Au tum n 2 012 Iss ue 56 : Supp ort Networks CoA helping hand for familiesn of childrent andact young people with cancer

Susan with her grandson Josh Cuddles all round Susan Miller reflects on the supportive role of grandparents when her grandson Josh was diagnosed with leukaemia.

e were looking after Josh, our weekends when my son-in-law took I were able to take her, ensuring the day 7-month-old grandson, while over. Overall, Josh was in GOSH for 7 could be normal and joyous. his mum and dad took his months. I would go up on the train armed W Josh needed a bone marrow transplant sister out. He was fractious and unhappy with plated meals so Sarah would eat to give him the best chance of life. and I sensed something was really something tasty, and come home with Thankfully, a donor was found so he had wrong. Next day, my daughter Sarah bags of washing. Whilst at the hospital, his transplant and had to be in isolation took him to the GP and he was referred I could give Sarah a break so she would with only his parents allowed in and to the local hospital from where he be able to shower or eat or get some one other – me! When Christmas came I was then taken by ambulance with his fresh air. Even things like hair washing spent Christmas Eve with him while his parents to Great Ormond Street Hospital were difficult with an extremely sick parents were at home with his sister. He in London. He had leukaemia. and needy baby to care for. She was and I watched the snow from the hospital exhausted and anxious. It was really hard as a grandparent coping window, wishing for Father Christmas to not only with my grandson’s diagnosis We also had to consider the needs of come and bring him health and life. We but with my daughter’s heartache too. Josh’s sister who was desperate to play had an unusual Christmas Day with the The help and support you can give has to a fairy in her School Fair so Grandad and brilliant staff making sure everyone had be practical, plus love, treats and cuddles as good a day as possible. (for all of them!). Continued on page 2 Sarah stayed at the hospital with Josh

during the week and came home at Milly

PAGE 5 Sheryl PAGE 8

Team Talk PAGE 9 Children’s Cancer and Leukaemia Group - www.childcancer.org.uk/contact Contact Issue 56: Support Networks

Continued from page 1 almost a truck to move all the things accumulated from the hospital), life Editor’s note... Unfortunately, he then developed veno- became more normal for us all with In recent weeks I occlusive disease and became extremely wonderful things to do again. The family have suffered the ill and, whilst he had been able to go were treated to a holiday in Disneyland heartbreaking situation home briefly between treatments, this Paris and there started a massive love of a very close friend time he needed constant care and life for all things Disney! being diagnosed with became centred around GOSH. Josh advanced cancer became very poorly but he would still Josh is 16 now – a strapping six foot and dying just two sit on my lap for a cuddle and manage a young man. He raises money for the weeks later. What has been the greatest little dance to his Disney videos. I can’t Leukaemia Trust by cycling 26 miles comfort has been the support that family throw those videos away! each year, and doing anything else he can to help. His passion is fishing and he and friends have provided each other. Eventually a breakthrough came. Josh goes off to College in September to take A random but ever growing email list needed to be anaesthetised and have a Fisheries Course. He hopes eventually has provided a means of updating as an endoscopy to see what was going to own his own Fishery. the news became progressively worse. on. We all sat outside his room awaiting But that same list has now become a news. There were lots of tears when The family were strengthened by this real source of support as memories we knew he was OK and they could awful time in our lives and we are all of happier times, and photos over the start him on medication. In the morning closer as a result. Thank heavens for years, are shared. Real friendships after we had all had a better night than strength and reserves that normally we are being forged from people who normal, we arrived at the hospital ready don’t know we all have! previously barely knew each other and to go and get breakfast to find Josh Josh undergoing treatment its likely that they will continue – any sitting up and giggling and demanding excuse to raise a glass to our much food. Thank God! loved and missed mutual friend! As someone who valued hugely her From then on Josh improved daily and friends, some of whom date back to on his return home (which required early childhood, she would have been Josh enjoying a holiday trip delighted at the way we are all pulling together to support each other. That support comes in different ways – practical, emotional, sympathetic. We all need support at times like this but what has become clear too is that we all have the capacity to offer support to others. The articles in this issue of Contact demonstrate that in very concrete ways.

Sue Ablett, Managing Editor Email [email protected]

Contact is a free, quarterly magazine for families of Editorial Board: Contact magazine was founded in 1998 children and young people with cancer. Contact aims Managing Editor – Prof Sue Ablett by The Lisa Thaxter Trust and CCLG. to reduce the sense of isolation many families feel Editor – Claire Shinfield Contact address: following a diagnosis of childhood cancer. Medical Adviser – Dr Martin English CCLG, 3rd Floor Hearts of Oak House, Contact is produced by the CCLG in collaboration Jenny Baston – Nurse, Leeds 9 Princess Road West, Leicester LE1 6TH. with CCPA (formerly NACCPO). Jane Cope – Nurse, Cardiff Mike Francis – Parent, York Tel: 0116 249 4460 Fax: 0116 249 4470 The Children’s Cancer and Leukaemia Group Katherine Greenshields – Survivor, London Email: [email protected] Charity number: 286669 aims to improve the management of children Rachel Hollis – Nurse, Leeds with cancer and advance the knowledge and The contents of Contact are the copyright of the Lesley Ingram – Parent, Glasgow study of childhood malignancy. publishers. Articles may be reprinted without charge Anthea Martin – Survivor, London provided that credit is given to Contact magazine. The Childhood Cancer Parents Alliance is a Rachael Olley – Parent, CCPA A copy of any reprinted article should be sent to the parent-run organisation with the common Gayle Routledge – Parent, Stafford editor at the address above. aim of working together to support Patricia Smith – Parent, Ireland children and young adults with cancer and Gill Thaxter – Parent, Coulsdon Please let us know your thoughts and feedback their families. about Contact by emailing [email protected] 2 www.cclg.org.uk News in brief Contact’s Medical Adviser, Dr Martin English writes... Walking for childhood Make a checklist cancer It may not be too late to join us on Emily’s Big Walk in September so sign up for your nearest walk today! The 15 would advise any nervous flyers not It also worked for me when I went on national walks aim to raise the profile to do what I did. That is, to spend a my trip last week because for once I left of childhood cancer and funds for your long-haul flight reading the excellent time to check over my list of what to pack I local treatment centre and CCLG. An book The Checklist Manifesto: How to and I didn’t leave anything behind! I was ‘Olympic-style’ torch will be passed Get Things Right by Dr Atul Gawande. visiting the 15th International Symposium from walk to walk. For more information, He is an American surgeon who writes on Paediatric Neuro-Oncology in Toronto please visit our website: for the New Yorker magazine and has which was a fantastic meeting looking at www.emilysbigwalk.org.uk published other books on the wonders, the state of the art of diagnosis, treatment achievements and developments as and care for children’s brain tumours. well as dilemmas, difficulties and In the 12 years since I first attended this challenges in modern medicine. meeting I was struck by how much the digital information age has progressed. He demonstrates how it is possible From 2x2 slides in carousels and an to reduce errors in clinical situations abstract book to everything in Powerpoint by using checklists to make sure that and a memory stick with all the abstracts everything is happening as it should. on it followed by the ability to sit in a For example, by introducing a checklist local coffee shop after the presentation of things to note before a patient is and find the articles referenced in the anaesthetised for surgery, before the talks on Google. Laboratory techniques operation starts and when the operation New website for survivors are progressing just as fast and one finishes it has proved possible to reduce A national support group for childhood keynote speaker described how a complications of surgery, and indeed and adolescent survivors has now researcher in his lab had been able to fatalities, in surgical settings in all areas launched its website: do in five months what had previously from very resource-poor nations to first- www.survivors-4-survivors.org.uk. It is taken 50 years in terms of identifying world countries. run by survivors for survivors so if you a subgroup of disease and developing have any stories, tips or advice to share It is not just about filling in a checklist. potential treatments for it. However, for then please contact the group direct. It is about introducing a system of the meeting to happen it needed to be teamwork where everyone feels supported, and many children’s cancer empowered to say stop if they think and brain tumour charities across the Family life and cancer that something unsafe or unplanned is world did exactly that so it could happen. Our latest booklet about to happen. More importantly, it The meeting also had parts about how it entitled Family is a tool to help change the culture in is possible to help and support children Life and Cancer is organisations to one where experience and their families when they have brain now published and counts as much as hierarchical position. tumours, or other malignant disease. is available from I have seen checklists work. If left to Many practical examples of this are treatment centres collect freetext information more than covered in this issue of Contact. and our website. 50% of important items (e.g. school, Finally, why should nervous flyers avoid immunisations) may be missed by the book? Among many examples of doctors admitting new patients to Information films checklist use Dr Gawadne gives details oncology wards. Telling them to try of five different air crashes whilst for families harder made no difference. Neither did illustrating the problems of not having writing it down in a letter and giving it to The films from the Children’s Cancer a checklist, or the advantages of having them when they started work in the unit. and Leukaemia Family Day held in one! Read it on the train … What made a difference was producing London in May 2012 are now available a structured pro-forma of questions (a Martin English is a Consultant on YouTube and our website: www.cclg.org.uk/childhood-cancer/ checklist) that they completed when Paediatric Oncologist at Birmingham cclg-information-friends-day-2012 seeing new patients. Children’s Hospital.

Contact Issue 56: Support Networks 3 Contact Issue 56: Support Networks A ‘listening ear’ for students Karen Thomas, a Specialist Learning Mentor for young oncology patients at Leeds, describes how The Learning Zone helps support patients’ school education whilst undergoing treatment.

attling through cancer treatment more, and so it is vital to support their learning. We offer vital encouragement is difficult enough without education as much as possible. and a listening ear to patients. We give worrying about what will young people a chance to focus on B We are very lucky to have three happen to your child’s education. being a ‘student’. specialist learning mentors as part of Whether treatment means a five- our team to look after our oncology Going back to school after months year-old missing those all important patients’ education. I work with the 13-25 of hospital stays can be incredibly first steps in reading and writing, an year olds, whilst Barbara works with the scary. There is an endless list of 11-year-old being in hospital when 4-12 year olds and both of our posts worries a pupil may have: fitting in they should be starting their first day are funded by a local Yorkshire Cancer with classmates; being away from at secondary school, or a 16-year- Charity - The Emma Maltby Memorial Mum and Dad; keeping up in lessons old juggling chemotherapy, it can be Fund. Pauline also works specifically or even just worries about getting up difficult to even think about how they with patients with acquired brain injuries for school at 7am! As mentors, we will manage. (including brain tumours). make sure we spend time with the Here at Leeds General Infirmary we young person and their family to work are extremely fortunate to have The “We give young people through any problems or worries. We Learning Zone, a hospital school with a chance to focus on link in with medical professionals for primary specialists (including one who their recommendations on issues such also specialises in Special Educational being a ‘student’” as mobility and fatigue. We discuss Needs), English, Maths and Science progress within the Learning Zone As learning mentors we act as a vital link specialists and a team of support staff, and with home teaching and draw in the child’s education, keeping school who work together to make sure that it all together into a meeting with in the loop about where a young person every school-age pupil who has been in school, so that they know how to make is in their treatment, making sure that hospital for more than three school days reintegration as positive and enjoyable school work is passed between school, receives appropriate support with their as possible as well as giving the student hospital and home teaching, ensuring education, either in the Learning Zone or the best chances of success. that all children being treated for cancer at their bedside. in Leeds have the best possible chance Sometimes it takes somebody who has This happens for any child in the hospital, of staying on track with their education. a foot in both camps, understanding but in the Learning Zone we understand both the education system and the The key to the Learning Mentor role is that our oncology patients can miss out ins and outs of cancer treatment, in breaking down barriers to learning. on entire school years, sometimes even to ensure that each young person’s First and foremost we try to ensure that all round best interests are looked cancer does not become a barrier for A chemistry lesson after so they can do well and achieve our young people. We also endeavour to what they are capable of despite maintain young people’s motivation for everything they have been through.

Creative play

4 Coping with support Emma and Paul Vaughan (parents of Milly) and Ginny Macintyre (mother of Alex) describe the amazing support they received from friends, family and online support groups. Milly ur daughter Milly is six years Prior to our journey to Florida we old and was diagnosed with an searched the internet for information Ooptic glioma when she was a about the proton experience but found year old. She has undergone two chemo nothing. While in Florida, I set up a ‘Proton cycles since then and was referred for Therapy Support Group For All Proton proton therapy in the US last year. Families’ on Facebook. Families that were there joined to support each other, and Support from family and friends has previous proton families joined to provide been crucial throughout, and our local information and support. There are now community and beyond have followed 135 members consisting of parents and Milly’s journey online via social media other family members of children going such as facebook and twitter through the proton journey, or waiting (@millysjourney) and via the local press. to go and wanting information. We have Milly’s school has also been wonderful adult proton therapy patients sharing and provides a lot of class support. their experience, and some healthcare We have utilised information and professionals wanting to see what they support from various charities can do to support families. I also use the such as CCLG, CLIC Sargent, Brain group to share links to charity websites Tumour UK and many others. The that I think the members would find best support though comes from helpful, and I arrange reunion outings other families going through the which are great fun! Online groups are an same thing. No one can really invaluable source of support for families understand unless they are going and I’m glad we are able to play a part in through it or have been through it. facilitating one of the many. Milly at school Alex hen Alex, our 13-year-old son, ringing but it was difficult to really discuss Alex every week, just sitting with him if was diagnosed with acute how I was feeling as I didn’t want that Alex felt unwell or took him out if he was Wlymphoblastic leukaemia conversation in front of Alex and I also feeling up to it. Edward and Alex wrote (ALL) our life fell apart. I will never forget didn’t want to leave his bedside. a diary during that first year, which Alex that Friday afternoon, five days before found very therapeutic. We hope to My husband’s parents were fantastic with Christmas, when Alex was rushed to publish this soon. Alex and often came to visit in hospital hospital in London as he needed to be and also once we were at home, which in hospital with an intensive care unit as he began his treatment. I went with him enabled me to have some time to get on and left my husband to look after our with other aspects of my life. They cared three other children. It was during these so much for Alex and the rest of our first few weeks and beyond that my family and that was such a comfort to me. support network to help us through this They took Alex out to play golf or just for difficult time developed. a meal, which was a real treat for him.

My friends were a wonderful support Another family friend who ran a local during this time. They would turn up football team that both my boys played at the hospital with home-cooked food in was also a great support. He had (Alex hated hospital food which was very cancer himself and understood what we unappetising). My phone never stopped were going through. He came to visit Alex with grandparents

Contact Issue 56: Support Networks 5 Contact Issue 56: Support Networks Back to Basics: A voice for parents and families In this article, Rachael Olley (CCPA Operations Manager) describes how CCPA is supporting and improving the lives of families affected by childhood cancer.

he Childhood Cancer Parents At the heart of what we do are A significant number of our member Alliance (CCPA), formerly the the families we serve – our Board groups are holiday providers such as TNational Alliance of Childhood members are all parents of children/ Barretstown, Camp Quality and Paul’s Cancer Parent Organisations (NACCPO), adolescents who have undergone Place and can be multi-location camp is a union of 38 organisations across the cancer treatment or childhood cancer providers or single-location holiday UK who share a mission to improve the survivors themselves so we know what homes. Some groups offer support for lives of families affected by childhood the journey is like for families and the specific ages and some offer breaks for and adolescent cancer. difficulties they face. the whole family.

We are a national representative voice Our member groups offer support in Lastly, we have our Associate-member for parents. We work with local, regional, many different ways and this diversity groups such as CCLG, The Teenage national and international agencies to is a testament to the ways in which Cancer Trust (TCT) and CLIC Sargent promote awareness, give support, input support groups/charities are formed - who offer national support on a large into research and carry out advocacy often by families who see a gap in the scale and who also input into research. activities that focus on the best interests provision of support that was given to We at CCPA often get enquiries from of children, teenagers and young adults them or who wish to set up a memorial families at varying stages of treatment with cancer and their families. research charity. One such group is an and endeavour to help find them the online bereavement support website support they are looking for. There called ‘A Child of Mine’ set up by Gayle are many areas where sadly there is Routledge and family who realised how not a local support group but usually useful a one-stop information site would there are charities or information be for bereaved families. sources in existence that may make Typically, families are helped by a family feel less isolated by their their local support group which is cancer diagnosis and we signpost often linked to a particular treatment them to these organisations. centre – CCPA groups in this category include: Candlelighters at Leeds General So how does CCPA support our Infirmary, PACT at Sheffield Children’s member groups? Hospital and SPOCC at Birmingham The strength of CCPA is the alliance Children’s Hospital. Most groups cover working together to serve families a wide geographical area, often many of children and young adults with counties. Local support groups carry out cancer. We link nearly 40 charities many functions and may include giving and organisations to create a stronger grants to families, providing holidays national voice representing the families and funding research or staff within the we serve whether on areas of research hospital setting. or national strategic planning.

There are also the national disease- Smaller groups benefit from an increase specific charities such as The in profile through association with Neuroblastoma Society, The Guy a strong national and international Francis Bone Cancer Research Fund presence in paediatric oncology. and the Childhood Eye Cancer Trust. We generate regular email contact and These groups offer support to families support on charitable issues, from service who have a child, adolescent or young provision and supporting families to adult with a specific type of cancer and management and admin, event planning many raise funds for research into their and fundraising, in fact any issue that a particular disease-type. support charity may encounter.

6 We hold regular Support Worker meetings to discuss issues faced by charities directly supporting families. Many Support Workers work in isolation at times which can be emotionally very demanding and the support given to these charity representatives is invaluable.

A key strength I feel is the wealth of knowledge, information and experience at our finger-tips. Many of our members have 30 years or more experience of working in this field and if a family or member group have a query we can use this experience to help them. Team of CCPA support workers Our international support network and lack of expertise, medication, publicity we believe that our ethos of The International Confederation of facilities, information, emotional support working together is the way forward and Childhood Cancer Parent Organisations and other resources. We are slowly by doing so we minimise the duplication (ICCCPO) is a worldwide network increasing our national effort to support of work that can be so costly to charities. of parent-led organisations with the this excellent work. common goal of caring for families affected by childhood and adolescent The way forward Get involved cancer. Founded in Spain in May If you would like to know more Our main aims are to continue to grow 1994, ICCCPO now has 147 member about CCPA and our list of support our membership, expand our national organisations in 81 countries. CCPA is groups/charities, please look at the and international work and to continue the UK representative to ICCCPO. CCPA website: www.ccpa.org.uk or to support both our member groups and contact Rachael: [email protected] or ICCCPO facilitates sharing of information the families they serve. We have grown tel: 01785 220637 / 07982 426 142. If and experience between parent groups greatly in the past few years. In 2005, you run a support group/charity and and countries to create more effective we had 17 member groups and now are interested in joining our alliance care for children, teenagers and their we have close to 40 member groups please use the above contact details. families around the world. but there is always room for more! Following our rebrand and rename ICCCPO also works with international in 2011 from NACCPO to CCPA we Supporting families organizations to promote awareness have been spreading the word that and action for children with cancer the charity has changed its name but including the International Society of the work that we do is essentially Pediatric Oncology (SIOP), World Health the same as it was in 1999 when Organisation (WHO) and UNICEF. NACCPO was formed by a handful of We participate in SIOP Europe meetings support groups from around the UK. and the annual SIOP world congresses, We aim to have an all-inclusive during which the annual ICCCPO membership that offers very low congress also takes place. We are member rates - full member groups excited to be hosting the 2012 ICCCPO pay just £30 per annum. By keeping congress in London – the first time it has the fees low we ensure that the money been held in England. This is being held groups raise is kept where it should from 5-8 October at The Barbican Centre be, for the benefit of their families. (www.siop2012.org). All of our members are independent ICCCPO members support the work of of CCPA in terms of funding and World Child Cancer (WCC), which is governance but all share a common based in London. Brainchild of CCPA aim of improving the lives of families co-founder Geoff Thaxter, WCC seeks to whose children, adolescents and improve treatment and care of children young adults have cancer. In a world with cancer in the developing world. In where there is so much competition these countries, access to specialist care between charities for funding and is limited or non existent due to poverty

Contact Issue 56: Support Networks 7 Contact Issue 56: Support Networks Easing the pressure Paul Gathercole, Assistant Director of Services for CLIC Sargent, explains why teenagers and young adults with cancer need tailored support services.

hen young people are it hard to keep up with studies saying social, psychological and health support aged 16 -24 they are often they had fallen behind. 93% of young for young people who are no longer Wstudying to go to college people said that their employment having treatment and may have been off or are at university. They might be had been affected and 41% said they treatment for many years. applying for work or may be already needed more support with getting or The service provides advice and support working and living independently. maintaining work. on a range of issues including health Some might have children and some Although specialist services for worries, relationships, work, education might be single parents. During this teenagers and young adults are being and finances. As well as discussing formative period of their lives when developed, young people with cancer practical issues such as applying for young people are making big decisions may find it hard to access high- work, ‘One Stop’ staff can talk about of their own, being diagnosed with quality, age-appropriate emotional and dealing with lasting physical effects of cancer is unexpected and has a huge practical support services compared treatment such as memory loss, or they impact on their lives. with younger children and older adults can provide advice on family issues. There are a range of emotional, practical for whom services may be better Our ‘More than my illness’ report draws and financial impacts of a cancer established. In recognition of this, a CLIC attention to some of the problems diagnosis and in 2010, we published a Sargent Young People’s Social Worker that young cancer patients face and report entitled ‘More than my illness: works alongside clinical psychologists, as services like the ‘One Stop’ aren’t Delivering quality care for young people a Teenage Cancer Trust Youth Support widely available across the UK, we with cancer’. The report found that 88% Coordinator and a Macmillan Clinical will to continue to work with other of young people said it was important Nurse Specialist to form the ‘One Stop’ organisations to help ease the pressure to have emotional support and 64% of service at the Royal Hallamshire Hospital of a cancer diagnosis on young people young people in education were finding in Sheffield. The ‘One Stop’ provides aged 16 to 24. Sheryl’s story

Sheryl Harrison, 20, from Chesterfield, “I was trying to get a job when I left any time and she’d come and meet was diagnosed with Ewing’s sarcoma school in 2008, but I had low self- me. It was so important to have other in May 2003 and had chemotherapy for confidence, so Annie worked with people around for extra support and ten months and three operations as part the rest of the One Stop team to tell although they were professionals, of her treatment. Sheryl said: “As well me about jobs that were available, they were like friends really. as having intensive treatment for cancer support me with the application If I hadn’t had the One Stop service there were lots of other things going process, and set up interviews. We and help from the whole team I on in my life as well, so Annie, my CLIC even rehearsed interviews and Annie wouldn’t have had the confidence to Sargent Young People’s Social Worker, pretended to be an employer. put myself forward for interviews or told me about the ‘One Stop’ service. extra support during my pregnancy. In 2010 I found out that I was pregnant, which was a shock to It was so important to everyone as we weren’t have other people around sure if I could have children, but then I sadly for extra support miscarried so Annie and the team gave I’m pleased to be in remission me lots of emotional now and my partner Christopher support and helped and I have a healthy daughter, when I lost the baby. Alissia, who is six-months-old I could call Annie at and was born on Boxing Day.”

Sheryl with her partner and daughter Alissia 8 Team talk Kate Wurr, Consultant in Child and Adolescent Psychiatry, and Jenny Baston, Research Nurse, at Leeds discuss the importance of providing support for clinical staff.

orking with children with cancer and their families can Wbe very sad, and the death of a child should never fail to touch all those who have known them. But on the whole staff have signed up to work in this area, finding it rewarding and challenging as well as having the potential to be devastatingly heartrending.

After working within paediatric oncology for 20 years offering nursing and psychosocial support, we felt that there was a lack of an informal group for nurses to meet up and chat about their daily experiences and any issues which had arisen. In 2007, we decided to set up a monthly group for ward staff to Group members discuss ‘involving children in decision making’. This gradually shifted focus to very protective to children where they financial climate there has been much ‘appropriately involving children and felt that they were effectively providing discussion about staffing levels and risk, families in decision making’ which was an ‘substitute parenting’. and incident reporting. issue very close to the heart of the ward. Formal child protection procedures Why does it work? around parenting led to considerable Issues we have covered turmoil within the staff group. We tried Our group has been running now for five The issue which seems to cause more to think through possible underlying years. Of course, the paradox is that when chronic stress and disharmony on the reasons for some of these conflicts – the wards are most stressed, less people ward is unpredictability and when things attachment issues within families often are able to come - and when the wards don’t go as smoothly as hoped. presenting as detachment from very ill are relaxed more can come (but have less children, extreme anxiety presenting as of immediate concern to discuss). We try Conflict is a factor. For example, families controlling behaviour or even hostility, to utilise quieter times to reflect on the can be in conflict with the clinical team grief presenting in ways that are difficult group’s purpose, how scenarios recur and for reasons such as questioning clinical to relate to. We discussed team dynamics, what we can learn – rather than seeing advice, not agreeing with what to and how different members of the team each new challenge as something we discuss directly with the child or young have different functions including some need to address from scratch. person or struggling with decisions providing a more containing function A key reason for its success is that around palliative care. Conflict within the while others feel they are left with the there is a focus (decision-making) which clinical team may also include clinical ‘sleeves up’ work while not always being has caught the interest of the team opinions, or consent issues. There adequately supported or informed. and has allowed positive and practical could also be conflict between different discussions to evolve around areas of clinical teams – paediatric oncology and At times we did reflect on a particularly real clinical tension. palliative care, or pain management, or sad time on the ward, and it seemed that adult services, or intensive care. Often this was valued as many felt that there We hope that our group will continue there may be a combination of some or weren’t many other places to do this. to grow and reinvent itself despite the all of the above. Sometimes particular Nobody seemed to feel unsupported or demands on staff time capacity in the families challenged ward boundaries that their colleagues were unsympathetic, current economic climate. It is vital that and rules which in turn on occasion led just that there wasn’t really time staff feel supported and motivated to to potential friction between the staff. anywhere else. We also discussed issues ensure patients and families are fully Some situations have led to staff feeling of a more practical nature. In the current cared for while undergoing treatment.

Contact Issue 56: Support Networks 9 Contact Issue 56: Support Networks Support via online communities Louise Penman from Macmillan Cancer Support discusses how online communities can help and support young patients and families affected by cancer.

inding support in online Libby Rhodes, Website Editor, explains: If you’d benefit from talking to other communities, or support groups, “In September Click4tic.org will shut people in a similar situation please do can be invaluable when seeking F down and automatically redirect people take a look and sign up.” help and comfort when a child, relative to the Macmillan site. This means that all All of these tools can be accessed or friend is diagnosed with cancer. There of our information about cancer will be through www.macmillan.org.uk/ are many benefits to joining an online in one place, and we’re building more community or support group such as the ability to resources for young people all the time. http://community.macmillan.org.uk/ participate and seek support at a time cancer_experiences/16-24_and_living_ that works best with your schedule, People who’ve moved across from with_cancer/default.aspx anonymity, and the convenience of TIC to the Macmillan community never leaving your home. group will hopefully already have noticed some improvements – Phoebe’s story Macmillan Cancer Support runs an online members can post messages Phoebe was diagnosed with skin community where people affected by immediately and receive fast replies. cancer at the age of 19, while she cancer in all areas can meet, make friends, We’ve got some exciting plans was studying at university. ask questions, and share experiences. coming up for our website and online It is made up of over 60,000 members, A doctor first pointed out a raised community, including improving how with almost 300 different discussion red mark on her arm when she was it works on mobile phones, so you’ll be groups based around everything from in hospital with a kidney infection for able to access the friends you make and cancer experiences and types to local a week in September 2010. It kept support they give from wherever you are. groups, campaigns and fundraising. growing and by December it looked There are also blogs where members of We want to make sure that our online like a jelly tot. She knew this wasn’t the community share their experiences spaces are useful and safe for all right and in February 2011 tests and chat rooms where members can get members, and unfortunately that means confirmed it was malignant melanoma. support from their peers 24 hours a day. we can’t allow under-16s to join as we It was later found to have spread to her can’t provide adequate moderation lymph nodes, which were removed. So what does this mean for to provide a safe online community young people affected by cancer? She had never been a sunbather or for this age group. Younger teens can used sun beds, so the diagnosis was a As for any age group, having a place still access all of our information, and shock. While going through diagnosis where people understand what you’re contact us on Facebook and Twitter. and treatment Phoebe was supported going through can be a big help during an Other organisations such as the Teenage by her boyfriend and she also joined uncertain and scary time. Young people Cancer Trust provide online support Macmillan’s online community which can join any group that’s relevant to them networks for under-16s. she found really helpful: “It’s given and a new group was set up in March We’ve had a lot of feedback about me the opportunity to talk to other specifically for 16-24 year olds living with how useful people find our online people in similar positions to me and cancer which replaces click4tic.org. community, and that’s down to the get advice and support from them, individual as they know how I feel and what it Help via video link members who really is like – something that has been make it up. invaluable in my recovery!”

10 Book review Understanding the journey: A parent’s guide to DIPG & By Dr Martin English, Contact’s Medical Adviser

ne of the hardest things I have to into sections of Understanding the do is when I meet the family of diagnosis, Treatment, Other care issues, Oa child who has just had a scan Research and End of life decisions. showing a diffuse intrinsic pontine glioma. The chapters are detailed summaries Never having met them before we have to and are then followed by short notes explain that there is a tumour in the Pons from the parents of children with DIPG which is one of the most important parts describing what the topic of each of the brain. We say that the prognosis is clinical trial meant for them. Even very poor and radiotherapy needs to start those parents or family members who as soon as possible. Often, the whole have a scientific or clinical background thing takes place on an outpatient basis. may want to note questions and then Hard as it is to give this news, it is even go over some of the diagnosis and harder to receive it. Families are left in treatment chapters with their child’s a state of shock. Many cope in different consultant or specialist nurses to make ways. Some do not want to receive sure they understand them. information others feel that they need to Every doctor or nurse looking after know everything there is to know about children with DIPG should read this the disease and its management. Others book. I certainly learnt new information. want practical advice about caring for Families may particularly be helped by a child with a terminal illness and what the practical information in Part III other they can expect to happen. care issues,and the chapter on steroids. Understanding the journey: A Parent’s It may contain too much information for Guide to DIPG is edited by Ruth some people. It shouldn’t contain too little. Hoffman and published by the American Childhood Cancer Organisation. The book can be ordered direct from Twenty-two chapters written by leading the American Childhood Cancer healthcare professionals are organised Organisation (http://acco.org).

Contact archive The wide variety of articles Diagnosis Normality Shared Care published during the year in Issue no: 47 / June 2010 Issue no: 55 / June 2012 Issue no: 25 / December 2004 Contact adds up to a valuable and Emotions Networking Siblings informative reference archive. If you Issue no: 43 / June 2009 Issue no: 38 / March 2008 Issue no: 22 / March 2004 would like any back issues, please contact the Editor (address page 2). Employment Nutrition Supportive Care Issue no: 42 / March 2009 Issue no: 39 / June 2008 Issue no: 33 / December 2006 Details of key articles in previous Empowerment Play/Enjoyment Surgery editions are listed on the web at Issue no: 53 / December 2011 Issue no: 35 / June 2007 Issue no: 44 / September 2009 www.cclg.org.uk Family and Friends Psychosocial issues Survivors Previous themes: Issue no: 46 / March 2010 Issue no: 28 / September 2005 Issue no: 34 / March 2007 Body Image Good Ideas Quality of Life Transition Issue no: 31 / June 2006 Issue no: 48 / September 2010 Issue no: 27 / June 2005 Issue no: 49 / December 2010 Best of Contact Identity Radiotherapy Treatment March 2011 Issue no: 52 / September 2011 Issue no: 40 / September 2008 Issue no: 54 / March 2012 Celebration Information Rehabilitation Teenagers and Young Adults Issue no: 50 / March 2011 Issue no: 29 / December 2005 Issue no: 45 / December 2009 Issue no: 23 / June 2004 Choices/Rights of the Child Isolation Relapse and Remission The Holistic Approach Issue no: 30 / March 2006 Issue no: 51 / June 2011 Issue no: 36 / September 2007 Issue no: 24 / September 2004 Coping Strategies Moving on and Changes Research Transplantation Issue no: 37 / December 2007 Issue no: 41 / December 2008 Issue no: 26 / March 2005 Issue no: 32 / September 2006 www.cclg.org.uk/contact/archiveContact Issue 56: Support Networks 11 Autumn 2012 Issue 56: Support Networks

Meeting others in the same boat... Jane Cope, an oncology nurse at the Children’s Hospital Cardiff, talks about how her support group helps young patients cope with living with a brain tumour.

ollowing diagnosis of a brain and gain confidence. Having both a tumour, an adolescent is faced nurse and social workers present at Fwith having to cope with a life- the group enables the young people to Quotes from threatening condition as well as physical feel safe with professionals they know and psychological changes to their life and trust and also allows parents to participants such as the loss of social contacts, peers encourage their adolescent to attend and and social isolation. Some patients also feel confident in leaving them! “I really look forward to coming have to deal with a loss of their future to the group as I haven’t got any Over the three years the young people due to difficulties in pursuing their friends due to having a brain have participated in a variety of activities education for either physical reasons or tumour. My eye sight is very poor such as bowling, pottery, climbing and learning issues related to their treatment. and I am much slower at school but cookery. These activities have allowed They also can lose independence as their the others in the group make me them to gain confidence, team build parents/carers are with them 24 hours a feel welcome and no different and and share experiences. They are able to day in the hospital and this can continue so it has helped me a lot.” accept one another’s disabilities without following discharge from hospital. This question, the more able help the disabled “I love meeting up with the young situation may appear completely alien and welcome new members so that they people’s support group. Over the to an adolescent who may have been immediately feel part of the group. years I have met other young people verging on independence and planning going through similar experiences for their future away from home The group is always well attended and as me and have been able to share they are involved in planning all the The paediatric oncology unit at the our feelings and learn about other future activities. Being part of this group Children’s Hospital Cardiff successfully ran people’s experiences while having has allowed the young people to talk a support group for parents whose children fun with the friends I have made. openly and freely about their experiences, and young people had been diagnosed The trips give me confidence that concerns and the effect that having a with a brain tumour. The parents mixed I am not the only person who brain tumour has on their lives. It has with other parents and talked about their knows what it is like to have a enabled young people who would never own experiences of having a child/young brain tumour. Without the group have gone on holiday on their own to take person with a brain tumour. Due to the I wouldn’t have the friends I have part in the Hole in the Wall Holiday and success of this group, it was decided that now and the support both myself the Ellen MacArthur Sailing Holiday. As a support group for adolescents with brain and my family have received” a result of attending a creative makeup tumours was also needed. workshop one girl has now gained a place “It’s great – it’s fun, it’s extremely A support group was formed three years on the creative make up course, which helpful to be with people who’ve ago to bring young people together in prior to attending the group she would been in the same boat as you. an informal setting to share experiences never have had the confidence to achieve. Even if we don’t ever talk about cancer in general, or even talk! I didn’t make pizza for the sake of making pizza but it was great fun. All the things we do, all sorts, it just turns the stress off really.”

Next issue of Contact

Due: 1 December 2012 Theme: Achievement Children’s Cancer and Leukaemia Group - www.childcancer.org.uk/contact 12 Jane (centre) with support group members