This page has been written for parents and carers whose child is having proton beam therapy (PBT) at University College Hospital (UCH). We hope that you find this page useful. We will be pleased to answer any questions or offer advice during the course of their treatment.
Proton beam therapy (PBT) is a type of radiotherapy. Protons are small particles found in the middle of atoms. Protons can treat a cancer lump with limited damage to surrounding tissue. PBT is different to photon radiotherapy. Photon radiotherapy uses high energy X-rays not protons.
A machine called a cyclotron produces the proton beam. The PBT is delivered through a machine called a gantry. While your child lies on a treatment couch, the gantry can rotate through 360 degrees. So, the proton beam can be accurately directed to the area needing treatment.
Although relatively new to the UK, PBT has been used to treat complex child and adult cancers around the world for many years. UCH is proud to be one of only two NHS PBT departments in the UK. The second NHS PBT department is at The Christie Foundation Trust in Manchester. The Christie has been treating patients using PBT since 2018.
Our multi-disciplinary team includes doctors, physicists and radiographers. They have had extensive specialist training, and work with world leading PBT centres to safely and accurately deliver PBT to our patients.
At UCH, the gantries use pencil-beam scanning. Pencil-beam scanning uses a narrow beam of protons to move back and forth across the cancer. The energy of the beam varies depending on how deep the cancer is. Your child’s doctor, also called a clinical oncologist, may use PBT alone or they may combine it with photon (X-ray) radiation therapy, surgery, and/or chemotherapy.
The potential benefits of PBT are:
- It can treat the cancer without damaging healthy tissues around the cancer. PBT is often used to treat cancers in children and young people, since damaging healthy tissue can cause more problems.
- A higher radiation dose can be given since it damages less healthy tissue than photon radiotherapy. This may stop the cancer growing or spreading.
- Your child may have fewer and less severe side effects during and after treatment.
We want to involve you and your child in all the decisions about their care and treatment. If you decide to go ahead with treatment, by law, we must ask for your consent, and will ask you to sign a consent form. This confirms that you agree to your child having PBT and understand what it involves.
Staff will explain all of the risks, benefits and possible alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your child’s proposed treatment, please speak to the team looking after them.
At any time before your child starts treatment, you can discuss anything that you do not understand, or ask any questions with their clinical oncologist. Should you decide to withdraw your consent for PBT, the PBT team will discuss the possible alternatives with you.
Both during and following your child’s PBT we aim to provide the highest standards of care. We support you in your decisions regarding your child’s treatment. We will always respect your child’s dignity, individuality and personal preferences.
Your child’s care will be managed and given by therapeutic radiographers, doctors and nurses. They will meet both male and female healthcare professionals during the course of their treatment. If you, or your child, have any concerns about this, please talk to the radiographers. We try to be sensitive to everyone’s needs, so please discuss things with the team caring for your child.
If your child is of an age where they can get pregnant (12 years old and over) and capable of becoming pregnant (they have a womb), they will be asked to confirm they are not pregnant.
You must tell the staff immediately if there is any chance of your child being pregnant at any time during their treatment. They should not become pregnant for at least four months after PBT.
If your child is capable of conceiving a child (has testes), they should not try to have a baby for at least four months after PBT. They should use reliable contraception during PBT and for four month afterwards.
If you have any further questions or concerns about this, please talk to your child’s clinical oncologist, their specialist nurse or specialist radiographer involved in their care.
If your child has a pacemaker you should let their clinical oncologist, key worker and/or radiographers know. This does not stop them from having treatment, but they may need simple additional monitoring.
UCH recognises different ways that people describe and identify with their gender and sexuality.
Please let us know what your child’s preferred name is, how they want to be referred to, which pronoun(s) they use to describe themselves and anything else you think we might need to know to ensure they are well looked after and comfortable at UCH.
The PBT bookings team will contact you to tell you about your child’s appointments. They will then send you an appointment letter and information pack.
Your child will get a key worker who will give you help and support throughout their treatment. The key worker will call you before your first appointment to discuss any questions or worries you may have.
Your child’s first appointment at the PBT department at UCH is for an assessment. At the assessment visit you and your child will meet their clinical oncologist and key worker. They will discuss your child’s treatment plan and get your consent for your child to have PBT.
After you have signed a consent form, your child will have treatment planning appointments so the team can plan their PBT. These appointments will be completed over a period of up to five days.
You and your child will meet a lot of people who are part of their clinical team at this appointment. They are all involved in making sure your child gets the best clinical treatment. You will meet them all at your child’s first appointment so you have fewer appointments at UCH. They are likely to include:
- A consultant clinical oncologist, in charge of your child’s PBT at UCH. They will explain what PBT is and will ask for your consent to have PBT.
- A health play specialist who will work with your child throughout planning and treatment and support you as a family.
- The specialist radiographer. They are your child’s key worker.
- Medical oncologists and cancer nurses (if your child is having chemotherapy as well).
- The PBT review team. This team includes specialist radiographers and nurses. They will see your child during treatment to help them manage the side effects of PBT.
Before your child starts proton beam therapy planning and treatment, there will be the opportunity to explore what this will involve for you as a family. You will meet the health play specialists who will spend time getting to know your child’s needs and how best to support the family through treatment.
We have a series of short films and age-appropriate photo books that help to explain the different aspects of proton beam therapy. This allows children and young people the opportunity to ask questions and to gain an understanding of what treatment is all about. The Paediatric team, which includes the Play Specialists and Specialist Paediatric radiographer, will go through step by step what to expect with the treatment planned for your child.
For more information on preparing your child for proton beam therapy you may contact the health play specialists at uclh.
Patients have to lie very still for proton beam therapy. Lying still can be very difficult for some children. Infants and younger children may require a short general anaesthetic for treatment planning and proton beam therapy. This allows the radiographers to accurately deliver the treatment to your child by keeping them in the same position every day during treatment.
Treatment planning appointment is where we gather all the information we need to plan your child’s PBT.
When your child has PBT planning and treatment appointments, they have to lie very still. This helps us to aim the treatment at the correct part of their body. To help them keep still and in the correct position, they may have to have a mask or immobilisation device made.
The type of mask or immobilisation device will depend on the area of their body being treated. The radiographers will decide what is best for them. We will give you more information about how the mask or immobilisation device is made at their treatment planning appointment.
CT scan
Your child will have a PBT planning CT scan, so the doctors and radiographers can plan their treatment. They will have some contrast agent injected in to their arm. This may be through a temporary cannula or, if they have been having chemotherapy, through their PICC line. The contrast agent makes the images taken during the CT scan clearer so that the PBT team can accurately plan their treatment.
The radiographers will position your child on the scanner couch in the position they will be in for treatment each day. If they have a mask or immobilisation device, the radiographers will place marks directly on the mask or device. They may also draw some temporary marks, using a felt pen, on their skin.
After the CT scan the radiographers will mark your child’s skin with small permanent dots. We call these dots tattoos. The radiographers will place a dot of ink on their skin and gently scratch the surface of their skin with a fine needle. The tattoos are about one millimetre wide. They are used to place your child in the correct position each time they have treatment.
MRI scan
Your child may also have an MRI scan. If so, the appointment will be on their letter. The MRI scan process is very similar to the CT scan. They will be given headphones so they can listen to music during the scan. They can also select different coloured lighting and animations to watch, to help them feel more relaxed during their scan. An MRI scan normally takes 30 to 40 minutes.
Once all the scans are completed the doctors, physicists and radiographers will work together to plan the best way to treat your child. You will need to wait up to 2 to 3 weeks for your child to start their PBT.
There may be other appointments your child will need to attend during the assessment and planning visit. These may include:
- General anaesthesia assessment
- Physiotherapy
- Occupational therapy
- Speech and language therapy (SALT)
- Dietetics
- Social work
Once you and your child have attended all the assessment and planning appointments, you will get their treatment appointments. You will return home and come back to UCH when treatment is ready to start.
Proton beam therapy is usually given Monday to Friday, including Bank Holidays, but there may be times when your child’s treatment needs to be given over the weekend. Appointment times will be from 7am to 9pm and will be booked in advance.
At your child’s first treatment appointment, come to the reception of the PBT department on floor B3. Once checked in, they will ask you to go to the PBT waiting areas on floor B4. Depending on your child’s age you will be shown to the children or teenage areas. Here, your child can wait in an age-friendly environment. The health play specialists will be there to support and encourage your child to do lots of activities. Alternatively there are games consoles for children and teenagers to play with.
When it is time for treatment you will meet a treatment radiographer who will talk to you and your child about their treatment and what to expect and make sure you know the possible side effects of treatment. You and your child can also ask the radiographer any questions you have. The radiographers will take your child in to the treatment room and ask them to remove or loosen clothing that covers the area being treated.
There are cubicles for changing and gowns available if needed. They will be helped onto the treatment couch. The radiographers will move them in to the correct position for treatment and make sure that they are as comfortable as possible. If they have a mask or immobilisation device, this will be put in the same place as when they had the planning appointment. All they need to do is to stay as still as they can throughout the session.
Each session may take between 20 to 60 minutes to complete, depending on the area being treated. Most of this time is used to take X-rays images. These are done to make sure your child is in the correct position and that the beam is directed to the correct area of their body.
The radiographers and health play specialists will be with your child right up until they are ready to deliver the treatment. Sometimes there is a delay before the treatment starts. The radiographers and play specialists will talk to them while they wait and tell them when the treatment is about to start. There is nothing to see or feel when the machine is delivering the treatment. They may hear a buzzing noise.
Having PBT does not hurt and it does not make your child radioactive. They are safe to be with other people, including children and pregnant women, during and after their course of PBT.
During your child’s PBT there may be occasions when the PBT machines are not available and it is not be possible to give them PBT. They may have to miss one or more sessions. Do not worry if this happens. Any gaps in treatment will be considered by their doctor and a plan made.
The following options are possible, but will depend on your child’s individual circumstances:
- If they are only having PBT they could miss treatment on the day(s) the machine is unavailable.
- They may have photon (radiotherapy) treatment instead. They would need a new treatment plan so they may not start the photon treatment straight away.
- They may be asked to have PBT on a weekend when the machine becomes available again.
- Please do not book public transport to return home immediately after they finish their course of PBT. If there are delays, their treatment may not finish on the day it’s planned to finish.
PBT side effects will vary depending on which part of your child’s body is treated and the PBT dose. Some side effects will gradually appear during the course of PBT and some will appear months or years after PBT. Your doctor will tell you about these side effects during the assessment appointment. You will be given an page explaining the side effects your child may get. There will be plenty of time to talk to their doctor about anything you want to discuss.
Most people notice the side effects during the second half of their course of treatment. These will continue after your child has finished treatment, but they should gradually get better 4 to 6 weeks after treatment finishes. Your child will be supported throughout treatment by the PBT review team.
During treatment your child will be regularly reviewed by their clinical oncologist and key worker to see how they are managing the side effects. They will also be reviewed by the PBT review team, and other health care specialists.
Please let the treatment radiographers or key worker know if you want to speak to one of the PBT review team.
Your child may require chemotherapy and supportive care during their proton beam therapy. Depending on their chemotherapy regime, they will have chemotherapy and supportive care as an inpatient or an outpatient. You and your child will be given detailed information about where their chemotherapy will be given and what facilities are available.
T11 North (T11N) ward- is a paediatric oncology unit providing inpatient and day case treatment and supportive care to children aged 0-12 years with a cancer diagnosis.
T12 North (T12N) ward- is a teenage and young adult oncology unit providing inpatient treatment and supportive care to teenagers and young adults aged 13-19 years with a cancer diagnosis.
Teenage and Young Adult (TYA) Daycare- is a teenage and young adult oncology unit providing outpatient treatment and supportive care to teenagers and young adults aged 13-24 years with a cancer diagnosis. The TYA unit located on the third floor of the University College Hospital Macmillan Cancer Centre.
You can read further information at:
All patient care is provided by highly specialised paediatric oncology, and teenage and young adult oncology, trained nurses and doctors who are supported by a highly specialised team comprising of physiotherapists, occupational therapists, dietitians, speech and language therapists, social workers, youth workers psychologists, activity co-ordinators, play specialists and school teachers.
During working hours please call the proton beam therapy reception or the key worker if your child has side effects or symptoms you are worried about. The number for reception is: 020 3456 8000 / 8001
If your child is experiencing any of the following:
- A temperature over 38.0ºC
- Lethargy with reduced activity
- Vomiting, diarrhoea and not responding to anti-sickness medication
- Not eating or drinking or passing urine
- Develops any rashes, bruising or bleeding
- Any unexplained or unmanageable pain
- Has a cough, shortness of breath or difficulty breathing
- If the Hickman line site or PICC line site becomes reddened
- Any other physical symptoms you are concerned about
Please call the following for further advice:
Children under 13: please call T11 North ward on 020 3447 1102 or the T11 North Nurse In Charge (available 24 hours) on 07929 788096
Children over 13: please call T12 North ward on 020 3447 1202 or the T12 North Nurse In Charge (available 24 hours) on 07908 468555
If your child has any chest pain, difficulty in breathing or severe breathing problems go to UCH A+E or call 999 and ask the ambulance crew to bring them to UCH A+E.
Two to four weeks after your child has finished PBT they will have an appointment with a doctor to see how they are recovering and to decide if they need any further support or treatment. The appointment may be at UCH or at their local referring hospital. The UCH PBT team will tell you where your child will be seen. At the end of treatment, a letter with details of your child’s treatment, any side effects they are experiencing and supportive care they are receiving, will be sent to their GP, their referring consultant, and a copy sent to yourself.
Attending follow-up appointments is very important as it allows us to look for problems that might arise from treatment. This helps us identify any problems early and direct any on-going care that your child may need relating to any long-term treatment side-effects they may have.
Also, this is an opportunity for us to gather a great amount of information that will help us improve the treatments we give to patients in the future. This allows us to continue to deliver high quality, safe and effective treatment.
If follow-up has been arranged at UCH please make every effort to attend. If you wish to cancel your child’s follow-up, please contact us first. If their follow-up has been arranged at their local referring hospital, please remind the doctor to send any letters and results to us.
If you are worried about any treatment side effects or have any other questions, before your child are seen in follow-up, please call the PBT reception, their keyworker at UCH or their key worker/clinical team at their local referring hospital.
Some people may feel emotional, upset, anxious, or have difficulty adjusting to what is happening to them. If you are any of these emotions during your treatment, remember that you are not alone. There are people here who can help you. Try to let a member of the team know how you are feeling. They are here to support you and are never too busy to help.
The radiographers and review team are always available to give you information and support throughout your course of radiotherapy. However, if you would like more time to discuss any aspect of your treatment or to talk about how you are feeling, the Macmillan Information and Support team are available to talk to you and your family.
If you need to discuss feelings or personal issues in more depth you can be referred to the psychology team. They are trained to listen, and to help you explore and clarify your thoughts and feelings, over a period of time.
All staff are here to make sure your treatment goes as smoothly as possible, and to support you and your family through this difficult period.
The Macmillan living room is a space within the PBT department for people having PBT and their carers. Whatever it is you feel you need to talk about, from coping with your emotions, to advice about talking to children or those close to you, we are here to help. You are welcome to come in and have a cup of tea while you wait for your child’s appointment, whilst they are having treatment or gather your thoughts before going home.
We have a range of information about cancer types, tests and treatments, living with and beyond cancer, work and finances, and many other topics. If we don’t have what you need, we will show you where you can find it.
We offer practical support to you and those who support you about financial concerns and work, psychological and emotional support, complementary therapy. If we can’t help, we can direct you to welfare and benefits advice, or signpost you to local services.
The Macmillan Support and Information Service is based on the ground floor of the UCH Macmillan Cancer Centre on Huntley Street. It provides a relaxed and informal space where you and your family and friends can ask questions and talk through your concerns with specialist staff.
Visitors can access a range of information resources. There is also a program of supportive activities to help you to manage treatment side effects and meet other people who have shared similar experiences.
You don’t need an appointment to visit the Macmillan Support and Information Service.
Address: University College Hospital Macmillan Cancer Centre, Ground Floor, Huntley Street, London WC1E 6AG
Telephone: 020 3447 8663
The PBT department is located in the University College Hospital Grafton Way Building.
The department is located on Basement 3 (B3) and Basement (4). The address is:
University College Hospital Grafton Way Building, 1 Grafton Way, London, WC1E 6AS
The PBT department is easily accessible by road, tube and rail. For help planning your journey please visit our website.
Travel expenses can be reimbursed for parents and carers who qualify under the NHS Hospital Travel Cost Scheme. Under the scheme, families on low income or receiving specific benefits may be eligible to receive financial help towards their travel costs from home to UCH or from the accommodation to UCH, if they are living away from home. Please ask the reception staff for an attendance form and take this to the main UCH hospital cashiers office. You will need to bring proof of your benefit, proof of your travel costs and proof of your child’s appointment.
We only provide hospital transport between the proton beam therapy department and the accommodation, or your home address if you live in the catchment area, if there is a medical reason for your child to have it. If you feel your child needs hospital transport, please call the PBT Team on 020 345 68240 who will be able to conduct an assessment over the phone. Please note that it is the responsibility of your child’s referring centre, if you live outside the catchment area, to arrange transport, if required, from your home address to the accommodation.
There is no allocated car parking, except for patients with Blue Badges who are attending UCH. The nearest paid parking is a 10 minute walk from UCH. For further details please visit:
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For information on other parking options in the surrounding area please visit:
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Areas in Camden, south of Euston Road, are not covered by the national Blue Badge disabled parking scheme. If you want to park near, or in, UCLH disabled parking bays you will need to apply for a parking dispensation to use with your child’s Blue Badge.
If you have a question about disabled parking, or would like to apply for a parking dispensation in advance please call PBT reception on 020 3456 8000/8001, or email your query to uclh.disabledparking@nhs.net or telephone 020 3447 9922.
If eligible, accommodation will be provided for your child when they have their assessment visit and for their course of PBT. All patients under 18 can have two adult carers stay with them. You will be sent detailed information about the accommodation. Your accommodation will be:
STAY Camden, 1 Water Lane, London, NW1 8NZ
Please bring your child’s current medication and enough medication for their assessment and treatment stay for your child and any accompanying friends/family (for all pre-existing conditions). Prescriptions for medication made by the UCH doctors during their treatment can only be collected from the UCH pharmacy. Any prescriptions relating to their cancer will be free of charge. Please speak to your child’s key worker for more information.
If you have a physical copy of this page, you can fill out the details below.
My child’s keyworker is:
They can be contacted on:
Proton Beam Therapy Reception
Telephone: 020 3456 8000 / 8001
Proton Beam Therapy Bookings Team
Telephone: 020 3456 8240
Proton Beam Therapy Review Team (via Proton Beam Therapy Reception)
Telephone: 020 3456 8000 / 8001
T11 North Ward
Telephone: 020 3447 1102
T11 North Nurse In Charge (available 24 hours)
Telephone: 07929 788096
T12 North Ward
Telephone: 020 3447 1202
T12 North Nurse In Charge (available 24 hours)
Telephone: 07908 468555
TYA Ambulatory Care (Monday to Friday, 8am to 6.30pm)
Telephone: 020 3447 1837
TYA Ambulatory Care (available 24 hours)
Telephone: 020 3456 7111
Macmillan Information and Support Radiographer
Telephone: 020 3447 3712
PALS is a patient-friendly, easy-to-access service designed to provide a personal contact point to assist parents, relatives and carers. If you have a problem that you have been unable to resolve, PALS can help you.
The University College Hospital PALS office is located on the ground floor of UCH and is open from 09:00 to 16:00, Monday to Friday.
Telephone: 020 3447 3042
Email: uclh.
Macmillan Cancer Support
Telephone: 0808 808 0000
Email: cancerline
Cancer Research UK
Telephone: 0808 800 4040
Young Lives vs Cancer (formerly CLIC Sargent)
Telephone: 0300 330 0803
Shine Cancer Support
Telephone: 07804 479413
Email: hi
Carers UK
Telephone: 0808 808 7777
Email: adviceline@carersuk.org
UCLH cannot accept responsibility for information provided by other organisations.
Page last updated: 04 July 2025
Review due: 01 July 2027