Ward 3B Oncology/ Haematology INFORMATION BOOKLET FOR NEW FAMILIES This booklet only gives general information. You must always discuss the individual treatment of your child with the appropriate member of staff. Contents Do not rely on this booklet alone for information about your child’s treatment. 1. WELCOME CONTACT DETAILS 6 MEET OUR TEAm 8 FURTHER SUPPORT 13 TREATMENT PLAN 14 2. GETTING STARTED DAY CARE AND OUTPATIENT CLINICS 17 ShARED CARE 23 SwABS 23 CENTRAL VENOUS LINES 24 BATHING AND ShowERING GUIDELINES 26 3. EXTRA INFORMATION ImmUNISATION AND CHILdhood DISEASES 29 CHICKENPOX AND MEASLES 29 ORAL HYGIENE 31 4. HOSPITAL TO HOME RETURNING HomE 37 MEDICATION 38 LATER EffECTS of TREATMENT 42 5. ADDITIONAL INFORMATION HOLIDAYS 47 BodY PIERCING AND TATTooS 48 PETS 48 SUPPORT GROUPS 49 6. DECLARATION 50 Welcome to our Oncology/ Haematology Ward 3B Ward 3B Oncology/Haematology at Alder Hey comprises of a Clinic and Daycare department, inpatient area for children under 13, and a designated Adolescent unit. Welcome The total capacity consists of 13 inpatient beds and four day case beds, 2 of which are housed on the teenage unit. The unit has the capacity to expand to a maximum of 20 beds. There are two designated Transplant suites where heap filtration allows for bone marrow and stem cell re-infusions. There are also four cubicles allowing for more privacy. Our ward currently cares for over 120 children and young people with cancer per year. Patients are referred from the Merseyside and Cheshire Cancer network (MCCN) and it is the Primary Treatment Centre for North Wales and the Isle of Man. In addition, we receive all referrals for patients with brain tumours from North Staffs Hospital Stoke and additional referrals from Lancashire and from centres outside the North West of England requiring highly specialised services. The ward has a long-standing and very strong commitment to research with an excellent record of participation in national and international clinical trials. Our Philosophy Alder Hey’s Oncology/Haematology Ward is a Principal Treatment Centre for children and young people with cancer and within the Regional Cancer Clinical Network. Our Oncology/Haematology team work together to ensure they provide family centred care that is based on available evidence and research. We will abide by local, regional and national guidelines to continually develop professional practices of the highest quality. We realise that this is a worrying and confusing time for you and your family. This Information Booklet should help to provide much needed information about treatment and care in the Principal Treatment Centre (Alder Hey Children’s NHS Foundation Trust), Shared Care Centre and at home. In the beginning patients will undergo a number of tests before starting treatment as soon as possible. Our staff will always explain exactly what is going on and will be completely honest with patients and their families. If you have any questions, worries or concerns please speak to a member of staff on the ward. Alder Hey Children’s NHS Foundation Trust 5 Ward 3B Oncology/Haematology Principal Treatment Centre Details Member of Team Name Contact Details Alder Hey Children’s NHS Foundation Trust Physiotherapist Occupational Therapist Oncology/Haematology Ward 3B Contact Numbers Youth Support Worker Inpatients/TCT: 0151 252 5212 Day Care 0151 293 3684 Clinic Reception 0151 252 5804 Clinical Trials Office 0151 252 5971 Consultant Oncologist/ Name: Haematologist Consultant Secretary and Name: Contact Number: contact details Jeanette White - Oncology/Haematology Unit Manager Telephone: 0151 252 5470 Email: [email protected] Key Worker Name: Contact Number: Janet Smith - Oncology/Haematology Ward Manager Telephone: 0151 252 5603 Other Members of Multidisciplinary team and contact details Email: [email protected] Member of Team Name Contact Details CYPOON You may wish to complete this once you know who your team is. (Outreach Nurse) CLIC Sargent Social Worker Dietitian Play Specialist Advanced Nurse 0151 252 5799 Practitioner Research Nurses 0151 282 4646 0151 282 4670 Social Worker (other) Alder Hey Children’s NHS Foundation Trust 6 Ward 3B Oncology/Haematology Alder Hey Children’s NHS Foundation Trust 7 Ward 3B Oncology/Haematology ANP’s undertake patient examinations and general health checks, order Meet Our Team investigations, make a plan of care and also try to answer any questions about tests, treatment or general health. Medical Staff They also arrange any further appointments or investigations and prescribe any All our patients are under the care of a Consultant Paediatric Oncologist or a medication that is required. Our ANP’s work Monday to Friday and are available to Consultant Paediatric Haematologist who specialise in the treatment of solid cancers answer queries from patients, families, local hospitals or community staff. or leukaemia. They follow patients right the way through treatment to ensure that care is consistent Their medical team also comprises of junior doctors who rotate regularly as part of and tailored to individual needs. Their role helps to ensure that care is of the their training. highest possible standard and that our patients and families are kept well informed throughout treatment. Nursing Staff Children and Young Person’s Oncology Outreach Nurse Our nursing team is made up of registered nurses, who are specialised in children’s nursing and oncology/haematology. We also have a number of student nurses who Specialists are at various stages of their training. The Children and Young Person’s Oncology Outreach Nurse Specialists (CYPOONS) are a team of nurses with specialist knowledge and experience in children and young The nurses have several different shifts, all overlapping, ensuring the Ward is always person’s cancer. covered. Each shift begins with a handover period. This is when the nurses get together to discuss the changes and care of all the patients on the Ward. Every Their aim is to provide care following diagnosis through the child’s illness journey for patient is allocated a nurse for each shift. children with cancer and their families. There are two CYPOONS teams. The core catchment of the CYPOONS team based at Alder Hey is Merseyside and Cheshire including the Isle of Man. The CLIC (Cancer and Leukaemia in Childhood) Nurses Key Workers provide the service to children from North Wales. All patients are allocated a key worker at an initial multidisciplinary meeting where staffs come together to agree diagnosis and a treatment plan. The key worker is a Children being treated at Alder Hey and living outside these areas are supported by senior nurse or other healthcare professional nominated by a lead clinician in the the CYPOONS team based at Alder Hey working in partnership with local services. multidisciplinary team. Every child or young person is allocated a named CYPOON on diagnosis who works closely with the child and family through their illness journey to provide specialist This professional will introduce themselves to their patient and will provide their care, advice and support. contact details. They stay in regular contact with their patients throughout treatment and arrange additional support nearer to home if needed. Sometimes during Children being treated at Alder Hey and living outside these areas are supported by treatment a different key worker is allocated on request or when special skills are the CYPOONS team based at Alder Hey working in partnership with local services. needed. Every child or young person is allocated a named CYPOON on diagnosis who works closely with the child and family through their illness journey to provide specialist Advanced Nurse Practitioners care, advice and support. Advanced Nurse Practitioners (ANPs) have undertaken additional masters level training which includes clinical assessment skills and prescribing. They work in all areas of the Ward - Inpatients, Day Care and some clinics. Patients who come to Alder Hey for chemotherapy or attend Day Care will see an ANP. Alder Hey Children’s NHS Foundation Trust 8 Ward 3B Oncology/Haematology Alder Hey Children’s NHS Foundation Trust 9 Ward 3B Oncology/Haematology CYPOONs contact details They are there from diagnosis onwards and aim to help the whole family deal with Alder Hey: 0151 252 5408 the impact of cancer. CLIC Sargent Social Worker’s tailor their support to suit the Monday to Friday 9am – 5pm (answer phone out of normal office hours) individual needs of families including: North Wales: • Provide emotional and listening support. Families will be given appropriate contact details by their CLIC Nurse • Help you understand and find ways to deal with practical issues. • They give financial support including grants and help you access benefits support and advice. • They provide a wide range of valuable information on childhood cancer Dietitians • They help children, young people and their families access short breaks or Our dietitians are available to provide expert advice and information relating to diet holidays provided by CLIC Sargent and other partner organisations. and growth. Chemotherapy can alter sense of taste and appetite so the dietitians can • They help children and young people keep up with school, college, university, recommend the best choice of food or alternative nutrition. training or work, so they have the same chance as everyone else. • They support parents and young people to liaise with schools, colleges and employers to ensure they are supported in the best possible way CLIC Sargent Please ask your nurse to contact the dietitian if you have any questions or worries. Social workers do not meet with families until a definite diagnosis has been made. Our Chefs Teenage Cancer Trust Youth Support Co-ordinator We have our own kitchen and employ two chefs to support the patient experience in Our Youth Support Co-ordinator works with patients who are aged 13+years at our Ward. diagnosis or whilst on treatment - and then up to 2 years off treatment to provide activities and one-to-one support on the ward as well as facilitating our peer support Our chefs: group once a month outside the hospital.