FAMILY HELD RECORD - London Cancer · The Family Held Record is also a way to ... however the basic principles should ... febrile neutropenia advice- Supportive Care Protocol, Paediatric

FAMILY HELD

RECORD

Paediatric & Adolescent

Cancer

A collaborative publication from Great Ormond Street Hospital for Children NHS Trust The Royal Marsden NHS Foundation Trust University College London Hospitals NHS Foundation Trust

Family Held Records Version 4.1 (June 2014) First published by Great Ormond Street Hospital, 2001 (v. 1)

Family Held Records Version 4.1 (June 2014). First published 2001 (Version 1). 1

Information Checklist This is a checklist of the information and education that you will receive before being discharged home. A nurse or doctor will go through this information with you.

Patient’s Name:

Ticked() Date & sign

Treatment plan explained

Treatment side effects discussed

Management of febrile neutropenia

Blood counts

What to do in an emergency

Chickenpox and measles

Care of the central venous catheter

Going back to nursery, school, college

Explanation of family held record

The above information has been provided and explained Signature of parent or guardian

BOOKLETS AND LEAFLETS

Ticked () Date & sign

CCLG / Cancer BACUP booklet

Relevant drug information sheets

Relevant disease related fact sheets

Protocol Flow Diagram


Where to find what

Inside front cover Family Information Child/Family details / Keyworker information Contact sheet – Principle Treatment Centre (PTC) Contact sheet – Paediatric Oncology Shared Care Unit

(POSCU) Primary health care team, GP and CCN information

Pink Introduction Family held shared care records What is shared care? Shared care at Principle Treatment Centres (PTC) What will be different?

Green Clinical details and blood counts Relevant protocol flow sheet to be inserted here Effects of treatment on blood cells in bone marrow Blood count record Central venous device information and safety issues Blood products and reactions Chicken pox and measles Radiotherapy record

Yellow Communication Sheets

Record of care performed by patient/parents Communication sheets Personal diary

Clear Information for Families Cancer treatment, chemotherapy and radiotherapy What to do if your child is unwell/ management of febrile

neutropenia Infections Immunisations Treatment related side effects Life at home Coping as a family – who can help? Fasting instructions for general anaesthetic and sedation Sources of information and support – internet help Holiday insurance Useful words and abbreviations

If you have any questions about family held shared care records please call the Shared Care Team on 020 7405 9200 ext. 8526


Child / Family Details

Child’s Name:

Date of Birth:

P.T.C. Hospital No:

P.O.S.C.U. Hospital No:

Home Address:

Telephone No:

Parent(s) / Carer(s) Name(s)

Keyworker

The key worker is defined by the National Institute for Health and Clinical Excellence (NICE 2005) guidance as:

“A person who with the patient’s consent and agreement takes a key role in co-ordinating the patients care and promoting continuity, ensuring the patient knows who to access for information and advice.”

This professional will be a point of contact should you have questions about any aspect of your child’s treatment and will work closely with the teams involved.

It may be appropriate for your disease specific Clinical Nurse Specialist (CNS)/ Advanced Nurse Practitioner (ANP) or Paediatric Oncology Outreach Nurse (POONS) to be your child’s Keyworker

It is intended that at any one time a patient should only have one named key worker in each centre

A Keyworker may change if appropriate throughout the course of treatment

Your Keyworker is:

PTC: Rochelle Lowe Tina Say Lisa Shipway Abi Smith Sue Snaith

Contact no: 020 7405 9200 ext. 0045 Bleep: 0064

POSCU: Contact no:


Contact Sheet – Great Ormond Street

Hospital (PTC)

Child’s Name:

Hospital Record no:

Great Ormond Street Hospital for Children NHS Trust Great Ormond Street London WC1N 3JH Tel: 020 7405 9200

Consultant:

Tel:

Registrar Bleep no:

Fax:

Ward Named Nurse:

Elephant Ward Tel: 020 7829 8821 Lion Ward Tel: 020 7829 8810 Fax: 020 7813 8265

Day Care:

Safari Day Care Tel: 020 7405 9200 ext. 0046 Direct Line: 020 7829 8833 Fax: 020 7813 8254

Blood result fax number

020 7813 8254

Paediatric Oncology Outreach Nurse Specialist (POONS):

Direct Line: 020 7829 8678 Mon - Fri, 8:00 am - 6:00 pm (or message page via hospital switchboard)

Key Worker : Rochelle Lowe / Tina Say / Lisa Shipway / Abi Smith / Sue Snaith (Further information on Page 3)

Contact No: 020 7405 9200 ext. 0045 bleep 0064

Social Worker / CLIC Sargeant Social worker: Maria Pope

Tel: 020 7405 9200 ext. 5320

To enquire about bed availability for your child’s next admission:

Please call Inpatient Reception Desk 0207 405 9200 ext. 1040. If no answer, then call Lion ward nurses’ desk on 020 7829 8810 or Elephant ward nurses’ desk 020 7829 8821.

AT GOSH FOR 24HOUR

TELEPHONE ADVICE PLEASE CALL

During working hours 9-5 please contact your keyworker. Evenings, weekends and bank holidays please contact Lion or Elephant wards Tel: 020 7829 8821 / 8810.


Contact Sheet – Paediatric Oncology

Shared Care Unit (POSCU)

Your POSCU is the local hospital where you will receive aspects of your treatment and supportive care

P.O.S.C.U Hospital:

Consultant:

Registrar Bleep No:

Address: Telephone: Fax:

Ward:

Telephone:

Fax:

Daycare:

Telephone: Fax:

Shared Care Named nurse:

Telephone: Bleep: Fax:

Social Worker:

Telephone:

Others:


Contact Sheet - Primary Health Care Team

Paediatric Community Nursing Team:

Address:

Telephone: Fax:

Service provided by your children’s community nursing team:

Hours of service:

General Practitioner:

Address:

Telephone: Fax:

Health Visitor:

Telephone:

School Nurse:

Telephone:

Others:


Introduction

Family Held Records This folder is for you to keep and provides you with information throughout your son/daughter’s care. The Family Held Record is also a way to assist health care professionals to communicate with one another about your child’s specific treatment. We ask that when you come to your PTC or go to your POSCU, you take your record with you, and ask the nurse and/or the doctor to write in it. All treatment and blood results can be recorded in this book. If you have any questions about the family held record please ask a member of the team. What is Shared Care? The term ‘shared care’ is used to describe the joint delivery of care, not necessarily in the same place or at the same time, by members of the primary care team - such as GPs and Practice Nurses - and of a specialist team - such as a Consultant Oncologist and specialist nursing team. Shared Care at a Principle Treatment Centre (PTC) Great Ormond Street Hospital for Children NHS Trust (GOSH) and University College Hospital London Foundation Trust (UCLH) operate as a unified cancer centre, known as the Principle Treatment Centre (PTC) working as part of the North London Network. The Royal Marsden Hospital with St George’s Hospital operates as a PTC for the South.

The PTC works in collaboration with a network of local shared care hospitals called Paediatric Oncology Shared Care Units (POSCUs) so that appropriate elements of treatment and supportive care can be given closer to the patient’s home. As a PTC we will aim to provide:

Accurate diagnosis relying on sophisticated imaging, blood tests and examination of biopsy samples and bone marrow samples.

Allocation of an appropriate treatment protocol/plan selected by a children’s specialist.

Provision of information to you and your family and the local hospital (POSCU).

Administration of complex intravenous chemotherapy drugs.


It is our policy to share care with your local paediatrician and your local hospital (POSCU). In reality this means that some or most of your child’s care will be performed at a local level. The advantages of shared care are:

A way of ensuring that your child is admitted to hospital under a familiar team of doctors and nurses.

That you and your child will not have to travel as far to your local hospital (POSCU) as you may do to the PTC, which can have advantages in the event of acute infection.

Your local hospital can check blood counts, blood cultures and give intravenous antibiotics and blood products, supervise oral chemotherapy and give some intravenous chemotherapy and co-ordinate the provision of other local services, which you may require. What will be different? We share care with many centres, and every centre may do procedures differently, this is not to say that they are wrong. Local practice and policy can and does differ whilst we work closely with POSCU’s to let them know about our policies, they do not have to follow these precisely. For example the accessing of your child’s central venous device, whether it is a portacath or a central venous catheter may differ between hospitals; however the basic principles should be standard in all hospitals in the UK. There will be some differences between the PTC and your POSCU with regard to general facilities and in particular accommodation for you and your child. We are committed to ensuring that shared care works and is a positive experience for you and your family. However if at any time you encounter any difficulties please tell your consultant or senior nurse so they can talk them through with you.

Family Held Records Version 4.1 (June 2014). First published 2001 (Version 1) 9

Effects of chemotherapy and radiotherapy on blood cells in the bone marrow

The drugs and radiotherapy given for treatment have the inevitable effect of depressing the normal blood cells and bone marrow. The effects of this are shown in the table below:

Normal level Low level Symptoms of low level Treatment for low level

Red blood cell count (Hb )

Varies with age, but around 110 - 130

70 or lower except during radiotherapy

Tiredness + lack of energy

Pallor

Breathlessness

Feeling cold

Dizziness/headaches

Poor feeding/lack of appetite

Blood transfusion

White blood cell count (WBC)

5 - 10 Increased risk of infection

Neutrophil count (N)

1.5 - 6 0.5 or lower = neutropenia Increased risk of bacterial infections

When your child is neutropenic, they will need antibiotics if they have a raised temperature. (see pages 24-25)

Platelet count 150 - 400 < 10 except brain tumour patients < 30 & before lumbar puncture (LP) < 50

Bruise more easily

Bleeding gums or nose bleeds

Small bleeds under the skin (petechiae)

Platelet transfusion. NB In all brain tumour protocols, a platelet transfusion is given if the count is less than 30 or there is evidence of active bleeding.

During the course of your child’s treatment they will have many blood tests. The results of these tests will often be telephoned to you, we would encourage you to use pages in this book to record your child’s blood test results. If you are unsure of what the result means please ask.

New page insert June 2014 to update changes in febrile neutropenia advice- Supportive Care Protocol, Paediatric Haematology & Oncology version 5.1 (updated 09/05/14) and Supportive Care Protocol 4th edition, version 1.0 (01/07/14).


CENTRAL VENOUS ACCESS DEVICE (CVAD)

There are several types of long term access devices which are commonly used; they are a central venous catheter (CVC) or an implantable port. Your child’s treatment plan (protocol) will determine the type of CVAD.

Why do we use CVAD’s?

Your child requires a central venous access device to help us give him/her their treatment in the safest, least painful and most convenient way.

We can use it to give your child their chemotherapy as well as any other necessary drugs, fluids or blood products.

The CVAD can also be used for the majority of routine blood samples that your child will need during their treatment. However it may be necessary in some circumstances to take blood samples from your child’s finger (for example for antibiotic levels) or from a vein in their hand or arm. This would be for specific tests and the reasons will be explained if this becomes necessary.

CVAD Care Bundle

CVAD’s are used for many reasons. But sometimes they cause infections when bacteria grow in the line and spread to the bloodstream, this is called a line infection. A care bundle is a structured way which may help prevent line infections. All health professionals should use this care bundle.

Hand Hygiene Everyone who touches a central venous access device (CVAD) must wash their hands with soap and water or an alcohol cleanser

Daily checks for CVAD’s

Central Venous Catheter Check exit site is dry, not red or inflamed Check line looped under dressing Check clamp(s) clamped Check bung(s) secure

Implantable Port Check over port site for redness, swelling, discomfort When accessed, check as per Hickman line

Dressing CVC should have an intact, dry, adherent transparent dressing present and changed at least every seven days.

Implantable Ports should have an intact, dry adherent transparent dressing present whilst accessed, and changed at least every seven days with needle changes.

CVAD Access Use aseptic non-touch technique. Firmly wipe CVAD hub/bung using friction with 2% chlorhexidine gluconate in 70% isopropyl alcohol for 30 seconds and allow to dry prior to access.


Families can also help by reminding doctors and nurses to use these four steps. If you have any concerns about the care of your child’s line then please contact your POSCU and PTC teams.

Extravasation

Some medicines we give can cause tissue damage if they leak outside of the vein into the surrounding tissues. This is called extravasation.

Prior to giving any medicine that could cause this; the nurses will always make sure the catheter bleeds back.

If you notice any of the following then you must tell a nurse as soon as possible:

o the line is pulled accidentally

o leaking on the dressing

o CVC or port needle is not secured by a dressing

o the loop has come out from under the dressing

CVC and Implantable Port Pack

This pack contains everything you will need in the event of a line related problem. You should always carry this with you.


Central Venous Catheter (CVC) Device

Child’s Name:

Hospital Numbers: P.T.C.:

P.O.S.C.U:

Device information

Type of venous access

Size

Port needle size

Date of insertion

Manufacturer

Dressing

IV3000 Mepore and steristrips

Other (please specify)

Venous access device problems and Investigations (chest x-ray, dye studies/lineogram, echo)

Date Problem

Any queries contact the Intravenous Therapy Team on 020 7405 9200 extension 0049


Blood Products and Reactions

Child’s Name:

Hospital Numbers: P.T.C:

P.O.S.C.U.:

Allergies / Reactions to Drugs (Chemotherapy and antibiotics)

Blood products

You may be given further individual advice for bone marrow transplant (BMT) and peripheral blood stem cell transplant (PBSCT) patients.

CMV STATUS Date

CMV NEGATIVE BLOOD PRODUCTS

YES NO Date

IRRADIATED BLOOD PRODUCTS

YES NO Date

Card given to family

YES NO Date

Other information

Reactions to blood products

Blood product Date of reaction

Pre-medication required


Chickenpox

At the start of your child’s treatment they should have a blood test carried out to see if they have antibodies to chickenpox. The results of the blood test will then be recorded below.

Antibody Status to Chickenpox:

Date:

If your child has been exposed to or has chicken pox, measles or shingles, do not bring them to the ward or clinic without telephoning first. Also, if your child has had VZIG please inform us before coming to the hospital or clinic.

Isolation period for chickenpox

All children who have had a chickenpox contact and have negative antibodies need to be isolated from the 8th day after the chickenpox contact when visiting clinic or an in-patient on the wards.

If your child has had VZIG, they will need to be isolated up to 28 days from the day of contact.

If your child has NOT had ZIG, they will need to be isolated up to 21 days from the day of contact.

Measles

If your child has had a measles contact, please talk to your POSCU or PTC for advice as soon as possible regardless of antibody status. Measles is infectious up to 5 days before the rash appears and 4 days after the rash has disappeared.

Date of contact Date ZIG/HIG given Period of isolation


Radiotherapy Treatment

Child’s Name:

PTC Hospital Number:

POSCU Hospital Number:

Complications / Reactions during Radiotherapy:

Planning date:

Start of Radiotherapy:

Completion date:

Site of Radiotherapy:

Dose of Radiotherapy:

Chemotherapy given during Radiotherapy:

Blood Products during Radiotherapy:

Additional Communication:


Care performed by patient/families

This is a record of all the care that the patient and/or parents are able to perform and willing to undertake without supervision. For example change of dressing passing naso gastric tube, testing and feeding.

Before you leave, hospital staff will work through the techniques that are appropriate to your child and family. We will only involve families in these aspects of care if they feel able and willing to do so, and after we have taught you. However, there are some, such as taking a temperature that are crucial for your child’s safe discharge, and we will teach all families how to do this accurately.

Name: P.T.C. no. P.O.S.C.U. no

Skill/Technique/Procedure (e.g. Taking temperature, understanding febrile neutropenia, performing mouthcare)

Parent’s initials

Assessing nurse initials

Date Written Info Given Y/N


Communication Sheet

The following pages can be used by professionals, to document information and communicate with each other. We suggest that if in clinic your child’s Nurse or Doctor is suggesting a change to the regular blood tests that need to be taken, please could you ask them to write this down on these pages, so you can then show to your community nurse.

Date Comments/Messages Signed


Date Comments/Messages Signed


Personal diary / notes

Some parents have found keeping a diary throughout their child’s treatment has been useful. Particularly for those whose children may remember some aspects of their treatment and have questions to ask at some time in the future. We have provided a few pages here for you to do this if you wish.

Date


Date


Cancer treatment

We have provided some information about treatment and an overview of some of the side effects that your child is likely to experience. Your Keyworker will also talk this through with you and will be able to give you additional information/booklets to help build your understanding. Chemotherapy: what is it? Chemotherapy is the use of anti cancer (cytotoxic) drugs to destroy cancer cells; they can reach the cancer cells all over the body. These drugs do not distinguish between cancer cells and normal cells, as a result they affect other dividing cells such as the bone marrow (which makes blood cells), lining of the mouth, hair follicles, and the digestive system (lining of the stomach). This is why it is not uncommon for patients to have a sore mouth, upset stomach and hair loss. The side effects caused by destroying some of these normal cells are almost always temporary. Chemotherapy Treatment Plan

Chemotherapy may be given by different routes. Most commonly chemotherapy drugs are given by mouth or via a ‘drip’ (central venous access device/cannula). Some patients will also have chemotherapy given into their spinal fluid via a lumbar puncture.

Chemotherapy may sometimes be given as a series of sessions of treatment known as a cycle of chemotherapy or it may be given continually. This depends on your child’s individual treatment plan (protocol).

The medical and nursing team will discuss your child’s treatment plan with you.

Individual chemotherapy drugs have specific side effects. The medical and nursing team will tell you about the side effects that your child may experience during their treatment and what you can do to help manage these.


Chemotherapy: Side effects Normal cells most affected by chemotherapy include those in the Bone marrow where blood cells are produced. There are several types of blood cells affected: Red blood cells contain an iron rich protein called haemoglobin. The haemoglobin (Hb) picks up oxygen from the lungs and carries it to all organs of the body. If your haemoglobin level is low, your child is anaemic and they may feel more tired and look pale. If the Hb drops below a certain level your child will need a blood transfusion. The level at which a transfusion is given is determined by your child’s diagnosis and their clinical condition. White blood cells are necessary to fight infections. When the white blood cell count is low your child may be more likely to get sick from infections (bacterial and viral). There are different types of white blood cells; each one has a different role in fighting infections. In children receiving chemotherapy we are most concerned with a white blood cell called a neutrophil, as neutrophils are very important in fighting bacterial infections. Children with a low neutrophil count are said to be neutropenic. Platelets are necessary for blood to clot. When your child’s platelet count is low they may be at more risk of bleeding/bruising. This is called thrombocytopenia. If the platelet count drops below a certain level they will require a platelet transfusion. The level at which a transfusion is given is determined by your child’s diagnosis and their clinical condition. Normal blood values and when will transfusion be necessary? – See yellow section. Further information on blood transfusions will be available from the wards or can be downloaded from www.blood.co.uk Digestive system – the cells lining the mouth and gut (stomach, bowel/ intestine, rectum) can be affected causing symptoms of vomiting, diarrhoea and a sore mouth. Hair follicles – this results in hair loss for most patients (alopecia). This is temporary and hair will grow back, once treatment is completed. For some children hair loss happens gradually while for others this can happen quite quickly. This can relate to the type of chemotherapy drugs your child is having. These and other side effects and how they can be managed are discussed in further detail on Page 31. Further information on side effects of specific drugs is available from our Drug Information Sheets available on all the wards and on our website:

www.gosh.nhs.uk

http://www.gosh.nhs.uk/


Radiotherapy: what is it?

Radiotherapy or radiation therapy is the use of high-energy rays, usually X-rays, to kill cancer cells. The actual treatment is painless and may only take a few minutes, however, your child will need support and guidance in preparing him or herself for the therapy. Radiotherapy is a localised treatment, which means it only kills cancer cells in the area of the body at which it is directed. Cancer cells are more sensitive to radiotherapy than normal cells and those normal cells, which may be affected, recover quickly. If your child is to receive radiotherapy, the doctors, nurses, radiotherapists and radiographers will give you further information. Radiotherapy treatment for Great Ormond Street Hospital patients is primarily undertaken at: University College London Hospitals NHS Foundation Trust (UCLH) 235 Euston Road, London NW1 2BU

Tel: 0845 155 5000 Specific treatment related information will be provided for you and your child when radiotherapy is being planned and you will meet a number of professionals who specialise in radiotherapy and can help you and your child through that aspect of their treatment. Radiotherapy Reception: 0845 155 5000 ext. 73700 Radiotherapy Play Specialist 0845 155 5000 ext. 73792


What to do if your child is unwell during

treatment

What is Febrile Neutropenia? Some chemotherapy drugs can reduce the production of white blood cells by the bone marrow. This lowers your child’s immunity and makes them more prone to infection. This is often referred to as neutropenia. The risk of infection varies depending on the type of treatment your child is having, how low the blood counts are and the length of time they are low. If children develop a temperature whilst they are neutropenic this is referred to as febrile neutropenia. Your child will be neutropenic if neutrophils are 0.5 or below. What should you do if your child is unwell? The most important part of caring for a child with a low neutrophil count (neutrophils 0.5 or below = neutropenic) is to seek advice immediately if they become unwell or develop a fever. It is therefore important to have a suitable thermometer available at home, so if your child seems unwell and/ or feels hot you can check their temperature. Mercury thermometers are no longer recommended for use with children. We advise that when your child is neutropenic and develops a temperature at home, they should NOT be given paracetamol (Calpol®) until he/she is reviewed at the POSCU. Once your child has been reviewed at the POSCU and it is clear what action is needed, it will be fine to give your child paracetamol. We do not advise giving nurofen/Ibuprofen to your child whilst they are receiving chemotherapy/ radiotherapy, unless discussed and agreed with your consultant at the PTC.



You should seek further advice: • If your child is neutropenic (neutrophils are = 0.5 or below) or you are not sure

what their neutrophils are and his/her temperature is 38ºC or above, telephone your POSCU and take your child there immediately.

• If your child is neutropenic or you are not sure what their neutrophils are and

seems generally unwell, with symptoms for example of diarrhoea or vomiting, telephone your POSCU or community nurse immediately, as he/she will need medical review.

Be aware: • Sometimes children can be unwell without having a high temperature, it could be

low (less than 35ºC), your child may be drowsy or more lethargic than usual or have abdominal pain, or you may just have the sense of ‘not being right’. If this happens, call your POSCU as your child will need medical review.

Steroids can mask a temperature, if your child is taking steroids and seems generally unwell with or without a temperature please telephone your POSCU or community nurse for advice.

Treatment of febrile neutropenia

Once your child has been admitted to hospital, he or she will be examined, and have some blood tests taken including blood cultures. In accordance with the POSCU’s supportive care protocol, which has been written by the PTC’s, a course of intravenous antibiotics will be started. The length of stay in your local hospital can vary, depending on the type of infection. It is fairly common that during the episode of neutropenia the source of infection may not be found. However, the antibiotics that we use treat the most common bugs that can cause infection. The doctors will be able to tell you what tests they have done and the results.



NOTE: THE INFORMATION BELOW MAY NOT APPLY IF YOUR CHILD RECEIVES A STEM CELL TREATMENT OR A BONE MARROW TRANSPLANT.

Infections

The treatment used to treat cancer reduces the immune systems ability to fight infection. Therefore your child will be at increased risk of developing infection, particularly if they are neutropenic as previously mentioned. This section discusses some of the infections we are most concerned with. Bacterial Infections Bacteria can cause serious infections in children who are immunocompromised (at greater risk of infection). Some bacteria that normally live in or on our bodies and would normally not do us any harm can cause severe infection in children receiving treatment for cancer, particularly if they are neutropenic or have a central line (CVC). Bacterial infections will be treated with antibiotics often given intravenously, see Pages 24/25 for treatment of febrile neutropenia. Opportunistic Infections There are germs around us that do not cause infections in healthy children, but can be harmful to children who are immunocompromised. These infections known as opportunistic infections include, fungal infections such as thrush, and pneumocysitis pneumonia. Pneumocystis Jiroveci Pneumonia (formerly known as PCP) This infection is due to an organism (bug) that is probably present in most people’s lungs. Children who are receiving long term drugs which interfere with the body’s ability to cope with infections may be more at risk from this type of pneumonia. The symptoms of this infection include a raised temperature, rapid breathing and a dry cough. You may hear the doctors and nurses referring to this as ‘PCP’ as it was previously called Pneumocystis Carinii pneumonia. To help reduce the risk of children developing Pneumocystis Jiroveci Pneumonia some protocols advise that whilst receiving chemotherapy we give children an antibiotic called co-trimoxazole (Septrin). Co-trimoxazole is usually taken twice a day for two consecutive days each week and it is important that if prescribed your child does take it regularly (unless your doctor / nurse advise you to stop taking for a short time). Some children may either be allergic or not tolerate the co-trimoxazole, if this occurs we will use an alternative drug. Viral Infections Most of the common viral infections are not prolonged or serious in children on chemotherapy and you do not need to worry about them. The following are the exceptions:


Measles Measles can be a very serious infection in children receiving chemotherapy treatment or within six months of completing treatment. Children on chemotherapy can catch measles even if they have been previously immunised. A significant contact with measles is defined as direct contact for more than 15 minutes with an individual who has confirmed measles during the infectious period (which is for five days prior to rash developing - four days after the rash develops). If your child has a direct contact with someone with measles then you need to do the following:

Contact your POSCU or PTC as soon as possible for advice.

Your child will need to receive an injection of immune globulin. This is called HIG (human immune globulin), and it needs to be given as an injection into the muscle within 48 hours of contact with measles if possible, but it can be given after this period if necessary.

You can help lower the risk to your child by getting your other children immunised (if they have not already been so) and by encouraging school friends to do the same. There is no risk to your child of transmission of the virus from other children who have recently been immunised. Chicken pox and Shingles Chicken pox and shingles are caused by the varicella zoster virus (VZV), and is a contagious disease. Chicken pox is infectious 48 hours before the first spot appears. The rash generally breaks out 10-21 days after exposure and remains contagious until all lesions have scabbed over. Symptoms of chicken pox include: Flu like symptoms, such as fever, runny nose, watery eyes and tiredness. Appearance of an itchy rash, characterised by small red spots, raised red areas or fluid filled blisters like sores that break out and scab. The rash usually starts in the stomach, chest, back or scalp and new spots will develop for up to 3-5 days or sometimes longer. Shingles is a reactivation of the varicella-zoster virus, the same virus that causes chicken pox. Shingles results in clusters of burning, itching blisters, typically on one side of the chest or back but may affect the face and more rarely the eye. Chicken pox is caught from direct contact with the person affected with either chicken pox or shingles. Direct contact is defined as being in contact with an affected person for 15 minutes or longer, touching a person is considered direct contact. Someone who does not have chickenpox or shingles cannot pass it on.


Treatment is available both to reduce the risk of catching chicken pox, and to treat the infection if it arises. Children on treatment or within 6 months of completion of treatment who develop chickenpox or shingles should receive prompt treatment with Aciclovir; this is usually given intravenously at first. Before starting chemotherapy your child should have a blood sample taken to see if they have antibodies to chickenpox. This test is carried out at diagnosis and the result will be written on Page 14. If this is not recorded please ask a member of the team at the PTC for the result. If your child has a direct contact with someone with either chicken pox or shingles then you need to do the following:

Contact your POSCU or PTC as soon as possible after every contact for advice.

If your child has antibodies (positive antibodies) to chickenpox then your

child will not require VZIG.

If your child does not have immunity (negative antibodies) to chickenpox then they will require VZIG.

VZIG (Varicella Zoster immune Globulin) Serious infection can be reduced or avoided by an injection of VZIG which should be given as soon as possible, within 72 hours of contact. However it may be given up to 10 days after contact with the infected individual. This needs to be given as an injection into the muscle (usually the leg). Once VZIG has been given the child can return to school. ZIG is only effective for three to four weeks, after which time they will need to have the injection repeated if there is another contact. Your child can attend school following the ZIG injection. ZIG is indicated until 6 months from the end of treatment. Note: If your child has / has been exposed to chicken pox, measles or shingles, do not bring them to the ward or clinic without telephoning us first. Also, if your child has had ZIG, please inform us before coming to hospital. Cold sores A related virus, the herpes simplex virus, causes cold sores and some children get recurrent problems. If they are persistent or troublesome the doctor will usually treat them with Aciclovir given orally. They rarely cause major problems but can be uncomfortable. Please contact your POSCU or PTC for advice.


NOTE: THE INFORMATION BELOW MAY NOT APPLY IF YOUR CHILD RECEIVES A STEM CELL TREATMENT OR A BONE MARROW TRANSPLANT

Immunisations

Chemotherapy can reduce immunity to infections that your child has already been immunised against. From diagnosis until 6 months after finishing treatment, children receiving chemotherapy can only receive:

Influenza Vaccination (Flu vaccine)

Seasonal Influenza vaccine is recommended every year in autumn for all patients over 6 months old receiving chemotherapy.

Flu vaccine is also recommended for all household contacts (6 months or older) during this period.

The only exception to this advice is for those with an egg allergy. Currently, the flu vaccine is developed using eggs, please contact your PTC for advice. Celvapan can be given to children with egg allergies.

The exceptions are: Babies / Children under the age of one year Babies who have not completed their immunisations at 2, 3 and 4 months of age can receive these during chemotherapy if they are well but must receive the killed polio vaccine. Please discuss with your PTC when it is appropriate to start vaccinations as this will differ according to each protocol. MMR MMR vaccine should not be given to any child during chemotherapy or within 6 months of completing chemotherapy. Please discuss with your PTC if there is a measles outbreak in your area. Re-immunisation is necessary after finishing treatment We can’t stress how important it is to have your child revaccinated 6 months following completion of treatment. If you have concerns please discuss with your medical team.


Vaccination booster doses due 6 months after finishing treatment

• Diphtheria • Tetanus • Acellular pertussis • IPV (Inactivated polio vaccine) • Hib (Haemophilus Influenzae type B vaccine) • Meningitis C (Meningococcal group C conjugated vaccine) • MMR (Measles, mumps and rubella) • PCV (pneumococcal conjugate vaccine) Once only, all age groups

Important Notes for professionals

Passive immunisation against measles and chickenpox to continue until 6 months from completion of treatment.

Parents to arrange re-immunisations with their GP.

Subsequent routine booster doses (e.g. pre-school) will not be necessary if they are scheduled to be given within 1 year of re-immunisation.

If patient has previously had BCG and considered to be at high risk of tuberculosis, check tuberculin test and if negative, re-vaccinate. If patient has not previously had BCG, immunise according to local policy.

Travelling Abroad If you are travelling abroad during or soon after chemotherapy, discuss immunisation requirements with your medical team. It is recommended that you obtain travel insurance when travelling aboard, see Page 47. Immunisation of siblings / parents / carers We advise that siblings are fully immunised, particularly against measles. There is no risk of a child with cancer catching measles from a vaccinated sibling. Seasonal Influenza vaccine is also recommended for all household contacts (parents, siblings, close family members - 6 months or older) during this period. Other siblings, parents/carers who have not had chicken pox can be vaccinated against it which could protect the child receiving treatment. You can obtain this vaccination from you GP, if there are any difficulties in obtaining the vaccine please discuss with your PTC.


Treatment related side effects

All treatment causes side effects; those discussed below are not an exhaustive list but are some of the most common. Specific side effects will be discussed in more detail with you by the team at the PTC.

Nausea and vomiting (feeling and being sick) Nausea and vomiting is a side effect of radiotherapy and many chemotherapy drugs. Anti-sickness drugs can be given to reduce these symptoms. If the nausea and sickness is not controlled or persists, please inform your doctor or nurse. It may be that a different combination of anti-sickness drugs may help. Depending on the treatment protocol, on discharge from hospital you will be sent home with one or two days of oral anti-sickness drugs. If your child continues to be sick or has diarrhoea for longer than 24 hours or you are worried about them being able to take fluids contact your local shared care hospital (POSCU). Other ways of helping may be eating small, light meals regularly rather than one big meal. Dry toast, crackers and plain biscuits are especially good for nausea. Try avoiding spicy foods and fatty fried foods as well as those with strong flavours and smells. Sipping fizzy drinks (lemonade, coke, ginger ale) may also help and some patients have had benefit from wearing Sea-bands. Diarrhoea Some of the chemotherapy drugs we use can cause diarrhoea. As a result of the increased loss of fluid, diarrhoea can lead to dehydration, and should therefore be discussed with your doctor. Diarrhoea can also cause abdominal pain and an excoriated (sore) bottom, similar to severe nappy rash. It is advisable to use a good barrier cream to try and prevent this, if not effective seek advice about what else to use from your POSCU. Constipation Constipation is also associated with some chemotherapy drugs, depending on the combination and dose given. Please tell the doctor or nurse if your child seems constipated as they may prescribe a laxative (medicine to help). Your doctor may also give your child a laxative at the same time as starting some drugs, e.g. codeine/ morphine, as they are known to cause constipation. It can help to drink plenty of fluids and to eat more high fibre foods. This includes wholemeal bread or pasta, fruit and vegetables or baked beans.

HINTS

HINTS

HINTS


Pain Your child can have pain as a result of the disease he/she is being treated for, or as a side-effect to treatment. The following are some general principles: in some situations, paracetamol can be used for pain relief. However, if your child’s neutrophil count is 0.5 or below, we do not recommend the use of paracetamol for pain relief at home as this may mask the fever of febrile neutropenia. Ibuprofen can affect the function of platelets and increase the risk of bleeding; we do not recommend the use of ibuprofen for children on chemotherapy treatment. There are also other medications that can be used safely and effectively. If your child has pain please discuss it with your medical team who will be able to advise and prescribe appropriate medicines. Mucositis / sore mouth Chemotherapy and radiotherapy can cause ulcers and pain in your child’s mouth. This can be managed and minimised by good mouth care. When your child starts treatment, one of the nurses will explain how to care for your child’s mouth. Try to keep their mouth clean, moist and free from infection. This is best achieved by brushing with a soft toothbrush and fluoride toothpaste after meals and before bedtime, or at least twice a day. Sometimes a child may not say they are in pain but you might notice a change in how they speak, husky voice or they may seem to have difficulty in chewing, swallowing food and even at times their own saliva. If your child’s mouth becomes sore, please let your doctor or nurse know as there are medicines we can use to help them feel better. Soft, non-spicy foods cut into small pieces will be easier to chew and swallow. Avoid food and drinks with a high acid content such as tomatoes & pure orange juice which will irritate the mouth and may cause increased pain. Please refer to Mouth care Leaflet enclosed at the front of the folder or via www.gosh.nhs.uk. Weight loss Your child’s weight and height will be regularly measured. For some it can be very difficult to eat enough food during treatment. If your child is losing weight or has a poor appetite ask to speak to one of the dieticians. They can suggest food and drinks that may be helpful in maintaining weight. Artificial feeding is often recommended for children who are still losing weight. This is usually given through a thin, plastic tube called a nasogastric (NG) tube. This type of feeding is very common with younger children and during certain types of treatment. CCLG leaflet available “Helping your child to eat” copies should be available from the PTC or can be downloaded from www.cclg.org.uk/


http://www.gosh.nhs.uk/

http://www.cclg.org.uk/


Body image changes Children and young people undergoing treatment for cancer may experience changes in physical appearance as a result of the treatment. This is often the most upsetting side effect of treatment for your child who will need a lot of reassurance and support at this time. Hair loss, weight loss, weight gain and skin changes are all physical changes that may occur at some stage during their treatment. Based on your child’s protocol the medical nursing team can advise you about the possible changes in appearance to expect. Hair loss / Alopecia This affects different children in different ways. The older children are more aware of it and may find it an embarrassing problem, particularly where their friends are concerned. Not all chemotherapy causes complete hair loss. Your Doctor or nurse can advise what is likely to happen for your child based on the treatment they will be receiving. If your child is receiving radiotherapy to their head as part of their treatment this will also cause hair loss. Hair tends to thin and fall out gradually. Long hair may be best cut before it falls out. If you think your child might want to wear a wig it is worth discussing this before their hair falls out to allow time for the wig to be made and to match their own hair colour. Please ask your nurse (POONS) about arranging a wig as there are a number of options available. Otherwise there are many weird and wonderful hats and bandanas available in the shops. Hair will grow back following completion of treatment, although it may not grow back completely in the area where your child had radiotherapy. Skin changes Children often develop rashes or changes in skin pigmentation (colour) as a result of chemotherapy. Rashes can also be a side effect or allergic reaction to certain medications. Reassure your child that skin colour often returns to normal after treatment has stopped. If you suspect your child has developed an unusual rash similar to chicken pox for example, please contact your POSCU promptly.


NOTE: THE INFORMATION BELOW MAY NOT APPLY IF YOUR CHILD RECEIVES A BONE MARROW TRANSPLANT

Life at Home

This section discusses information which you may find useful on a daily basis, if you are worried or concerned about any of the things mentioned here please contact your POSCU or PTC for further advice and support. It is important for your child to try and maintain as normal a family life as possible during treatment; support is available to help you do this.

Diet Getting your child to eat a balanced diet can be difficult even when they are feeling well. However, it is quite normal for your child’s appetite to decrease while having treatment. The drugs can cause foods to taste differently and your child may go off food if their mouth is sore or they are feeling sick. If you are concerned about your child’s diet, please ask to speak to one of the dieticians. Food hygiene advice When your child is ill or having treatment they are more at risk of getting food poisoning. To reduce this risk, all foods should be thoroughly cooked and/or stored correctly. The cooked food should be eaten immediately and leftovers should not be reheated. Salad, vegetables and fruit should be washed and dried before eating. Do not use food that has passed the ‘sell-by’ or ‘best before’ date. Further information is available in the food safety section of NHS Choices www.nhs.uk/livewell/ Foods to avoid While your child is on treatment, he or she should avoid certain high-risk foods. These include raw or lightly cooked eggs, shellfish (like mussels and prawns), soft unpasteurised cheeses, live yogurts and ‘uncooked’ peppercorns and spices. Vitamins / Probiotics We do not advise the use of vitamin and mineral supplements or probiotics during treatment, as they both have the potential to interact with the chemotherapy drugs. Please discuss any additional supplements you may wish to use with your child’s medical team including homeopathic remedies and herbal preparations.

http://www.nhs.uk/livewell/


Oral Syringes (purple in colour) Syringes for oral medication which is not chemotherapy can be disposed of in your dustbin. Syringes which are used for oral chemotherapy should be placed in a carrier bag and disposed of in your dustbin as usual. Medicine syringes can be re-used, and should be washed out with soapy water in between use. Medicines When coming to hospital for an outpatient appointment or for an inpatient stay please bring all your child’s medicines with you. Disposal of nappies and body fluids after a course of chemotherapy Your child will still be excreting chemotherapy in their urine and faeces up to seven days after the chemotherapy has finished. If your child is wearing nappies or needs assistance with toileting, we suggest that you wear gloves (household rubber gloves are ideal) to change the nappy to protect yourself. Place the nappies, wipes or cotton wool, gloves if you are using disposable, in a plastic carrier bag and dispose of in your dustbin as usual. Holidays If you are planning any holidays in the near future, then we advise you to seek advice from the doctors and nurses well before you book anything, especially if you are going abroad. There are some destinations which we would not recommend you travel to while receiving treatment. Your (POONS) outreach nurse, or local team will be able to provide letters if required to help you take medical supplies abroad and arrange a local contact should medical help be required for the child receiving treatment – however they will need at least two weeks notice to arrange this for you. We recommend that you do not travel without appropriate travel insurance which is likely to be more expensive. A list of insurance companies who may undertake to provide appropriate medical travel insurance is on Page 47; in addition useful travel advice is available from www.macmillan.org.uk Transport It is safe for a child receiving treatment for childhood cancer to travel on public transport, even if neutropenic. Although, we recommend if possible not to travel at peak times. There are some situations when a child may require hospital transport, this will be assessed and agreed by the PTC on a case by case basis according to that hospital’s patient transport policy.

http://www.macmillan.org.uk/


Building Work If you are or intend to do any significant building work at home, please discuss with your PTC or POSCU, as your child may be at risk of developing a fungal infection from dust, which can be disturbed during building work. School / Nursery During most cancer treatments your child can undertake his or her usual activities including school attendance even when they are neutropenic. Children receiving intensive chemotherapy are advised to be more cautious about contact with other children when neutropenic. Your doctor or nurse will advise you if this is the case. The two infections you should be concerned about are chicken pox and measles - see Page 27-28. If your child is attending school/ nursery we ask that they inform you immediately if there is an outbreak of either disease in your child’s class, so that you can seek advice as soon as possible. You may also be concerned about how other children will react to your child especially regarding his or her hair loss. We have found that if the other children understand your child’s illness, then the possibility of teasing may be reduced, although there are no guarantees unfortunately. This is not to say that everyone needs to know, but we can liaise with your child’s school and share information with the head teacher or class teacher if appropriate. You should encourage the continuation of your child’s friendships, even when he or she is not at school, to increase their confidence when the time comes to return to school. There are a number of helpful publications for schools and nurseries including: Welcome Back available via www.cancerresearchuk.org

Pupils with cancer – a guide for teachers Returning to school – a teachers guide for pupils with brain tumours both of which are downloadable from www.royalmarsden.nhs.uk When your child is ready to return to school / nursery your CNS, outreach nurse (POON’s) or children’s community nurse can arrange to visit the school. They will discuss any issues and concerns the school may have and help facilitate a smooth transition back to school for your child. You are welcome to be involved in this discussion and visit.

Pets If you have a pet or pets there is no reason why your child needs to stay away from them. As always, hand washing is extremely important after handling animals and particularly before meals. Cats and dogs should be treated regularly for worms, and vaccinated as recommended by your vet. Avoid contact with excreta or litter trays and with mucking out horses as fungus lives in the straw. A leaflet with further information, Children with cancer and pets is downloadable from www.cclg.org.uk/

http://www.cancerresearchuk.org/

http://www.royalmarsden.nhs.uk/



Swimming If your child has had a type of central venous access device (CVAD) inserted for chemotherapy then they should not go swimming. Your child is allowed to go swimming if he or she has a port, unless the port needle is in place. Sun protection While your child is having treatment and after treatment is completed, his or her skin may burn more easily than usual. You should avoid your child being exposed to sunlight and other forms of ultraviolet light. If your child does go out in the sun always use a good sun block of SPF 25 or higher and ensure they wear a sun hat. Long-Term Follow-up After treatment for childhood cancer has been completed your child will be followed up by your PTC and POSCU. Your child will be referred to the Long-Term Follow-up team when he or she is at least 5 years from the end of treatment. While the treatment has been successful for treating your child’s original condition, sometimes treatment might cause problems in the future. The aim of Long-Term Follow-up is to monitor your child regularly so that we can diagnose any new problems and treat them as soon as possible. At your first Long-Term Follow-up appointment you will receive a treatment summary and care plan. You will also have an opportunity to be involved with planning continuing follow-up care. Sometimes we are able share Long-Term Follow-up with your shared care hospital. At the age of 16 to 18 years young people will be invited to attend a Transition appointment in preparation to continue Long-Term Follow-up in adult services. Information about Long-Term Follow-up is available at www.ucl.ac.uk/clinicalservices indexed to Long-Term Follow-up childhood cancer. There is also a patient information leaflet about Long-Term Follow-up available www.cclg.org.uk/ Transition Being a teenager can be a difficult time without the added difficulty of receiving treatment for your illness. That is why specialist Teenage and Young Peoples Units have been developed all over the country. Patients and relatives have identified as highly valuable the support and benefits from being in an environment where they have contact with other teenagers, young people and relatives going through a similar journey. For these reasons young people from the age of 13 years receiving treatment at Great Ormond Street Hospital will have their care or follow-up at University College London Hospital.

http://www.ucl.ac.uk/clinicalservices



This transition process can be likened to the move from primary school to secondary school. It may make the teenager or young person and their family feel excited if they are ready for the change, or worried and scared about leaving especially if they know the doctors, nurses and team at GOSH really well. It may be reassuring to know that GOSH and UCLH work in partnership and the medical and nursing teams attend many meetings together and discuss patient care and treatment together. We aim to ensure that the transition from GOSH to UCLH goes well but if you have any concerns or are finding transition difficult please do not hesitate to discuss these worries with a nurse or your Consultant so we can try to make things better. All teenagers, young people and their families are invited to attend family support days run by the Teenage Cancer Trust in conjunction with UCLH. These days give teenagers, young people and their families an opportunity to meet and share with others of their own age who have experienced similar experiences to themselves. They are open to any teenager and their family who has ever received treatment for cancer. Their treatment may have been years ago, they may be currently on treatment or many find the days especially useful if they have recently completed treatment as it provides additional support at a time of change. If you would like additional information or to be added to the mailing list email [email protected].

Coping as a family

Coping with the diagnosis of cancer, coming into hospital (whether for the first time or for a return visit) and treatment itself can be stressful and create a range of different feelings for you and your child (e.g. worry, confusion). People cope with these feelings in a variety of ways. Hospital staff understands the disruption illness can cause and there are people who are experienced in helping children and families to cope with being in hospital. At your hospital there may be social workers, psychologists, specialist nurses, play specialists, teachers and/or counsellors that can help. Your child Knowing what and how much to tell your child about their illness or treatment is a common concern. It can be useful to discuss such worries. Some parents also notice a change in the way their child behaves, either in hospital or when they get home. This often only lasts for a short time but it can still be very upsetting. Introducing a regular routine and a gradual return to normal activities is important as your child’s health improves.


Brothers and Sisters When your child has been diagnosed with cancer the impact of the news and the treatment affects the whole family. It is important to recognise that this can be a difficult time for brothers and sisters. They are often faced with the absence of one or both parents as well as coping with worries about their ill brother or sister. Brothers and sisters can sometimes feel ignored and rejected. They may feel worried about their brother/sister but are too afraid to ask questions. Sometimes you may notice changes in their behaviour. They may become clingier and have difficulty being away from you. They may have problems concentrating at school. Sometimes siblings can act in a jealous way and become more demanding of your attention. They may become angrier and argue more frequently, this is normal and understandable. How to help brothers and sisters is a leaflet downloadable from www.cclg.org.uk/ with further information. Grandparents/Wider Family Grandparents and other close family members may also experience a lot of stress and anxiety. They often worry about you and how you are coping, as well as worrying about the ill child. Some friends/relatives appreciate being able to assist in practical ways (e.g. looking after other children in the family). Further information and suggestions downloadable from www.cclg.org.uk/ Grandparents – A guide for grandparents of children and young people with cancer.

Who can help?

The experience of families varies enormously. Certain situations like living a long way from the hospital, having English as a second language or being a lone parent, adds to the stress of coping with an ill child. Please ask a member of the team if you, your child or other people in your family would like further support or advice. They will be able to put you in touch with someone who works within psychosocial and family services such as:

CLINICAL PSYCHOLOGIST

The clinical psychologist works closely with the team to support children and families coping with cancer and its treatment, and to find new ways of managing any problems. They also offer advice and support to the team to help them to understand how your child is coping with their illness and treatments so that they can support you during this time




They understand that this can be a very difficult time and that it is natural for you and your child to experience a range of feelings. Living with cancer and having lots of treatment and admissions to hospital is hard work. Sometimes coping with these things can affect how young people think, feel and what they do. They might feel down or worried about things, they might feel like doing fewer of their usual activities or they may find it harder to get on with other people. The psychology team recognise that all families cope with illness in different ways. They can offer help and support at any time throughout treatment, please ask a member of the team to contact the clinical psychology service. Top Tips for Parents

Ask for information to be repeated – you will be told lots of new information and you will meet lots of new people, particularly in the first few weeks. Don’t be afraid to ask if you are unsure about something or can’t remember what you have been told previously.

Help your child to understand – we know that children cope better with their treatment and adjust more easily to new situations when they understand what is happening and why. Talk to your child and help them to understand, there are people to help you to do this.

Help your child to express their feelings and talk about what is worrying them. Your child's behaviour may change – young children in particular often express their feelings through their behaviour. Your child may become withdrawn or angry and aggressive.

Try to keep your family routines – multiple hospital appointments / stays in hospital will change your daily routine. This can be upsetting for all members of the family. Where possible, try to maintain some familiar routines.

Maintain consistency and discipline – parents often say that it is hard to discipline their child when he/she is ill. Your style of discipline and ‘rules’ are important for your child so that things are familiar for them. Don’t forget to give lots of praise and encouragement for times when they have coped well with a difficult procedure.

Don’t forget yourselves!

Give yourself permission to take a break – visiting hours on the ward for parents are unlimited. However, we advise you to take short breaks so that you can help yourself to cope with your child’s illness.

If possible relax – try to find time each day (even if it’s only for a few moments) that is time for you.


CLIC SARGENT SOCIAL WORKER

CLIC Sargent social worker’s have one simple aim: to ease the burden of childhood cancer on children, young people and their families.

Expert help for every child and young person diagnosed with cancer. They help children and young people with cancer and their families with the trauma of diagnosis, the often long journey through treatment, and continue to support them afterwards.

CLIC Sargent recognise that children, young people and their families need specialist support, information and advice from the moment of diagnosis. Social workers are there for all the family members. CLIC Sargent social workers tailor their support to suit the individual needs of children, young people and families. For example, they can:

Provide emotional support to all members of the child or young person’s family.

A CLIC Sargent social worker co-leads a weekly group on the ward called Parent’s Tea.

Help you understand and find ways to deal with the practical issues that crop up.

Advise you about the benefits or grants you may be entitled to, and where else you might be able to apply for financial help.

Help you with the paperwork and applications for these benefits and grants.

Help you deal with people or organisations like your employers or your child’s school.

And they can also introduce you to other families and parents who have children with cancer. Then you can talk about the experience and share useful tips on coping with the effects of cancer on your family.

What happens when a Clic Sargent social worker first gets in touch? Your CLIC Sargent social worker can discuss the impact of your child’s diagnosis with you as a family and support you in dealing with the practical and emotional consequences. They can offer support for the whole family including siblings who may feel confused and detached. Our social workers are experienced in all aspects of social and emotional care.


How do Clic Sargent social workers help families day to day? CLIC Sargent social workers don’t only help you cope with the emotional stresses and strains of caring for your child who is really ill. They can also help families deal with the demands of daily life, work and financial commitments. They have worked with many families in the same position as you, and have a wealth of information on where you can get support and advice. For further information on the role of a CLIC Sargent social worker, go to http://www.clicsargent.org.uk/Whatwedo/Dayinthelife/Jason-SocialWorker.

PLAY SPECIALIST

The play specialist plays a significant part in your child’s stay at the hospital. They work with children to help them understand why they are here at the hospital and use play as a therapeutic tool. By doing this they create a relaxing environment with the child and family and can build a relationship and earn each other’s trust. The play specialist also:

Works as part of the multidisciplinary team.

Provides appropriate support to all family members including siblings.

Help’s your child to gain confidence and a better understanding of their treatment through role play.

Prepares your child for procedures and familiarizes them with medical equipment, visits to theatres, MRI and X-ray.

Provides effective distraction during procedures (blood tests, MRI, etc).

Provides a safe place to play by organising daily play and art activities in the playroom or at a patient’s bedside.

SPIRITUAL AND RELIGIOUS CARE

The hospital has a team of chaplains from a variety of faiths and denominations who are available to offer spiritual care for patients, families and staff. If you would like to see a chaplain, please ask a member of staff and they can arrange this for you. You do not have to be a ‘religious’ person to visit the chapel or see a chaplain. The chapel and prayer room are always open and available for prayer or as a quiet space.

http://www.clicsargent.org.uk/Whatwedo/Dayinthelife/Jason-SocialWorker


Fasting guidelines before general

anaesthesia or sedation

If your child needs to have a general anaesthetic or sedation, special preparation is necessary for the procedure to be performed safely. This involves stopping your child eating and drinking before the anaesthetic or sedation. More specific information is available from the doctors and nurses on the ward where your child is admitted.

General anaesthetic

Children over 1 year:

No food or milk 6 hours before the general anaesthetic time.

Clear fluids like water or diluted juice, but not milk, up to 3 hours before the anaesthetic time.

Children under 1 year on regular milk feeds:

No formula or milk feeds for 6 hours before the anaesthetic time.

No breast milk for 4 hours before the anaesthetic time.

Clear fluids like water or diluted juice, but not milk, up to 3 hours before the anaesthetic time.

If your baby is having 2 to 3 hourly feeds, please ask your doctor or nurse for further advice.

Sedation

No food or milk 4 hours before the sedation time.

Clear fluids like water or diluted juice, but not milk, up to 2 hours before the sedation time.

It is important you check the time of the scan with the ward or day care so your child is correctly starved.

Please ask your doctor or nurse for further advice if your child is under 1 year old, or if they have other problems like kidney disease, low blood sugar or sickle cell anaemia.

For more information about general anaesthetics, please see our leaflet: Your child is having a general anaesthetic: information for families


Further sources of information and

support

Contact Magazine (CCLG) Magazine for families of children with cancer. Available on the ward.

Tel: 0116 249 4461 Email: [email protected] Website: http://www.cclg.org.uk/contact/

Children’s Cancer & Leukaemia Group Organisation representing all 22 children’s cancer treatment centres in the UK. Organises most cancer clinical trials.

Website: www.cclg.org.uk

Cancer & Leukaemia in Childhood (CLIC) Aims to improve treatment and support for children with cancer and leukaemia. Provides free accommodation adjacent to paediatric oncology units in certain areas. Funds home care nurses and crisis breaks via Social Workers.

Tel: 0800 197 0068 (Helpline) Email: [email protected] Website: www.clicsargent.org.uk

Leukaemia & Lymphoma Research UK research charity devoted to research into the causes, treatment and prevention of leukaemia and related diseases.

Tel: 020 7405 0101 Email: [email protected] Website: www.beatbloodcancers.org

Leukaemia CARE Provide support to families and to patients with leukaemia and allied blood disorders. Provide information, holidays, discretionary financial assistance, and support by volunteers (many with personal experience of the illness).

Tel: 0800 169 6680 freephone CARE Line Email: [email protected] / [email protected] Website: www.leukaemiacare.org.uk

Christian Lewis Trust Children's Cancer Charity 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.

Tel: 01792 480 500 Email: [email protected] Website: www.christianlewistrust.org

mailto:[email protected]

http://www.cclg.org.uk/contact/



http://www.clicsargent.org.uk/


http://www.beatbloodcancers.org/



http://www.leukaemiacare.org.uk/


http://www.christianlewistrust.org/


Macmillan Cancer Support This is a National Charity, working to help improve the quality of life for people with cancer and their families. It funds the Macmillan Nursing Service including Macmillan Paediatric Nurses, for home care and hospital support.

Tel: 080 8808 0000 (Cancerline – Mon to Fri, from 9am to 6pm)

Email: [email protected] Website: www.macmillan.org.uk

Cancerlink Provides emotional support and information in response to telephone and letter enquiries on all aspects of cancer, from people with cancer and from families, friends and professionals working with them.

Freephone support link: 080 8808 2020 Mon to Fri from 9am to 6pm Email: [email protected] Website: www.cancerlink.org

REACT (Rapid Effective Assistance for Children with Potentially Terminal Illness) Gives specific help to children who suffer from a potentially life-limiting illness, and their families such as grants for equipment, heating, clothing, and toys.

Tel: 020 8940 2575 Email: [email protected] Website: www.reactcharity.org

Contact a Family Contact a Family provides a network of support groups for parents whose children have special needs and disabilities.

Helpline: 080 8808 3555 Mon to Fri from 9:30am to 5pm Email: [email protected] Website: www.cafamily.org.uk

Neuroblastoma Society Charity, which aims to fund research into the illness and support families of children who have been affected by the disease.

Tel: 020 8940 4353 Email: [email protected] Website: www.neuroblastoma.org.uk

The Histiocytosis Research Trust An organisation devoted to raising funds for and commissioning research into histiocytosis.

Tel: 07850 740241 Email: [email protected] Website: www.hrtrust.org

The Dancing Eye Syndrome Support Trust Supplies information about Dancing Eye Syndrome and neuroblastoma and offers support by putting families in touch with each other. There is a newsletter and an annual meeting.

Tel: 01925 654 654 Email: [email protected] Website: www.dancingeyes.org.uk





http://www.reactcharity.org/


http://www.cafamily.org.uk/


http://www.neuroblastoma.org.uk/

http://www.hrtrust.org/


http://www.dancingeyes.org.uk/


Children’s Cancer Web Website indexing lots of children’s cancer websites.

Website: www.cancerindex.org/ccw

The Childhood Eye Cancer Trust Offers support and information to families. Publishes a newsletter and puts families in touch with each other.

Tel: 020 7377 5578 Email: [email protected] Website: www.chect.org.uk

Starlight Children’s Foundation Grants wishes and provides entertainment facilities in UK hospitals.

Tel: 020 7262 2881 Email: [email protected] Website: www.starlight.org.uk E-newsletter: [email protected]

Captain Chemo

Website: www.royalmarsden.org/captchemo

CancerHelp UK A free information service about cancer and cancer care for people with cancer and their families brought to you by Cancer Research UK. They believe that information about cancer should be freely available to all and written in a way that people can easily understand.

Phone: 080 8800 4040 Website: www.cancerhelp.org.uk

Some helpful hints when using the internet Virtually anyone has the ability to access the internet and enter information; therefore it is important to be aware that there is a lot of misinformation and misinterpretation on the internet. We recommend that when using the internet to access information you follow the guidelines outlined below:

Ensure the site is accurate and up-to-date

Ensure the information is referenced and dated

Ensure the editorial staff are qualified in offering medical advice

Access sites that are run by ‘reputable institutions’

Accessing the internet for information can be beneficial, yet overwhelming. If you require further information on anything about your child’s illness or treatment, please do not hesitate to speak to us. www.cclg.org.uk. How can the internet help us? A guide to childhood cancer resources online

http://www.cancerindex.org/ccw


http://www.chect.org.uk/


http://www.starlight.org.uk/


http://www.royalmarsden.org/captchemo

http://www.cancerresearchuk.org/

http://www.cancerhelp.org.uk/



Holidays and Holiday Insurance

If you are considering taking a holiday abroad it is important to arrange appropriate insurance cover. Listed below are some insurance companies who will undertake to provide medical insurance – provided that person is travelling with the permission of their doctor. You are still able to approach other companies who provide travel insurance. Most companies will require either a letter from the doctor or medical report form to be completed before a decision about cover can be made.

JD Consultants 44 High Street Farnborough Kent BR6 7BA Tel: 01689 859 102/3/4 01689 856 984 Fax: 01689 856 808 Website:jdtravelinsurance.co.uk

Roger Chant Associates Orcast House Cray Avenue Orpington Kent BR5 3TT Tel: 01689 877 919 Fax: 01689 877 991

Medi travel cover Ltd 76 Crooksbury Road Farnham Surrey GU10 1QD Tel: 01252 782 392 01252 780 190 Fax: 01252 783 698 www.insurecancer.com

Leisure Care Insurance Services Ltd Tel: 01793 750 150

Additional useful travel advice is available from: www.macmillan.org.uk

There are a number of different charities that provide free holidays for the families of children and young people on treatment - please contact the CLIC Sargent team for a holiday pack. Holidays to Barretstown Castle in Co Kildare, Ireland, are provided free of charge to children aged seven to seventeen who are currently on treatment or within four years of active treatment. If you would like more information, please ask a member of Safari Daycare nursing team.

http://www.insurecancer.com/



Useful words and abbreviations

Unfortunately, we sometimes use certain words and abbreviations that you may not understand. Please ask for an explanation, but here are a few of the very common ones you may hear!

Afebrile Normal temperature

ALL Acute Lymphoblastic Leukaemia

AML Acute Myeloid Leukaemia

Anti-emetics Medicines to control nausea (feeling sick) and vomiting

Apyrexial Normal temperature

BMA Bone marrow aspiration - test to take a small sample of bone marrow (see our leaflet for more details)

BMT Bone marrow transplantation

BP Blood pressure

CVC Central venous catheter – usually hickman line or portacath

FBC Full blood count - the test that checks the levels of Haemoglobin (Hb), platelets and white blood cells in your child’s blood

Febrile Raised temperature or a ‘spike’ in temperature

GCSF Granulocyte Colony Stimulating Factor

GvHD Graft versus Host Disease

Hb Haemoglobin - substance in red blood cells that carries oxygen

Intrathecal Drugs given into the spinal fluid during a LP

LFT Liver function test – test to check how the liver is working

LP Lumbar puncture - test where a needle is inserted into the spinal fluid (see our leaflet for more details)

Mucositis Inflammation of the lining of the mouth and gut

Nil by mouth The times when your child should not eat or drink before having sedation or a general anaesthetic

PBSCT Peripheral blood stem cell transplant

PTC Principle Treatment Centre

POSCU Paediatric oncology shared care unit

Pyrexial Raised temperature or a ‘spike’ in temperature

TPN Total Parenteral Nutrition - Food supplement given into your child’s bloodstream via a vein

TPR Temperature, pulse and respirations

TTO’s Medicines you are given before going home ‘to take out’ with you

U&E Urea and electrolytes - the blood tests that checks the levels of chemicals in your child’s blood

Remember, if you don’t understand what we’re saying, ask us to explain

Documents

FAMILY HELD RECORD - London Cancer · The Family Held Record is also a way to ... however the basic principles should ... febrile neutropenia advice- Supportive Care Protocol, Paediatric