Chelsea and Westminster Hospital NHS Foundation Trust

Children & young people suspected of having cancer need the help of a variety of healthcare professionals to diagnose and treat their conditions.This can be done in a specialised Principal Treatment Centre (PTC), a Paediatric Oncology Shared Care Unit (POSCU) and in the community. Chelsea and Westminster Hospital is a POSCU for children & young people with cancer, which means that much of the care after diagnosis is provided locally by us, with the emphasis on normalising life as much as possible and minimising the impact of the disease. We provide a holistic supportive care service which enables children & young people to receive some aspects of their care as close to home as possible, or at home when appropriate. We can administer less complex chemotherapy and provide supportive care when the effects of chemotherapy lower the immunity. Our unit is run by a multi-disciplinary team, which is made up of a number of different healthcare professionals who work together to look after the children & young people in our care.

The Multidisciplinary Team The Multidisciplinary Team is made up of a number of different health professionals who work together to look after you and your child or adolescent. The team meets once a month to discuss all patients, ensuring all team members are updated on their progress. There is also frequent communication between the Team and the Principal Treatment Centre about the care of your child or adolescent. Paediatric Consultant: Dr Madiha Elsawi is the Lead Paediatrician for Oncology (cancer) and heads the Multidisciplinary Team and will look after your day to day care in conjunction with Dr Wathik Alsaud. Paediatric Consultant: Dr Wathik Alsaud is Deputy Lead Paediatrician for Oncology.

Macmillan Clinical Nurse Specialist (CNS): Jose Cavalcante is the keyworker for children and adolescents on cancer treatment. He will provide support and advice for the children and adolescents and their families throughout the course of their treatment. He also liaises with the Principal Treatment Centres, other staff at Chelsea and Westminster Hospital and the Children’s Community Teams. 1

Pharmacist: Sam Talboy, the Oncology Pharmacist, advises on all medication for children & adolescents, and in particular the prescribing of chemotherapy and other medicines. She will liaise with the pharmacists at the Principal Treatment Centre. Clinical Psychologist: Annemarie Rankin, our Clinical Psychologist, offers support to both children, adolescents and their families. Clinical Psychologists who work with children & adolescents can offer support in a number of ways. Sometimes this may involve a particular problem such as a difficulty in cooperating with medical procedures, and sometimes the support is more general and provides the time and space to think about the implications of an illness and how these implications may best be managed.

Children’s Community Nursing Team: Throughout your child or adolescent’s treatment you will meet your local Children’s Community Nursing (CCN) Team. Teams from different areas differ in their service: the hours they provide and the type of care given. The Community Nursing Team is able to obtain blood samples at home, school or nursery. The nurses will deliver the blood sample to your shared care hospital and liaise with you and the hospital about results. The nurses on the team will get to know you and your child or adolescent well during their treatment and will be available as a source of advice and support. The CNS or PTC will inform you of the phone number of your local Children’s Community Nursing Team depending on your geographical area.

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Access to other services Members of the team can make referrals to other services as & when required. Social Worker: Our hospital Social Worker is available to assist families where there is a problem relating to your child or adolescent’s stay in hospital and when you may require ongoing services in the community. Paediatric Dietician: Our hospital Paediatric Dieticians work closely with the Lead Paediatrician and liaise also with dieticians at the Principal Treatment Centre when appropriate. Education: When your child or adolescent has to stay in hospital, the Hospital School Teachers can talk to your child’s school and arrange for school work to be done in hospital, if your child feels up to it. Play Therapist: Children or adolescents may find it easier to express their feelings and emotions through play. Our Play Therapists can help children or adolescents to deal with the many investigations and blood tests that they have to undergo. Play specialists attend outpatient sessions and also work with children or adolescents on the ward, both in play and to prepare them for theatres or specific investigations. Physiotherapist, Speech and Language therapist: If your child or adolescent is an inpatient and needs to see any of our hospital based Therapists,they will be more than happy to assist. Our therapists will liaise with their counterpart at the Principal Treatment Centre as necessary. If therapy is required as an outpatient, then a referral can be made to your local community therapy service. They can see your child or adolescent at home, at the centre or in school, depending on his or her changing needs. The Macmillan Centre: Our purpose-built cancer information and support centre is based on the ground floor in the Medical Day Unit. It stocks a wide range of free information in many formats and you can arrange to meet someone for regular support. In addition, you can book yourself in for sessions of massage, aromatherapy or reflexology to help you to relax. Chaplaincy: The hospital provides a multi-faith Chaplaincy, representing Jewish, Muslim and Christian faiths. They work with people of all faiths and those not attached to any particular faith or community. The Chaplains visit all wards on a weekly basis and welcome your request for a visit.

How can you help us care for your child? Always bring your shared care oncology parent-held record with you Always identify yourself to staff as a shared oncology parent when talking on the phone and give details of your child or adolescent. If your child or adolescent is admitted to hospital for any reason, always bring all their medication with you. 3

Hospital Admissions All oncology children or adolescents have direct access to the ward during treatment and up to six months post treatment, should they need to be reviewed or admitted, thus bypassing the Emergency Department. The most commonly encountered problems during treatment which require your child or adolescent to attend hospital are usually due to the effect of chemotherapy. These might include low red blood cells, low platelets, high temperature, with or without a low white blood count, or nausea and vomiting. During an admission, tests will be carried out and they may receive antibiotic treatment. It is not always possible to predict the length of time your child will need to stay in hospital. This will depend on many factors and every case is individual, but we promise to keep you updated daily on the progress of your child or adolescent’s case. Other problems may require admission which is arranged either through the CNS or specialist registrar. With any hospital admission the PTC will be notified and will be regularly updated. If your child or adolescent requires blood products (blood or platelet transfusion) this can be arranged to be given as a day case. Chelsea and Westminster paediatric unit has four children’s wards: Neptune; Mercury; Jupiter and Saturn. Most children are admitted to Neptune ward and adolescents to Jupiter ward. Your child or adolescent will be nursed in en-suite cubicles where possible. In the unlikely event that this is not possible, patients are nursed in a cubicle next to one of the ward bathrooms with that bathroom being kept exclusively for the use of the immunocompromised child or adolescent.

Day Care Facilities There are 2 oncology clinics per week - Tuesday afternoon and Friday morning - in the Paediatric Ambulatory Care Unit PACU for our patients currently on active treatment or within 6 months of finishing treatment. During these times, the facility including waiting area is used exclusively for oncology patients. These clinics are utilised for the administration of chemotherapy, planned reviews, planned blood tests and are run by the CNS, a nurse trained in chemotherapy administration and designated specialist registrar. The lead and deputy consultant paediatricians will be on site and available as appropriate. A play specialist is available to provide age-appropriate play equipment and distraction

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Blood Results and parent queries Your child or adolescent’s community nurse will usually take routine weekly blood tests. They will then inform parents, the Principal Treatment Centre and the Chelsea and Westminster Paediatric Registrar or Clinical Nurse Specialist of these results, in case any action needs to be taken (such as changes in medication or blood transfusions). If you have any other query, please do not hesitate to speak to any member of your medical team during office hours. If you have an URGENT query after 5pm on a normal working day, or during a weekend, please contact the Paediatric Registrar on call via our Hospital Switchboard on 020 3315 8000 and ask for bleep 8686. Always identify yourself as a parent of an oncology child.

Contact numbers of Members of the Multidisciplinary Team Dr Elsawi, Consultant Paediatrician

020 3315 1635

Dr Wathik Alsaud, Deputy Consultant Paediatrician 020 3315 8657 Jose Cavalcante, Macmillan CNS

020 3315 2815 or Bleep 5855

Annemarie Rankin, Clinical Psychologist

020 3315 8972

Neptune ward

020 3315 8866 020 3315 8865 020 3315 8864

Jupiter ward

020 3315 8678 020 3315 8675

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Support Organisations There are a number of national organisations that can provide help, advice and information to parents. Some of these are listed below:

Macmillan Cancer Support www.macmillan.org.uk

T: 0808 808 0000

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CLIC Sargent Cancer Care For Children www.clicsargent.org.uk T: 0845 3010031 Support for young people with cancer and their families. Counselling and advice from Sargent Social Workers, respite care, family breaks, adventure holidays and financial help. Leukaemia Research Fund www.leukaemia.org Leading UK research charity devoted to research into the causes, treatment and prevention of leukaemia and other related diseases. Children’s Cancer and Leukaemia Group www.childcancer.org.uk Resources to help families affected by cancer in children including young children and teenagers. website that provides information for patients and families with all types of cancer including support groups in their area

Christian Lewis Children’s Cancer Care www.christianlewistrust.org.uk Tel: 01792 480500 Aims to improve the quality of life for children and provide support to their families. They provide information about a national network of approved complementary therapies. Neuroblastoma Society www.nsoc..co.uk Tel: 020 8940 4353 Charity which aims to fund research into illness and support families of children who have been affected by the disease.

Brain Tumour Trust Tel: 0845 130 9733 www.braintumourtrust.co.uk leading charity dedicated to adults and childhood brain tumours research in the UK.

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The Childhood Eye Cancer Trust www.chect.org.uk

Tel: 020 7377 5578

Charity for families and individuals affected by retinoblastoma. We offer support and information, fund research and raise public awareness of this rare cancer.

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Teenage Cancer Trust www.teenagecancertrust.org Tel: 020 7612 0370 An organisation championing the needs of teenagers with cancer.

TiC (Teen info on Cancer) www.click4tic.org.uk Cancer information and support specifically for teenagers.

Make a Wish www.make-a-wish.org.uk Tel: 01276 405060 Granting the wishes of children with life-threatening illnesses.

Starlight www.starlight.org.uk Tel: 020 7262 2881 Brightens the lives of seriously and terminally ill children by granting their wishes and providing hospital entertainment to help take their minds off the pain, fear and isolation of their illness.

© Chelsea and Westminster Hospital NHS Foundation Trust Updated May 2011

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