Information for Families Paediatric Oncology Team is part of Taunton and Somerset NHS Foundation Trust Patient Information
C o n t e n t s Tom Introduction Am I getting the best care for my child? Who are the main doctors who care for my child? Senior House Officers/ Registrars Key Worker Community Children's Nurses What support can I get whilst my child is being treated? Children's Educational Unit The Chaplains What to expect? What problems? What about the world outside? Life after treatment James 'The day Tom was diagnosed with cancer, as we left the hospital it began to rain. I remember thinking "if I can feel the rain, then this is really happening and if I can't, then this is a bad dream and I will wake up". I looked up and felt the rain on my face and it wasn't a dream but it was every parents' nightmare.' Sally Bunney, whose son Thomas has now completed treatment. This booklet has been written by members of the Children s Oncology Team to help you understand what help is available and from whom. The booklet's purpose is to answer, in simple terms, the many queries/questions often asked by parents of staff. We have seen the stress families suffer when their child is diagnosed with cancer or leukaemia. We understand that due to the stress caused, you sometimes forget to ask important, practical questions. We hope that this booklet will be of help as a practical guide to the services on offer here in Taunton and elsewhere for children with cancer and leukaemia. A m I G e t t i n g t h e B e s t C a re F o r M y C h i l d? A common question, at least at the back of people's minds. Children's Cancer services in Taunton are very much part of the larger South West regional service. Although Taunton is a small centre, we work closely with our experienced colleagues around the region to share care, and to combine the benefits of treatment close to home, with the expertise available in a large centre. You will see this happening in "combined" clinics, where local clinicians and visiting consultant medical staff from Bristol jointly see patients. Less obviously, you will become aware that telephone, fax and letter are regularly used to ensure that the Bristol team are kept fully informed of your child's progress while here, and that they will be informed of any unexpected developments. Bristol's oncology team are a part of the United Kingdom Children's Cancer and Leukaemia Group (CCLG), a national organisation that oversees new developments,clinical trials and research. There are 22 regional centres in the UK, and representatives from the UKCCSG are involved with international collaboration with many other similar organisations. This ensures that developments worldwide can be properly evaluated, and treatments given in the South West region keep up with current standards. Both our paediatricians here are associate members of the UKCCSG. 2 Patient Information Patient Information 3
W h o a re t h e M a i n D o c t o r s w h o C a re F o r M y C h i l d? Consultant Paediatrician Louise Newbury Qualifications: MBBS (Medical Degree) BSc (Science Degree) MRCPCH (Paediatric Specialist Exam) FRCPCH (Paediatric Specialist Qualification) Main Tasks: Dr Newbury is a General Paediatrician, looking after newborn, child and adolescent patients, in hospital and in outpatients. She is also the Lead Clinician for the Paediatric Oncology Multi- Disciplinary Team (MDT). She has a special interest in tumours and leukaemia, and also for other blood disorders (haematology). She job-shares with Dr Whiteford, providing weekday cover for inpatient/outpatient/community care for children with cancer in the Musgrove Park catchment area, and follow up for those off treatment. Between them there is a daily ward round of oncology inpatients and they alternate the weekly Wednesday oncology clinic and the Friday procedures list. Both doctors attend the combined clinics with the visiting Bristol oncologist and haematologist. Both doctors prescribe all the chemotherapy with double checking of each prescription. Availability: Monday Wednesday (9am to 5pm). Consultant Paediatrician Dr Linda Whiteford Qualifications: BM BcH (Medical Degree) BA (Science degree) MRCPH (Paediatric Specialist Exam) Main Tasks: Dr Whiteford is a General Pediatrician, looking after newborn, child and adolescent patients, in hospital and in outpatients. She is also the Deputy Lead Clinician for the Paediatric Oncology Multi- Disciplinary Team (MDT). She has a special interest in tumours and leukaemia as well as palliative care. She is the Lead Clinician for the Compass Team, a team which provides specialist palliative care services for children across Somerset. Dr Whiteford takes a lead on Paediatric Oncology teaching. She job-shares with Dr Newbury, providing weekday cover for children with cancer in the Musgrove Park catchment area, and follow up for those off treatment. Between them there is a daily ward round of oncology inpatients and they alternate the weekly Wednesday oncology clinic and the Friday procedures list. Both doctors attend the combined clinics with the visiting Bristol oncologist and haematologist. Both doctors prescribe all the chemotherapy with double checking of each prescription. Availability: Wednesday Friday ( 9am-5pm) Contact for both consultants Via Secretary on 01823 342214. 4 Patient Information Patient Information 5
Specialist registrar ST1-3 These are junior doctors (previously known as SHOs) You will probably meet them on the wards rather than in the clinics which are run by Consultants. There are 7 of them and usually 3 are working on the wards during the day. One of them is responsible for looking after all the patients out of hours on a rota. Their main job is to look after the day to day care of patients on the ward, for example seeing new patients when they arrive, organising tests and x-rays and giving some medicines. They are almost always around on the wards if you have any questions for them. Although they have not got the specialist knowledge of the senior staff, they will often be able to find out answers for you. Specialist Registrar ST4-8 These are middle grade doctors (also known as registrars ) who have the role of supervising the ST 1-3 specialist registrars and are responsible to the Consultants. There are seven registrars in all, and you are likely to meet nearly all of them at some point. Two of the Registrars cover the wards and work closely with Dr Newbury, Dr Whiteford and the Community Nurses in the care of the Oncology patients. Outside regular working hours, the Registrars are mainly responsible for supervising the care of the children, in liaison with the "On-Call Consultant". It is usually possible to contact the duty or "on-call" registrar during these periods via switchboard or the ward if you have any concerns or suspect that your child is unwell. Contact: Via switchboard: 01823333444 and ask for the "on- call" Paediatric Registrar or via Oak ward: 01823 342016 Key Worker At diagnosis, one of the Paediatric Oncology (CLIC) Nurses will be assigned to be your Key Worker. They will act as a main point of call for any queries you may have and will co-ordinate your inpatient and outpatient care. Their name and contact details will be at the back of this booklet. Ward Admissions When your child is admitted to the ward for any reason, one or two nurses will be allocated to your child. These nurses work in partnership with you to coordinate your child s care whilst in hospital. They will also act as your child s advocate, and help with emotional support for you and other members of your family. This will always be an oncology trained nurse. When you arrive at the unit for admission, your child will be given a cubicle. We have two cubicles with separate bathroom facilities for Oncology patients. They also share a separate courtyard garden. The cubicles should also have a television and a video, and usually a fridge. There should also be some toys that are age-relevant, and a bed-settee for you to sit and sleep on. If you require a hot-drink, there is a kitchen with tea/coffee making facilities and a parent s sitting room. Due to health and safety risks, you are not allowed to bring hot drinks onto the ward. You can, however, bring a flask of tea/coffee into the cubicle. The named nurse can obtain information to locate an interpreter should you need one. Children s Community Nurses (CLIC nurses) Andre Clinchant and Gillian Terrell There is a team of community oncology nurses based at Musgrove Park Hospital. They are part- funded by the charity CLIC/Sargent to offer a specialist service to oncology families. They hope to avoid the admission of children to hospital wherever possible, and to reduce the stay of children in hospital by: Providing nursing care in the patient s own home including taking blood samples and administering some chemotherapy. Providing advice and support to families and carers to enable and empower them to care for their sick child at home. Liaising with GPs and other professionals and hospital staff to provide a seamless transition between hospital and the community Acting as a resource for other professionals such as Social 6 Patient Information Patient Information 7
Workers and schools/colleges etc. Andre and Gillian have been senior nurses on the ward before obtaining their community nursing qualifications. They both hold further qualifications in Paediatric Oncology. Gil also works for the Compass team and is a specialist in Palliative Care. Andre also carries a General Paediatric community caseload. They both work full-time but half of their time is dedicated to Paediatric Oncology nursing. Contact Gillian Terrell 01823 344957 or mob..07887724745 Andre Clinchant 01823 342078 or mob. 07778552761 CLIC/Sargent Social Worker Margaret Barker We are fortunate to have a CLIC/Sargent Social worker based within the Child Oncology team. The social worker s role is to offer emotional support to children on treatment, their parents and their siblings. Maggie is able to offer advice, support and help with making benefit claims such as Disability Living Allowance and Invalid Care Allowance. She also liaises closely with the various charities involved with child cancer/leukaemia care. CLIC/Sargent, for example, offers financial support to meet travelling costs of going to and from hospital. CLIC have furnished accommodation in Bristol, enabling parents to stay overnight whilst their child is being treated at Bristol Children s Hospital. The Christian Lewis Trust can help with short holiday caravan breaks. There are other charities offering support that Maggie can tap into. Contact: Margaret Barker, Social Worker on 01823342704. Compass Team The Compass Team is a dedicated Children s Palliative care team, based here in the hospital but covering the whole of Somerset. They provide care for those with life-limiting and life-threatening conditions both in the hospital and at home. They are experts in symptom control and also provide additional psychological support for patients and their families. They have strong links with both the children s hospices (in North Devon and North Somerset). Contact: Via the oncology team or GP C h i l d re n s E d u c a t i o n U n i t The Teacher in Charge, Jenny Burch, with a Learning Support Assistant, teach all children of school age who are well enough to receive education and who have been in hospital for at least three school days. Children with special needs and children re-admitted receive education from day one if they are well enough. Children receive education in our schoolroom, in beds, in wheelchairs, or within their isolation cubicles if necessary. This education may be for as little as one morning, or for several months. They teach all children across the ability range from all types of schools. They liaise with the pupil s school if he/she is a long stay patient or if admitted regularly for treatment. They maintain links between school, parents and home tutors to ensure continuity of work and to minimise isolation. They aim to provide education in a happy and relaxed atmosphere where the children can forget their aches and pains and have some normality. Play Specialists For all children, pre-school to adolescents our team of play specialists provide services ranging from distraction therapy for unpleasant procedures, through play therapy for phobias, to providing the most up to date Videos and Computer games for those bored on the ward! Contact: Through the nursing staff on Oak Ward The Chaplains The Chaplains are available to support patients and their relatives at all times. Simply tell the nurse that you would like to see the Chaplain, and he/she will contact them. Please do not worry about being religious! A hospital can be 8 Patient Information Patient Information 9
a worrying and lonely place, and the Chaplain is simply ready to come alongside in any way that may be helpful. They can listen, advise, seek information, keep you or younger members of the family company, as well as pray and fulfil a sacramental role if that is what is required. They can also contact your own Minister if you prefer if he/she is available. The Hospital Chapel is situated on level 1 of the Duchess Building, opposite Triscombe and Dunkery wards, and is always open, with a light on. It is a longish walk from the Children s Unit but well worth the effort! A peaceful haven where you can rest, relax and renew your strength. Contact your child s teacher to see if there is any work they can continue while in hospital. Let the teachers know of any specific problems where one to one teaching could help. Go and see what they do to make sure your child s stay in hospital is as happy and normal as possible. Contact Via nursing staff on Oak ward or on extension 2515 or bleep 2442. Out of hours contact via switchboard 01823 333444 W h a t To E x p e c t We know that you will come into contact with lots of new investigations and terms concerning your child s illness and treatment. We have briefly explained some of them here, but please ask, at any time, if you would like to know more about them. There are so many people all giving you bits of information now that it is very hard to take it all in, and we do understand this, so please don t worry if you need to ask several times - we are always happy to find the information that you want. There are also other booklets that explain various cancers and treatments, for example Fighting the Big C and A Parents guide to Children s Cancer. The Social Worker and CLIC Nurse will have copies of these booklets so please ask. Hickman Line This is a soft plastic tube which will be used to give chemotherapy and some other medicines, such as anti-sickness medicine to your child.it will also be used to take blood samples, rather than having to use needles. The Hickman Line is fed into a large vein in the neck after entering under the skin on the chest. Bone Marrow or Bone Marrow Aspirate Marrow is where blood is made. It is found inside bones and samples are usually taken from the hip area under a general anaesthetic. Some types of cancer can affect the bone marrow and a sample is taken to check for this. Chemotherapy This is the general name given to the medicines used to treat your child's cancer. There are many different medicines, and the staff caring for your child will give you more information on them as they are used, or when you want them to tell you. Lumbar Puncture This involves taking a few drops of the fluid which surrounds the brain and spinal cord, by inserting a fine needle into a gap between the bones of the spine. It is done under a general anaesthetic, so that it is as stress- free and pain-free for your child as possible, and will help with the diagnosis of your child's illness. It is also used in certain illnesses to give some specific chemotherapy White Blood Cells These are healthy cells in the blood which the body uses to fight Infections. We sometimes call these neutrophils. One of the side effects of chemotherapy is that the number of white cells may drop, so making your child more vulnerable and less able to fight off infections. It is important for us to know whenever your child's temperature is high and we will ask you to monitor it when you go home and let us know immediately if it rises, so that antibiotics can be given quickly if an infection develops. 10 Patient Information Patient Information 11
Red Blood Cells These cells carry oxygen around the body. When the number of red cells (or haemoglobin) drops, your child may look pale and feel tired or have headaches. A blood transfusion may be needed to boost the red cell number again. Platelets These blood cells help blood to clot when we want it to, such as when we have a cut. If the platelet count in the blood drops after chemotherapy, your child may experience things such as nosebleeds. A transfusion of platelets can be given to prevent this. Bruising and petechiae (pin-prick bruises) are more common than nosebleeds. W h a t P ro b l e m s c a n w e e x p e c t? Bone Marrow Suppression This is a fall in the number of healthy blood cells produced by the bone marrow, causing problems which have been mentioned previously vulnerability to infection, bleeding problems and tiredness. Blood samples will be taken via the Hickman Line to check on the levels of these cells. They will fall after a course of chemotherapy (usually in about 7 to 10 days) and can take several weeks to recover. Nausea and Vomiting Most people have heard of these as being side effects of chemotherapy. We will always give anti-sickness medicine to your child with their chemotherapy, and with recently developed medicines available, this is much less of a problem to patients than it used to be. 12 Children will all react to and cope with treatment slightly differently, but we know that there are certain side effects that everyone will face. Because the medication which is used to treat cancer is so strong, it will have effects on other areas of the body than those which specifically need to be treated. The treatment will affect cells in the body which divide into new cells most rapidly all cancer cells do divide very quickly - but will also affect cells produced in the bone marrow (white cells, red cells and platelets) in the mouth, throat, stomach and bowel and hair follicles. Infection Whilst their white blood count is low, your child is vulnerable to infections. These may come from other sources, but most infections result from germs which normally live on your child s body, such as on the skin, in the gut or in the mouth. If, whilst on treatment, your child develops a temperature i.e. 38 degrees for half an hour or 38.5 degrees once, you should telephone the ward and arrange for your child to come in. It may well indicate an infection and intravenous antibiotics given through the Hickman line will need to be given promptly. Chickenpox and measles are infections which can cause serious complications and every effort should be made to avoid any possible contact with them. If contact occurs, please ring for advice as soon as possible. Hair Loss This is a temporary side effect of chemotherapy, and your child s hair will re-grow after treatment ends. Hair frequently grows back a different colour! Most younger children adapt well (it can be harder for parents often) and will choose to wear a hat or cap outside. Wigs can be provided for those who wish to have one. Hair loss can also be a side effect of radiotherapy to the brain. If a high dose is required, then hair loss may be more long term in these patients. Weight Loss This can be a result of loss of appetite which can occur when the taste of food changes to your child. Many children find they no longer like the taste of sweet foods. It may also result from the effects of chemotherapy on the stomach and mouth lining. It is important for us to monitor your child s weight. Any favourite foods should be encouraged. A dietician from the hospital will be involved to provide advice as necessary. Your child s appetite will return to normal once the treatment is completed. Feelings When any family encounters such a shock as cancer, the reaction is often mixed. Some feel they are able to cope, and others feel afraid, sad, angry, guilty, isolated, tired, or confused. Some may Patient Information Patient Information 13
also experience physical symptoms such as lethargy, tightness in stomach, inability to sleep, or headaches. All these reactions and feelings are normal. A good way to handle the repercussions of this shocking experience is to acknowledge the way you are feeling and to talk about them. You will be surprised how much better you will feel if you can do this. There are many people available to talk to. There are your friends, relatives, and professionals such as nurses, doctors and social workers. We also have a psychologist working with our team who we can arrange for you or your child to meet if you wish. You should also be aware that people within the family show their feelings in different ways. This doesn t always mean that they don t feel as scared and concerned as you are. It will benefit yourself and your child if you try and overcome these problems together by being honest with each other, and talking openly about the cancer. You may need some help in achieving this. Don t be afraid to ask. We are there to help you. W h a t a b o u t t h e w o r l d o u t s i d e? During your child s treatment, it is easy to become isolated from your usual friends, daily goings on, and the world in general. Some people may be unsure of what to say to you, because your child has what is considered to be a frightening illness. It may be that you need to make the first move, and approach them. Try and make time for your usual leisure interests. This may help you cope with the extra demands that your child s treatment will incur. During this time in your family s life, it is often difficult to focus on anything else except your child and his/her treatment. It is important to remember other areas of your life. You can do small things to keep in touch with the world. This may help reduce feelings of isolation. Although you may not feel like smiling, a smile may be the signal to a friend for a chat, giving an opening for some support. Remember, you, your partner and your other children need attention too. Do try and keep some of your routines, It will help you feel in control of your own and your family s life. This will help your child s return to normal family life following his/her treatment. L i f e A f t e r Tre a t m e n t At first the great sense of relief that 100 weeks of treatment were all over, and that we had all managed to make it this far. We knew that there were no guarantees, but the odds of a favourable outcome were good, and so we went from there. The weeks turned into months and then years all stepping stones towards the Holy Grail - 5 years remission. Along the way, at least at first, every cough, cold, sore throat, lump, bump or rash can, in the mind, be construed as a relapse with mad dashes to the nearest Oncology Unit for a check up. But don t fear, this diminishes as time goes by, and the anxiety with it, then gradually the feeling that it is all over gets stronger. Good Luck! Pete and Paula and Family (6 years on) (Daughter Sophie diagnosed as having ALL, aged 3 years) Useful Internet Resources Some families find the internet a useful tool. These resources we feel are the most up-to date and well researched. www.swcancerhub.org our local parent support organization. www.cclg.org.uk/families this is the website of the UK childrens cancer and leukaemia group. It provides many useful free downloads, leaflets and booklets on children s cancer and it s effects on the whole family. www.clicsargent.co.uk CLIC-Sargent also have lots of information and downloads on cancer in children and young people www.teenagecancertrust.org a site specifically for teenagers and young adults with cancer, provides excellent support groups and networks. www.macmillan.org.uk a site for adults with lots of information on chemotherapy. 14 Patient Information Patient Information 15
Yo u r o w n u s e f u l t e l e p h o n e n u m b e r s Hospital: 01823 333444 (Switchboard) Wr i t t e n b y m e m b e r s o f t h e C h i l d re n s O n c o l o g y Te a m Compiled and written by: Consultant: Dr Newbury/Dr Whiteford 01823 342214 (Tracey secretary) 01823 342068 (oncology office) Louise Newbury Andre Clinchant Gilian Terrell Suzanne Heaynes Ward: Family Doctor: Oak Ward 01823 342016 Thank you to all those who have contributed to make this booklet possible: Dr Harris All other contributors Community Nurse: Health Visitor: Gillian Terrell 01823 344957 07887724745 Andre Clinchant 01823 342078 07778 552761 Social Worker: Margaret Barker 01823 342704 07920108503 MPH_PIL_521/WhitefordFeb12reviewFeb13 This leaflet can be translated, or supplied in large print, braille or audio. Please contact Medical Photography on 01823 342505 or patient.information@tst.nhs.uk