delivering a more personalised diagnosis. This is important for children with cancer because it means the genetic makeup of every tumour can be looked at in detail. This can help doctors to understand whether a genetic change has caused the cancer and to plan more targeted (and so potentially more effective) treatments. Children with cancer will also be able to have a test which may give more information about their condition and treatments. This test is about identifying children’s cancer or tumour type and linked genes. There is a small chance it may also show whether a child has a higher risk of getting further cancers and if these risks may affect other family members. As well as benefiting patients now, sequencing whole genomes of thousands of patients is hugely important for research. It is helping medical teams’ to increase their knowledge and understanding of the role people’s genes play in their health. |
| Kidney services (also known as nephrology) | Kidney services (also known as nephrology) detect and treat all kinds of kidney problems. | The medication and advanced therapies that are used to treat cancer can impact kidney function. This may require input from nephrologists (kidney specialists), both in the hospital and also in follow-up appointments to achieve the best outcome. |
| Neurosurgery | Neurosurgeons care for people with diseases of the brain and spinal cord. In children’s cancer, they work with oncologists and other specialists to diagnose and treat cancers of the brain and spinal cord (which affected one in five children with cancer in south London and the south east in 2019/20) and treat complications that arise in the brain (such as bleeding) from treatments for other cancers. | When a child is diagnosed with a brain or spinal cord tumour, they may need urgent surgery to treat the effects of the tumour. Biopsies may be required to accurately identify the tumour type to plan the best treatment and definitive surgery is often required to remove the tumour. Neurosurgeons continue to manage the child with other specialists such as specialist neuro-radiologists, endocrine specialists, palliative care doctors and others to manage the long-term impact of having a nervous system cancer. |
| Ophthalmology | Investigates, diagnoses and treats patients with disorders of the eye and visual system | This service is essential for the assessment and monitoring of visual development when receiving cancer treatment. |
| Other specialist paediatric surgery | Surgery for children from pre-birth to 18 | Specialist surgery that a child with cancer could require includes ovarian and testicular tissue cryopreservation, which offers young children undergoing complex cancer treatment that may affect fertility the opportunity to have a family in the future. Children with cancer may also need other types of specialist paediatric surgery, such as children’s ear, nose and throat surgery, |
| Palliative care | Palliative care services support people with life-limiting and life-threatening conditions, providing specialist symptom management, discussing advance care planning, and supporting end-of-life care. | This team would provide symptom management advice during active cancer treatment. When a child cannot be cured, the paediatric palliative care team would support families with symptom management, advance care planning and end-of-life care. This is a 24/7 telephone advice service for families and professionals. This includes access to bereavement support. Many teams including local paediatric services, community services, continuing care, specialist nursing teams, schools and local hospices work together to make sure that all aspects of a child’s care and family support needs are fully addressed. |
| Radiotherapy | A treatment where radiation is used to kill cancer cells. There are two main types of radiotherapy: – conventional radiotherapy, which uses high-energy x-rays (photon beams), – proton beam therapy, an advanced form of radiotherapy that uses beams of high-energy protons. Other specialist types of radiotherapy treatments are available and can be used to treat children with cancer in other ways. | Many children diagnosed with cancer receive external beam radiation therapy – radiotherapy – as part of their treatment. Children with cancer will often receive conventional radiotherapy as part of their cancer treatment. Total body irradiation (using photon beams) is required by up to 10 children a year in preparation for a bone marrow transplant. After completing high dose chemotherapy, they need radiotherapy treatment twice a day for three to four days before they can have their transplant. This is often provided as part of a hospital stay. Proton beam therapy limits the dose of radiation to the surrounding normal tissues, which means there is the potential for less damage to normal tissue. This is particularly advantageous in children who are still growing as it can potentially reduce long-term side effects. As the very specialist proton beam therapy service continues to be developed, it is anticipated that more children with cancer who require radiotherapy treatment will, in future, receive proton beam therapy instead of conventional radiotherapy. It is not suitable for treating all types of cancer. Radiotherapy can be given at the start of cancer treatment. for example, for brain tumours, or other solid tumours, and occasionally for blood cancers like leukaemia. It can also be given if cancer recurs following treatment (relapse) and/or to help relieve symptoms related to the cancer. Patients requiring radiotherapy may often need to attend daily for radiotherapy for a number of weeks. |