here - Little Hearts Matter

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 3Just GivingIt is great to announce that this month you have all reached afantastic milestone.Since we started to use the services of Just Giving you haveraised over £100,000 - yes ONE HUNDRED THOUSANDPOUNDS plus gift aid.That money has helped your charity to provide so much for somany people. Thank you to all of you who have used thisservice.It makes fundraising so much easier. Go on, have a look atwww.justgiving.com or go to one of our current pages suchas www.justgiving.com/lhmlightsofloveCongratulationsCompetitionWinnersThank you to all the children who sent in their drawings of ahospital appointment. The three lucky winners wereLucy WhiteAge 4Olivia SmithAge 7We would like to pass on our bestwishes to Isabel, David, Matthewand Rachel Baumber on the birthof their son and baby brother,Thomas. Isabel is a Trustee ofthe charity and the Chair of theInformation Service group.David is Treasurer and Trusteeof Little Hearts Matter.We would also like tocongratulate Lindsey, Paul andThomas Hooks on the birth oftheir son and baby brother,Samuel. Lindsey has been amember of our InformationService group for many years.Calum HamiltonAge 9Granting magical wishes to children and young peoplefighting life-threatening illnesses.If you would like a wish to come true for your child pleasecontact them.website: www.make-a-wish.org.uk/telephone: 01276 405060email: info@make-a-wish.org.ukFundraising IdeaYellow MoonMany of you will be aware of the Yellow Mooncatalogue company who sell thousands of Arts andCrafts products for both the young and not so young.Yellow Moon gives a donation of up to 25% of thepurchase price on any order you may place to us.Why not take a look at their catalogue atwww.yellowmoon.org.ukShould you decide to order please quote SourceCode SLI 12789 on yourorder form.3

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 4MedicalThe article below looks at sport and exercise for children withsingle ventricle heart disease.Written byLynne KendallClinical Specialist Physiotherapist Congenital CardiologyLeeds General InfirmaryIs it safe for children and young people withsingle ventricle heart conditions to exercise?Absolutely Yes! There are very few people who willbe advised not to do any exercise at all. Yourcardiologist will tell you what you can do and if thereis anything you are better to avoid. Everyone isdifferent so you must get individual advice aboutyour own heart problem.How much exercise?Everyone (yes that does mean you too) should tryto do regular physical activity. It may be that youhave symptoms, such as breathlessness, fromyour heart problem that limit the amount of activityyou can do, that is okay, just do what you can but atyour own pace and your own level.A really good guide to how much activity youshould do is the ‘Talk Test’, you should apply this toall activities/sports/play that you do. You shouldalways be able to talk when doing any activity evenwhen you are a bit ‘puffed’.If you have enough breath to sing then you needto put a bit more effort in, but if you are toobreathless to talk you need to STOP and RESTuntil you can speak again! You are much better tostop and rest BEFORE you get to this point thoughas it is not good for your heart to work so hard. Tryto learn to ‘pace’ yourself and recognise when youare exercising at the right level.Current public health guidelines for children 1 ,which apply to everyone including those peoplewith medical conditions, recommend a daily total of60 minutes moderate intensity physical activity onmost days of the week. Now, before you all yell ‘noway!!’ please read on:Y For children with single ventricle (or anycongenital heart disorder) the daily total of 60minutes can be ‘collected’ in 10-15 minuteperiods throughout the day if necessary.Y ‘Moderate intensity’ means enough to makeyou breathe harder (feel a bit ‘puffed’) and feelwarm, this may happen at quite a low level ofactivity but this is okay as long as it is morethan YOU normally do.Y ‘Most days’ means at least five times a week; itis very important to exercise regularly to feelthe benefits; now and again is just not goodenough!What kind of sports/activities are okay andwhat is it better to avoid?You probably need to think about the type ofsports/activity that you do, especially if you are a bitbreathless and/or are taking medicines such asWarfarin, because some activities are better thanothers for people with heart problems.How much you can do depends on your ownheart problem and how well your heart functionsduring exercise (your cardiologist can tell you moreabout this).It is important that you exercise but it is importantto stay safe too; this means choosing activities thatyou enjoy but maybe avoiding some things whichcould make your heart too tired.• It is usually better to avoid the really strenuousteam sports or competitions where you have torace against other people as these will makeyour heart work too hard. For example,activities such as basketball, triathlon,competitive level swimming or cycling,distance running.• Sports where you can get badly knocked orpushed over are generally not a good idea,especially if you take medicines such asWarfarin or if you have a pacemaker, forexample, hockey, rugby, football, judo.• If you have symptoms such as dizziness orfainting then avoid water-based activities;horse riding; motor sports; climbing etc wherea fall could be very harmful.It might help to think about what exercise involves:There are two basic types of exercise calledisotonic and isometric. Most activities will involve abit of both but there are some important points tothink about when choosing an activity/sport:1. Isotonic exercise (may also be called dynamicor cardiovascular exercise).This type of exercise includes things like swimming,cycling, walking and dancing. This type of exerciseis generally better for people with congenital heartproblems as long as you remember to always usethe ‘Talk Test’ as a guide to how much you can doand when to rest.2. Isometric exercise (may also be called static,weight or resistance exercise).This includes exercise often using weights and4REFERENCES1. NICE public health guidance Jan 2009;PH17Promoting physical activity for children andyoung people: www.nice.org.uk /PH172. Pelliccia A, Fagard R, Bjornstad HH,Anastassakis A, Arbustini E, Assanelli D,Biffi A, et al. (2005).Recommendations for competitive sportsparticipation in athletes with cardiovasculardisease: A consensus document from thestudy group of sports cardiology of theworking group of cardiac rehabilitation andexercise physiology and the working group ofmyocardial and pericardial diseases of theeuropean society of cardiology.European Heart Journal 26: 1422-1445.3. Hirth A, Reybrouck T, Bjarnason-Wehrens B, Lawrenz W, Hoffman A.(2006).Recommendations for participation incompetitive and leisure sports in patients withcongenital heart disease: a consensusdocument.European Journal of CardiovascularPrevention and Rehabilitation 13:293-299.4. Graham TP, Driscoll DJ, Gersony WM,Newburger JW, Rocchini A, Towbin JA.(2005). 36th Bethesda Conference:Eligibility recommendations for competitiveathletes with cardiovascular abnormalities.Task force 2: Congenital heart disease. JAm Coll Cardiol 45: 1326 - 1333.

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 5machines, such as weight-lifting, some athleticsthrowing events and gym equipment. Othersinclude: rock-climbing, boxing, some martial arts,rowing/canoeing. Some people may be advisedagainst some of this type of exercise because itmay put more of a strain on the heart and bloodvessels; others may be able to do some of thembut at a low level of intensity. Always ask if you arenot sure.Remember, you do not have to be ‘sporty’ orathletic, or join a gym, or play for a school team, inorder to take part in physical activity/exercise.Walking your dog, drama groups, using a Wiisports/fit, or dancing to your favourite music forexample can be excellent exercise. If you do enjoysport that is okay, but if you don’t it really does notmatter, just find another way to keep active doingsomething you enjoy. Any activity is better thannone at all!What about PE and sports at school?Young people should be encouraged to take part inphysical activity at school at their own pace andwithin their own limitations. This may mean theschool making modifications to lesson plans forindividual pupils to allow them for example to takepart fully in skills and rules teaching sessions, butduring strenuous activity finding an alternative foryoung people (maybe help with coaching, orrecording/timekeeping duties) to keep themincluded with their peer group as much as possible.It is important that schools are provided with up-todateinformation about individual’s heart conditionsand given detailed guidance for, or limitations to,physical activity; parents can ask theircardiologist/liaison nurse for help with this.General adviceIf there are any concerns about physical activityand exercise then always ask your cardiologistand/or cardiac liaison nurse or congenital cardiacphysiotherapist for individual guidance and advice;remember everyone is different and heartconditions may change so always ask aboutexercise at clinic appointments and ring or write ifqueries come up in between appointments.Any new or unusual symptoms during, orimmediately following exercise should alwaysprompt you to stop and rest and if they do notresolve then report them to your doctor. It is‘normal’ and indeed recommended to feel warm,breathe harder and feel your heart beat fasterduring exercise. You should stop to rest if you feeldizzy or faint; feel unwell in any way; or becomeunusually breathless.There are both European 2,3 and American 4,5guidelines which are the consensus opinions ofworldwide expert congenital cardiologists. Theymainly refer to competitive sports participation butprovide a useful benchmark for reference; theyhave recently been revisited comparing thedifferent guidelines 6 . However, it is essential thatpatients always discuss their exercise participationwith their own cardiologist as clinicians may havedifferent opinions on patient management.What is becoming increasingly evident fromresearch in the adult congenital cardiac populationis that exercise intolerance is not uncommon in thispatient group. The reasons for this are multifactorialbut some non-clinical problems arising fromchildhood include: fears or misconceptions aboutthe nature/severity of the cardiac defect; lack ofinformation or understanding about the conditionand exercise; relatives/teachers either preventingthe child from doing any, or unnecessarily limitingexercise; some teachers pushing the child to domore exercise than safe/recommended for theircondition; misunderstanding between (perceived)cardiac symptoms and lack of fitness.We should all try to promote ‘healthy living’ forthis patient group and provide timely, detailedindividual information regarding exercise.KEY POINTS• Think about how much effort you put intoyour activity but always listen to your body,use the ‘Talk Test’ and stop to rest whentired.• Remember, mainly dynamic (isotonic) isusually preferable to high static (isometric)exercise.• Being short of breath when you exercisemay be because you are unfit and notanything to do with your heart problem.Most people can do more than they think!Alfie Yeoman5. Maron BJ, Chaitman BR, Ackerman MJ, etal. (2004).Recommendations for physical activity andrecreational sports participation for youngpatients with genetic cardiovasculardiseases. Circulation; 109: 2807-2816.6. Pelliccia A, Zipes DP and Maron BJ. (2008).Bethesda conference #36 and the Europeansociety of cardiology consensusrecommendations revisited.J Am Coll Cardiol 52: 1990 - 1996.Our son Alfie was born withHypoplastic Left HeartSyndrome 11 years ago.Although we have always beenblessed with the fact that hecame through all three stages ofthe Norwood Procedure verywell, as he grew older it becameapparent that he could notparticipate in full with any of thecontact sports that his friendswere playing.It was whilst driving a golfbuggy during a game of golfthat his dad was playing in, thatAlfie showed some interest.From this we decided to letAlfie have group lessons to seeif he enjoyed the game orindeed showed any potential.Over and above anyexpectations we could have hadit became very obvious that Alfiehad some extraordinary naturaltalent.He has progressed to havingtwo lessons a week. Joining hislocal course, Crowlands Heath,and participating in competitionsgenerally held fortnightly.He has participated in theEssex under 12 championshipfor the last two years and morethan held his own with two top15 places.Guided by the professional athis club, Marcus Radmore, weare all hoping he can fulfil hispotential and hopefully becomea professional in the future.We have found that the sportoffers Alfie a very healthyexercise and surroundings andobviously a sport that he canparticipate in despite hiscondition.Janet Yeoman5

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 6FeatureSafe and Sustainable ServicesChildren’s Cardiac Surgery Services Review and ServicePlanning.What this means for Little Hearts Matter’s members.“I am writing formally to request that theNational Specialised CommissioningGroup undertake a review of theprovision of paediatric cardiac surgicalservices in England with a view toreconfiguration”.Professor Sir Bruce KeoghNHS Medical DirectorLittle Hearts Matter has been involved withthe work to improve congenital heartdisease surgical services since the review andreport compiled following the crisis at BristolChildren’s Hospital in 1998.The aims of the report and subsequent reviews andservices recommendations have been discussedby cardiac teams throughout the country.• Kennedy Report, 2001 (the Bristol RoyalInfirmary inquiry).• Paediatric and Congenital Cardiac ServicesReview Group, 2003 (the Monro report).• Professor Boyle and Dr Shribman workshop,2006.To date only a few of the recommendations madehave been taken forward.Minimum StandardsThis was a nationally recognised set of surgicalmedical and care standards worked on by theBritish Congenital Cardiac Association, CongenitalCardiac Nurses Association, Children’s HeartFederation (LHM input) and the British CardiacSociety. These were supposed to form the basis ofall audit and service improvements.Central Cardiac Audit Database - CCADThis is a national audit of surgical results that has,for the first time, allowed comparisons to be madebetween units. The results are available toprofessionals and the general public.Unit’s results are measured against the nationalstandards and results are policed by the CCADteam and BCCA.So why do national services need to bereviewed and surgical provision rationalised?Who are the review team?• Sub-specialisation is increasing. This means that there aremore specialist doctors needed to provide top class care in eachhospital team.• Training and mentoring of doctors requires large centreexperience.• Working time legislation - European directive requires largernumbers of doctors.• Critical mass of procedures - there is evidence that larger units,with lots of experience, provide higher surgical success rates.Children’s Heart Federation - the voice of the user (LHM is oneof the voices)British Congenital Cardiac AssociationAssociation of Cardiothoracic AnaesthetistsSociety for Cardiothoracic Surgery in Great Britain and IrelandRoyal College of Paediatrics and Child HealthPaediatric Intensive Care SocietyNHS CommissionersNHS in Scotland and WalesHow is the NHS medical service funded? - each team of commissioners budget for their area of workExamplesNationalCommissionSupra RegionalSpecialistCommissioningRegional SpecialistCommissioningLocal Based Commissioning• Transplants (not Renal) • Rare Cancer • Rare NeuroMuscular Disorder.50 million people• Paediatric Cardiac and Neuro-muscular Services •Severe Burns Care • Cleft Lip and Palate.5 to 50 million people• Children’s and Young People’s Cancer • Haemophilia •Renal Transplant1 to 50 million people• General Acute Medicine and Surgery100,000 to 1 million people6Practice Based Commissioning• Minor Surgery • Endoscopies • District Nurses100,000 people

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 7What are the aims of this review and thesubsequent service recommendations?• The NHS must provide only the very highest standard of carefor children and their families, regardless of where they live orwhich hospital provides their care.• A world class congenital cardiac surgical service.• Centres should provide care that is based around the needsof the child and the family and which takes account of thetransition to adult services.• All relevant treatment other than surgery, including follow up,should be provided as locally as possible to the family.• Clinical standards should be agreed and met by all centres.It is important toremember that the centresoffering surgery or specialised CardiacCatheter treatment might change.All other Cardiac Care will remain atcentres spread throughout thecountry as they are now.Where are the units situated now?SCG CollaborativeNorthern ZoneMidlands ZoneSouth Eastern ZoneSouth Western ZoneNHS Trust1. The Newcastle-upon-Tyne Hospitals NHS Foundation Trust2. Leeds Teaching Hospitals NHS Trust3. Alder Hey Children’s NHS Foundation Trust4. University Hospitals of Leicester NHS Trust5. Birmingham Children’s Hospital NHS Foundation Trust6. Great Ormond Street Hospital for Children NHS Trust7. Royal Brompton and Harefield NHS Trust8. Guy’s and St Thomas’ NHS Foundation Trust9. Oxford Radcliffe Hospital NHS Trust10. University Hospitals Bristol NHS Foundation Trust11. Southampton University Hospitals NHS TrustCurrently there are 11 Congenital Paediatric Cardiac Surgery centres in England.There are 30 surgeons working between them doing some 3,800 procedures.What does the review and recommendations mean for users?That there will be 30 plus surgeons doing over 3,800 operations per year in centres that can offer the highest level of surgical treatment,the best ITU care and ongoing medical support for all children and well informed cardiac and general health support closer to home.What happens next?Draft standards circulated for comment Sept 2009National stakeholder event Oct 2009Final version of standards circulated Nov 2009Assessment of centres against standards Jan 2010SCG’s submit recommendations July 2010NHS Management Board considers recommendations July 2010Public consultation begins Sept 2010Implementation of recommendations Jan 2011Formulate Standards1. Network approach2. Prenatal screening3. Making choices4. Patient and family experience5. Access to services6. Age appropriate care7. Excellent care8. Team delivered9. Safe and Sustainable servicesThe LHM team will keep you informed throughout the process.7

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 8FundraisingOn Your MarksDid anyone notice summer happening? Didanyone have lovely BBQ’s every weekend!! No,I didn’t either but lots did happen during thesummer and loads of you helped me to raise thefunds for everyone to receive services that theyneed, when they need them and for free too!Like everyone else LHM has not beenimmune from the credit crunch and at times wehave struggled to raise the £25,000 that isneeded every month to carry out our work foryou all. So with that as a background where do Iget my motivation from?Well it’s you and your children who motivateme on a daily basis. Whenever I meet with thechildren as I did at Birmingham City FootballClub recently I am in awe of their determinationnot to let their heart condition get in the way ofliving a full and as active a life as possible. Theyare amazing kids who receive so much supportfrom you the mums, dads and families. It’s greatbeing in your company.Kev’sNewsThen of course there are those of you whostep forward and really do help us to helpeveryone by organising a fundraiser or takingpart in one of the ideas that I put in thefundraising pack or on our website or by openinga door for us to get to businesses or by finding alocation for a clothing bin for me...These members inspire me all the time andthat’s why we introduced the InspirationalFundraiser of the Month Award to recognisesomeone doing something a bit special for us all.And you too can see that motivation on thewebsite and throughout this and every edition ofthe newsletter. Every day I speak to or hear frommembers and their families who have joined withme to help raise the income that we need tokeep going and more importantly to respond toyour needs and expand our services whereneeded.So thank you to everyone again for yoursupport and thank you also to the children whohave written to me over the past few months andwho have become involved in fundraising. It’s apleasure to be involved with you all.Oh and thank you to those who supported my100 mile personal walkaround duringSeptember. You are a great reason and I hadgreat fun doing it for you.Website - please join with others and have alook at the Fundraising pages and do try and getinvolved. Your support can in many ways help usachieve our aims for this and next year.On Your Marks for Little Hearts - thank youto all of you who turned up and supported ourthird run at Shugborough Hall. It was great tosee so many of you and great to get the chanceto talk.Can I ask if you have raised sponsorshipmoney, that you get it to us before Christmas.Finally and as always, it is so difficult tofeature everyone in the newsletter or on thewebsite, I do try but please accept my apologiesif your story does not feature. It does not makeyour efforts any less important.Best wishes for a lovely time this Christmasand thank you for making work so worthwhile.Kev BazeleyFundraising Managerkevin@lhm.org.uk8Three Menin a BoatThree intrepid fundraisers Andy Hey withmates Denis O’Mahoney and Mike Shununder the name of ‘Three Men in a Boat’took on the high seas, well the RiverThames, from the 5th to 11th July androwed the 92 miles from RichmondBridge in London to Oxford and all toraise funds to help all the familiessupported by Little Hearts Matter.A great supporter of ours, Andy sayswhen asked why he helps us.“Why? you may ask. Indeed, we askedthat of ourselves... The reality is thefriendship, the fun, the challenge and theopporutnity of raising a HUGE amount ofmoney for a very special charity.”Well they did, Andy and his team and ofcourse his supporters have raised well over£14,000 from this adventure alone!Well done and a LHM hug to everyoneinvolved in this tremendous effort.A Very Special LadyWe had a lovely letter from Charlie and WilliamJones from Stithians in Cornwall telling us allabout their wonderful Great Nan Mary who sadlypassed away in March.Much loved Great NanaMary, pictured withthe boys played ahuge part intheir lives andthey, familyand friendsgave a verygenerousdonation in hermemory, a donationthat will help us tosupport other families just like theirs.Thank you boys and thank you Mary.

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 9Wonderful BikersSamantha and Robert Todd literally got ontheir bikes to help raise funds for us allrecently when they rode the 69 miles from StDavid’s to Aberystwyth and raised £483. Ittook them 6 hours and 10 minutes. Thanksguys that’s brilliantAnother wonderful mum who has taken tothe road for us is Donna Cornock who livesin Scotland.being able to help other mums and dads andin Jack’s name.Thank you Donna, you are a true inspiration.Donna rode from Lanarkshire to Leeds,that’s over 200 miles and in memory of her Edward Shaw’s Aunty,little boy Jack has raised over £2000 for us Lisa Marshall and herthis year.family who live on theDonna tells Kev that she gets so much from London to BrightonBike Ride route set upa refreshment stall atthe side of the roadfor us and sellingpancakes raiseda wonderful£150.Thanks LisaJunior TriathlonThree sporty schoolgirls put on their running shoes... and got on theirbikes... and made a splash at the swimming pool to raise money for LHM!Pictured from left to right, Kathryn Morris (11), Kate Rodway (11) RachelMorris (9) decided to do a sponsored junior triathlon for Little HeartsMatter and raised a whopping £174.61 in the process. They each ranfor more than a mile, cycled around three miles and swam 160 metres.The girls, from Marshfield, Cardiff, are neighbours of Charlie Turner,who has HLHS, and wanted to do something to help children like him,who are born with only half a working heart. Thank you girls, and welldone!Friends like theseLucy McAllister is so lucky to have so many friends in her schoolin Ballycarry, Northern Ireland. They had great fun when they hada huge cookie bake and made delicious chocolate chip and raisincookies. Wow, they sound so yummy.And guess what they raised loads of money and appeared in thelocal paper!! Superstars - everyone of them.Thanks kids you’re just grrrrrrrrrrrrrrrreat!Shifnal Golf ClubAgain, inspired by the work of LHM, Val Daviesthe Lady Captain at Shifnal Golf Club and hermembers have spent the year holding golfdays, raffles, auctions etc and have donatedover £5,000 to enable us to offer furtherservices to all our families.Val tells me that they are all so proud to havehelped so many children. Val, we at LittleHearts Matter are proud to know you. Thankyou so much.Can your golf club top the efforts of Shifnal?Go on have a goMurray takes the plunge!Dad Murray Ratcliffe from Ayr, Scotland alongwith 20 colleagues from the Belhaven BreweryGroup took their lives in their hands on 17th Maywhen they leapt into space to raise vital funds.Murray whose son Dylan is his inspiration hasbeen behind a number of outstanding fundraisingactivities during the last year. This latest teameffort has raised over £5,000.A huge thank you to all at Belhaven BreweryGroup for their wonderful and continued support.Marks and SpencerEncouraged by a member of staff, LisaHaile, whose little girl Paige has HLHSevery member of staff at the Erdingtonbranch of M & S took part in raffles,bikeathons, wet T-shirt competition anddinners to raise over £5,000 for yourcharity.Well done to Patrick at M & S and allwho supported LIttle Paige - Thank youOver 60’s ClubGreat friends of John and Mandy Hands -the over 60’s Club at Welford-on-Avonheld a raffle and Strawberry tea and raised£60. Well done to you all. Kev says “ Anychance of an invite next time - I lovestrawberries!”Wacky Dress DownKathleen and Laura Galloway fromDuneane Primary School whose littlebrother James has HLHS joined with alltheir school mates to raise funds. Thechildren held dress down and wacky hairdays as well as a sportathon! There are only35 children in the school and they managedto raise a staggering £800 for us.Some of the children are pictured along withJames’ mum and LHM’s Jaclyn McAllisterreceiving the cheque from some very proudchildren. Humbling isn’t it!9

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 10Spotlight On...In every issue we will feature articles where we will talkabout different aspects of education and cover ideas aboutpossible sources of financial support to help you.EducationDeveloping a Healthcare PlanEducation is so vital to all children, and everyparent will want to ensure that their child’s heartcondition does not become a barrier to themaccessing a good education in order to movetowards an independent fulfilled life as an adult.In this first article, we are focusing on how todevelop a healthcare plan. Every child with asingle ventricle heart condition should have ahealthcare plan in place in school. Somechildren need support with their education,however many manage very well in mainstreamschools with some thoughtful adjustments to suittheir needs. We will cover other aspects ofeducation in future newsletters, such as how toaccess additional support if your child needs it.A healthcare plan is a way of making sure thatmedical information about your child is availablein an easily accessible and understandableformat. It is a document held in school identifyingthe level of support your child needs throughoutthe day, signs and symptoms to look out for andwhat to do in an emergency. It should be writtenin non-medical language which can beWritten byIsabel Baumberunderstood by a range of school staff. Thehealthcare plan should be used as a tool to helpeveryone to understand your child’s needs.When developing the plan, it can be a goodidea to go through a typical school day and writedown every aspect of care which your childneeds which is different to their peers in any way.This section needs to include all the commonchallenges for the children within their day atschool: ability to exercise, need for energy-filledsnacks, coping in cold weather, concentrationlevels, homework, etc. The plan should alsoinclude information on your child’s diagnosis,treatment plans, medication (and effects) plusany specific limitations your child may have. Theplan should also set out the best course of actionin the case of an emergency, for example:-• if a child on anti-coagulation therapy should fall;• if they become uncontrollably breathless;• if they complain of chest pain.What action should the school take?Who should the school call?It can be really helpful to have a laminatedinformation card with a plan of the actionsneeded if a child falls ill in school. Whendisplayed on the school office wall, the PEPlease don’t hesitate to contact the LHM office if youhave any queries about any aspect of education.We currently have booklets published on ‘EarlyYears and Infant School’ and ‘Junior School’, whichare available free of charge to members. Furtherpublications about education are currently beingwritten. We also have a Benefits Booklet, whichcovers a whole range of ideas.We’d also be really pleased to hear about any otherideas members have.department, the staff room and in any relevantclassroom it allows school staff easy access tothe emergency information. It is also useful tohave the child’s medical information available totake to hospital in the case of an emergency.If other health or social teams are involvedwith a child’s care it is important that they areable to add to any health plans or educationplans. For example a physiotherapist may haveexercises that could be incorporated into a PElesson. Or a psychologist may advise that asupportive approach to hospital should beintroduced into the classroom.People who can help with writing your child’shealthcare plan are the health visitor (for under5s), the school nurse, your community nurse (ifyou have one) and your Cardiac Liaison Nurse.Once the healthcare plan is written, the healthvisitor or school nurse should then talk it throughwith the school staff, and provide any trainingnecessary, such as administering medications.Little Hearts Matter can provide you withsample healthcare plans used by other parents -you will of course need to remember that everychild is different, but some of the formats andideas used by other families may be helpful.10BenefitsHelp with Hospital CostsIn this article we thought we would focus oncosts associated with a stay in hospital. Whenyour child is in hospital, there can be many extraexpenses involved, such as car parking, notbeing able to cook your own meals,accommodation, travel, and of course for somepeople there may be a loss of earnings whilethey care for their child.If you are finding it hard to cover these costs,the first person to talk to should be your CardiacLiaison Nurse or the hospital’s social worker,who should advise you about any hospitalspecific sources of funding. They will knowwhether there is currently money available andwhat the criteria are for applying. This issometimes referred to as an emergency fund,and may be held by a local charity. Otherhospitals may have money specifically to helpwith parking.If your family is on a low income, and youknow in advance about your child’s hospital stay,you could approach either the Social Fund or theFamily Fund.The Social Fund gives various types ofpayments designed to help people on a lowincome with specific costs. The purpose of thefund is “to ease exceptional pressures onfamilies”. Community Care Grants may beapplicable for families with disabled children e.g.costs of hospital visiting. Further information isavailable by visiting www.dwp.gov.uk then type‘guide to social fund’ into the search box or youcan contact your local Jobcentre Plus.The Family Fund gives grants to low-incomefamilies to meet the additional needs of caring fora severely disabled child. The value of the grantdepends on the items requested, familycircumstances and the funding available. Thereis no entitlement to a grant from the Family Fund.Hospital visiting costs have been funded.Eligibility includes income related points (grossincome less than £23,000 or £25,000 in Walesand savings of £18,000 or less). Furtherinformation is available by telephone 0845 13045 42 or from www.familyfund.org.ukFamilies on income-related benefits should bein contact with the hospital benefit office to findout about help with travel costs to and fromhospital appointments.If you live in Scotland, you could tryapproaching Chest, Heart and Stroke Scotland,a charity which offers welfare grants e.g. forholidays, hospital visiting, heating, white goods.You will need a sponsor (e.g. health visitor) toapply on your behalf. Further information isavailable from www.chss.org.uk or telephone0131 225 6963.If your family has private medical insurancewhich includes cover for your child (this isn’talways possible, as many insurers will not coverpre-existing medical conditions), you can applyfor a payment for each day that your child isbeing treated in an NHS hospital rather thanbeing treated as a private patient.

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 11Ask the ExpertsHere we ask professionals to answer some of the commonquestions asked by our members.Dr Oliver Stümper,Consultant Paediatric CardiologistBirmingham Children’s HospitalI have been told my child hascollaterals - what does this meanand how does it affect his treatmentChildren who are born with complexcongenital heart disease associated with areduced blood flow to their lungs cansometimes develop collateral vessels.What are collaterals?If a baby is born with a malformation of theheart and a lack of blood flowing to the lungsto collect oxygen, the child will have lowoxygen saturations (The amount of oxygen intheir blood). They are cyanosed, (bluecoloured lips and finger nails) and may bebreathless on mild exercise or feeding.Collaterals are connections, like normal bloodvessels, that can develop in children withcyanotic heart disease.There are two types of collaterals.Systemic arterial collateralsThese abnormal vessels originate from thebody blood vessels, in particular the aorta,and grow towards the lungs. They can formwhen a child has had a long period of cyanosis(blue lips and fingernails). The collaterals aimto take more blood to the lungs where it cancollect oxygen. This is the body's response tothe long standing low oxygen saturations.These collaterals make the child less blue butcreate more work for the heart!Systemic venous collaterals.These are abnormal blood vessels thatoriginate from the veins taking the blue bloodback to the heart. They develop normally afterthe second operation, the Cavo Pulmonaryshunt. After this operation the pressure in theveins in the upper body half is greater than thepressure in the lower body half. With thatsmall veins can enlarge and can allow blueblood from the upper body to run down to thelower body rather than having to squeezethrough the lungs. These collaterals make thechild more blue, but do not increase the workfor the heart.How are collaterals diagnosed?When children with single ventricle disordersundergo cardiac catheterization or MRIscanning investigations it is possible to clearly?see the collateral vessels. When there is alarge collateral vessel it may be seen during aroutine ECHO (echocardiography).How are collaterals treated?Once collateral vessels have been found theCardiac team will assess if they need closing(occlusion). Small systemic arterial collateralswill normally disappear after the Fontanprocedure has been performed. Largesystemic arterial collaterals should normallybe closed by a catheter procedure as they putstrain on the heart and raise the pressure inthe lung arteries. The child may be morecyanosed after this, and the Fontan operationmay have to be performed earlier.Large systemic venous collaterals in youngchildren after Cavo Pulmonary shunt operationshould be closed by catheter. This will makethem less cyanosed, as more blue blood goesto the lungs, and frequently the Fontanoperation can be delayed. Small systemicvenous collaterals identified just before theFontan operation can be ignored.Lights of Love and Cards - Christmas 20092 New Christmas FundraisersFirstly, and a lovely new idea for 2009, is ourTree decorated with your Lights of Love.As you know the idea is to give us all acollective focal point for Celebration,Remembrance, Happiness, Joy or any otheremotion that you wish.Every year and starting right now you areinvited to purchase your own light or lightsfor a minimum donation of £5. Your lights oflove will shine on our tree throughout theChristmas period. You can of course make alarger donation if you wish.Your Light(s) of Love will be switched on at 6p.m.on the 6th December 2009 and will shine rightthrough until the 12th day of Christmas.To purchase your light of love you can visitwww.justgiving.com/lhmlightsoflove whereyou can see messages already left by others. Oryou can complete the form enclosed with thisnewsletter.Our second new idea is the alternativechristmas card which you should alreadyhave received. They are designed for theoffice wall or classroom. They invite people towrite their Christmas greetings on the cardand pay a fee for doing so - you set the fee asyou see fit - simple idea, you raise funds forLHM and everyone saves time.If you would like some more please contactthe office.11

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 12Personal StoryBelow Kay and Colbie-Kate Ross share their story.Written byKay & Colbie-Kate Ross12Well, here we are two days beforeColbie-Kate’s 7th birthday, we canhardly believe it, we never thoughtwe would see her get here.The morning after she was born a nurse cameinto the room, had a look at Colbie-Kate then toldme she needed to take her away for some tests.I phoned Stuart, her daddy, and told him to getup as soon as possible. When he arrived wewere taken into this horrible little room - we justknew this was a bad news room. We were toldher heart hadn’t formed properly, there were lotsof things wrong with it so they couldn’t really giveus a name, but a couple of names of the thingswrong were Pulmonary Atresia, AVSD and RightAtrial Isomerism. They said that it wouldprobably be kinder just to let her go as they didn’tthink she would survive the operation that theycould give her.We thought a little different and didn’t thinkthere was a choice, we had to try and give ourtiny baby a chance. We had to have hope. Soafter getting transferred from the special babyunit in Edinburgh to the The Sick Children’sHospital at Yorkhill in Glasgow, our preciousbaby had her first operation at six days old. I canremember being in the waiting room in ICU andasking out loud, why us, when another lady whowas waiting told us we were special parentspicked for a special baby. It gave us a differentview on things.She was doing well and before long she wasmoved up to the ward. It wasn’t easy trying tofeed her with a tube through her nose into herstomach but we had to until she learned to suckon the bottle. Her little body was so tiny but itnow had a huge scar under her tiny armpit. Wewere scared to touch, hold or cuddle her in casewe hurt her. After two weeks she provedeveryone wrong and for the first time in her littlelife we were taking her home, a place we neverthought she would get to see. This was a hugemilestone for us, but we were told that althoughshe had done so well there would be moreoperations and she probably wouldn’t do asgood. There was no way of fixing her heart, thereis so much wrong with it and that they could justimprove things for her. As long as we still haveher here with us and she’s happy we can onlytake one day at a time.After we were home, Colbie-Kate made goodprogress and was walking at nine months oldand a proper little chatterbox, she was on specialmilk called Infatrini to give her more calories butluckily she kept well.Then in June 2003 just before her first birthdaywe were sent to Yorkhill for a catheter test andwas told there was a slot for the followingMonday for her next operation (another BTShunt like her first one but on the other sideunder her arm). We don’t know how we didn’tnotice how blue she was, I think you must justget used to it, but we didn’t realise how much shewas needing the operation!Two big scars already and she wasn’t evenone yet. Again, she proved them wrong andrecovered well and was home in plenty of timefor her first birthday.May 2004 and Colbie-Kate had her secondcatheter test, then the doctor came to talk to usand said they weren’t sure what to do next. Theywere going to discuss it again and talk to us atthe next outpatient appointment. We were toldthen that in six months to a year, Colbie-Katewould have to go through a major operation to tryand repair some of her arteries; this was a hugeoperation, a lot bigger than the other two. Wecould only go home and enjoy our time with her,every minute was precious. We had a lovelyChristmas and tried to fill her life with as manylovely memories as possible and now we hadher little sister Charlie with us, she had someoneelse to enjoy it all with! (After lots of scans andlots of worry, Charlie was born healthy).The waiting for the postman every morning fora letter with her operation date was awful, I’msure he thought I was stalking him behind thedoor! The consultant had told us to telephoneYorkhill if we didn’t get a date soon so we did,and found out it would be in about three weekstime. Then one day, there was a message on ouranswer machine so I phoned back and was toldshe would be admitted on Friday (three daysaway), with her operation being on the Monday.We waited until they took her to theatre, thenluckily we got a room at the Ronald McDonaldHouse as we had done on previous times, whichis a godsend as we live 100 miles away. We gotsettled in the room, Stuart was playing someshooting games on his laptop and I decided towrite all my feelings down and my memoriesfrom Colbie-Kate’s birth onwards, not somethingI usually like doing - writing, but I think it helpedme take my mind off things and now I’m glad I

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 13did as I have notes for writing this!The pager went off about seven hours aftershe had gone to theatre. We went to ICU to seeher and the surgeon came to tell us she wasdoing well and the operation couldn’t have gonebetter, I knew she was still not out of the woodsbut it was a bit of relief to hear it had gone well.This was her first zipper scar and it was a bitfrightening at first for her, I can remember gettingher a mirror to have a look.That was in April 2005, after she got homethings were good again, she seems to thrive andis a happy little girl. In May the following year wetook Colbie-Kate and Charlie to Walt DisneyWorld in Florida where we all had a fantastictime, and we could look forward for a little while.We had a little boy called Boyd in May 2007 andagain he was heart healthy. Colbie-Kate startedmainstream school in August 2007 and apartfrom not being able to do as much physicallythan the other children she copes well.Now, I’m going to pass you onto Colbie-Kateas she wants to tell you the rest of her storyherself, what a big girl - we are so proud of her.My StoryI had my last operation on May the 1st2008 at Yorkhill Hospital. I rememberwaiting for the appointment coming in thepost and it seemed to take ages, but oncewe got it we had to get my daddy home, heis in the Royal Navy and was away, far away.My daddy managed to get home in timeonly for my operation to be cancelled foran emergency. I got a new date for twoweeks later. As it was getting closer I wasgetting more terrified about what wasgoing to happen to me, would I be okay?Would it be sore? Would they draw lines onme to see where they were going to cutopen? I had so many questions and theywere frightening me.We arrived at Glasgow on the Tuesday toget the pre-op tests done and I got to sayhello again to all the nurses and doctorsthat have looked after me since I was a tinybaby. The night before my operation I hadto start fasting but I had to go on a drip ofglucose as sometimes I go funny whenfasting. They already put the cannula in myhand and it is very sore, this is the worst bit.In the morning when we got to the theatreI felt sick and started crying, I didn’t want togo, even though it was going to help me.My daddy took me through then they gaveme special medicine in my cannula to makeme go to sleep - I started counting. Daddysaid I’m a red rogue as I got to eleven!Waking up in intensive care isn’t verynice, I wanted a drink and they wouldn’t let metake sips of water as I kept being sick. I had comeoff the ventilator quickly but still had the littletubes up my nose for oxgyen. I had lots of othertubes and wires all over my body and my chestwas very sore, I remember them giving me an x-ray and it was very sore trying to get me in placefor it.The next day they let me go up to the ward,but I was still being sick so they were giving meanti-sick medicine to try and stop it. Then theystopped the morphine they were giving me tostop me being sore as sometimes it makespeople sick. I was sick for about five days,eventually it started being less each day and Imanaged to eat a little more. I have always beensick a lot from being a little baby but not asmuch as that. I had two drains with two tubesgoing into my chest, we used to call them myhandbags when we were trying to get to thetoilet!Before my operation I would wake at nightwith very sore legs and mum or dad would giveme Calpol, put cold wet cloths on them and sitand rub them until I got back to sleep. Onenight just after my operation mum had tophone dad at Ronald McDonald to come overas she was worried as I was screaming in painwith my legs, again the nurses could only giveme paracetamol. The next day I started onWarfarin, which I’m going to be on for life, andI’ve not had sore legs since. Two special nursescame and showed me, mum and dad how to doan INR test and we (luckily) managed to get ahome testing machine as we live so farfrom the hospitals that do fingerpricking. We are getting on well with itand haven’t had any major problems (iteven came to Florida with us!)I had lots of visitors and got lots ofcards and lovely presents from familyand friends. The hospital teachers cameto see me and we wrote a story, didsome sums and played someinstruments while singing! I got to goto the medi-cinema which was faband me and mum watched ‘The UglyDuckling’. The clown doctors visitedme too and they really cheered me upand made me laugh, they are sofunny.I got home the day before my little brother’sfirst birthday and I was so glad, I didn’t want tomiss seeing him. I managed to get back toschool before the end of term and I reallyenjoyed being in P2D.In February we decided to do anotherCookie Bake like we had done in P1 for LHM,and we had great fun baking them then I wentaround all the classrooms selling them. Shortlyafter we did a sponsored walk to raise funds forbooks for the school. It was a very long walkbut I managed it with just a few breaks in thewheelchair.In May this year we went to Florida again andone year to the day since my operation I got toswim with the dolphins, which was fantastic, weall had a great time.In June, my dad got a phone call from ourHeadteacher, Mrs Easton, to say the school hadnominated me for a PC Karen Balfour award.We got invited to the new High School inEyemouth where we live for a big presentationnight. I was a little nervous but when they said Ihad won, my mum and dad said they were soproud of me. I got nominated because of thefundraising I’ve done and how I get on witheveryday life even though I have a brokenheart.Colbie-Kate13

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 14FeatureThe article below looks at medical transition for our youngmembers as they transfer from children’s hospitals to adultunits.Written bySuzie HutchinsonChief Executive, Little Hearts MatterMore and more of our young members are growingto the age where they will need to transfer fromchildren’s hospitals to adult units.This is all part of growing up and becomingindependent but leaving the doctors and nursesthat you have grown up with and learnt to trust, tomeet a new team, usually based in anotherhospital; can leave young LHM members and theirfamilies feeling nervous and unsure.Here we have tried to answer some of the mostcommonly asked questions.When will I be transferred to the adult hospital?Most young adults begin the transfer process oncethey reach 16, that does not mean that they need tomove over to the adult unit straight away. Someyoung people are happy to move straight awayothers would rather wait until they are nearer to 18when they have to move.Many of the cardiac units have a transferprocess - Transition Clinics. Consultants from boththe children’s and adult services meet the youngtransferring patient together, this can help withbuilding confidence that everyone knows abouteach child’s heart problem.Other units introduce their young patients to theirGUCH Nurse. This is a nurse who is very similar tothe liaison nurse. Their job will partly be to answerany questions about medical or lifestyle care and tooffer support to the patient and their family.The team have parallels with the same expertsin both children’s and adult services.Child Congenital TeamConsultant Congenital CardiologistConsultant Congenital Cardiac SurgeonCardiac Liaison SisterIntensive Cardiac Care TeamChildren’s Cardiac NursesChildren’s Cardiac Junior DoctorsEcho and ECG TechniciansWhich hospital will I be sent to?Each children’s hospital has a direct route to refereach patient to the adult congenital team linked tothe local children’s services. Many children’shospitals and adult teams work together meetingeach week to discuss patients. They are seen as aregion’s Congenital Heart Team. Most congenitalAdult Congenital TeamConsultant Congenital CardiologistConsultant Congenital Cardiac SurgeonGrown Up Congenital Heart NurseIntensive Cardiac Care TeamAdult Cardiac NursesAdult Cardiac Junior DoctorsEcho and ECG Techniciansheart surgery is done by the same surgeons thatoperate on children.Will my new doctor understand my heartoperation?Most of the adult congenital cardiac cardiologistshave been trained specifically in the care of youngpeople and adults with congenital heart problems.14Hello everyone,Matt Luck here, thought I would sharemy experience of medical transition toadult care with you.Now that I am 18 my care has beentransferred from Birmingham Children'sHospital to the Queen Elizabeth Hospital,with a Grown Up Congenital Heart Unit(GUCH). My new Cardiologist, Mr Clift,specialises in congenital heart conditionsand made me feel welcome as we chattedabout Hypoplastic Left Heart Syndrome.He knew all about my past medical historyand asked me how I was coping with dayto day living and if I had any concerns Iwanted to discuss. He explained to methat he would like me to have a number oftests, just so that he knew what was'normal' for me, these included cardiacMRI, 24hr tape and cardiac echo. I havereceived a copy of my ECG with advice tokeep it with me when I am out and about,just in case I am admitted to anotherhospital with chest pain. I also keep thenumber of the heart unit and nursespecialist in my phone.I will be seen in clinic once a year,which is the same as BCH unless mycondition changes. My medication -Warfarin and Lisinopril remains thesame. My transition to adult care hasbeen okay and I am positive about thefuture, I like my new Cardiologist andfeel confident with him.I hope you all have a good transition toadult services, I know that it will bedifferent for all of you, some of you willbe told when the transition will takeplace with little personal preparation(my experience) and others will have aphased transition with good preparationand forward planning.Good Luck!

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 15There are some adult cardiologists who treatpatients with heart problems that they haveacquired in later life but also offer care to patientswho were born with congenital heart problems. Thisis a gradually reducing service as the numbers ofpatients with congenital problems reachingadulthood has become greater so there is anational push to increase the specialised adultcongenital service.The doctors will have been sent a full record ofyour medical history and most of them will havemet with your paediatric cardiologist. As explainedabove you may attend joint Transition Clinics.They may ask you to explain what you havebeen through when you first meet them so that theygain a greater understanding of how you feel aboutyour condition and it’s treatments.The number of adult patients who have only halfa working heart makes up 10% of an adultcongenital cardiologist’s patients but they take up to50% of the cardiologist’s working time so patientswith a Fontan circulation are very, very important.Adult congenital cardiologists have been treatingpatients with a Fontan circulation for many years.Will my parents be allowed to be with me whenI go to see the doctor?p If you would like your parents to be with youwhen you visit the cardiologist they can.p If you would like at the appointment for them tobe present for only part of the visit that is also ok.p If you feel that you would like to attend theappointment without your parents then that is alsook.Your parents or guardians will probably havebeen with you for most of your visits to thechildren’s hospital so for a while you may still wantthem to be with you when you move to adult care.They have known your condition since you wereborn so talk to them about what treatments you hadas a child so that you can understand whathappened to you.When you see the adult cardiologist they willdirect all the questions about your care and howyou are feeling directly to you. If you don’t know theanswer but you think that your parents might thenask them to fill in any gaps.It is a really good idea to think about anyoutpatient appointments a couple of days beforeyou go. Write down any questions that you have sothat you don’t miss asking them during your visit.This is a good idea whilst you are still treated at thechildren’s hospital.If I need to stay on the ward in the adult hospitalwhat will be different from the children’shospital?The first and most noticeable difference will be thatthe other patients will be adults, no more cryingbabies, some of them might be the age of yourgrandparents. Actually this can be a great laughbecause they often try to look after a youngerpatient, to help them feel at home. An iPod can beuseful so that you can listen to your type of music.Family and friends can visit but the times mightbe restricted. It would be very unusual for a parentto be able to stay the night.If there is a doctors round where a treatmentplan is going to be discussed it is possible toorganise for another adult to be present if that iswhat the patient wants.Why do I need to move hospitals and changedoctors?The care of children's illnesses is organised atchildren’s hospitals. They become expert at dealingwith babies and young children as well as theirfamilies. They are used to caring for young adultsbut these days most surgery and admissions forcongenital services are done in a child’s first fiveyears of life so the beds are too small and thewards are filled with all ages. The privacy mostteenagers want is not there.Adult hospitals are made for adults. You can betall or short, you will fit into the bed.You are able to be independent taking a lead inyour own health care.It is easier to talk about adult issues such asalcohol and sex, getting a job and maintaining afamily.You are treated and cared for by a team who areused to adults with heart disease. They provide afresh pair of eyes to maximise your cardiac healthin adulthood.Useful Linkshttp://www.dh.gov.uk - has quite a fewdifferent resources including videosClick on ‘Health Care’, ‘Children andMaternity’ then ‘Transition from children’s toadult services’http://www.guch.org.uk/info/TRANSITION INFORMATION DAYS AT THE EVELINA CHILDREN'S HOSPITALTransition Information Days takeplace at the Evelina Children'sHospital twice a year, and areaimed at young people aged 15+ whoare about to start going through theTransition to Adult Congenital Cardiacservices.The day takes the form of a series ofworkshops and interactive sessions andthe young people are separated fromtheir parents to enable the workshops tobe tailored to their requirements and levelof understanding. The Day is run bysenior nursing staff from both thePaediatric and Adult units and sessionsare facilitated by the Cardiologists, aPsychologist, a Senior Play Specialistand a number of adult Congenitalpatients.For the young people, the emphasis ison empowerment, knowledge andconfidence building, and this is achievedby breaking the ice and playing games,before undertaking some fun role-playingactivities, as well as providing informationand guidance on important Issues suchas :What life as a "GUCH" will be like,and how the adult clinics & wardsdiffer from the paediatric ones.Knowing and understanding theirheart condition as well as whatmedication they take (soundselementary, doesn’t it, but we wereamazed at how many 15 and 16 yearolds didn't know this!).Understanding why alcohol, smokingand recreational drugs should beavoided but also how to "say no"without losing face amongst theirpeers.Leaving home for college or university(and remembering to attendoutpatient appointments).Learning to take responsibility andownership of their health in a positiveway.We try to emphasise what they CAN do,rather than what they CAN'T, and to givethem the tools to live life to the full, given therestrictions that their heart condition hasplaced on them.For parents, the workshops cover thesame information, but are aimed atreassuring them about the Transitionprocess and the care their child will receiveonce he or she has made the daunting leapacross to Adult services.The feedback from both young peopleand their parents who have attendedTransition Days has been really positive …"The day was different to what Iexpected. I expected it to be justtalking about moving to adultcongenital care and not asinteractive. At the beginning of theday I was nervous and shy but asthe day went on I got more andmore confident. It was interestingto meet other children with heartconditions because I haven't hadthe chance of meeting any otherchildren with heart conditionsbefore. Overall the day was veryinformative to me and my mum. Iwould recommend it to anyone!”For more information about futureTransition Information Days pleasecontact Jo Wilson on director@echoevelina.org.uk.Jo WilsonECHOBirmingham TransitionThe Birmingham Congenital CardiacService have just employed a TransitionNurse, Nichola Pope. Her role will be tosupport young people as they move fromthe Children’s Hospital to the QueenElizabeth Hospital site.As soon as she takes up her post we willinvite her to write a piece for thenewsletter.15

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 16Zipper ZoneJon gives an overview on some of the things he has beenworking on with our young members.Written byJon BrunskillYouth Development OfficerAlways start with a joke...Through the pitch-black night, the captain sees a light dead ahead on a collision course with his ship.He sends a light-signal to the approaching ship: "Change your course 10 degrees east."The light signals back: "No, you change your course 10 degrees west."Angry, the captain sends: "I'm a navy captain! Change your course, sir!""I'm a seaman, second class," comes the reply. "Change your course, sir."Now the captain is furious. "I'm a battleship! I'm not changing course!"There is one last reply. "I'm a lighthouse…Your call."16Now for the serious stuff...Together, we can make a difference forall children with half a heart, and for allof the children in the future.Please help us to help them.Dear parents,Recently you will have received a letter from meexplaining about a research project that LittleHearts Matter is undertaking. I know that youwould probably like some more information onwhy this project is taking place, who will benefit,and how you can help? I'd like to use this spaceto answer these questions, and explain howimportant it is that we have as many people aspossible taking part in this project.Why is this project being undertaken?In short, to help us identify exactly which issuesare important to the 10-18 age group and howthese young people feel about these issues.We all know that life can get tough for familieswith a child with a single ventricle heart condition.Many parents contact us after experiencingproblems with their child's school or teachers, orit could be that you are having troublecommunicating with your child's doctor at theconsultancy meetings. Life can be frustrating forthe young people too. At an age of naturalboundary pushing they have to be taught thattaking risks can have much more severeconsequences than with 'normal' children. Whenyou are a teenager, all you want to be is thesame as everybody else.The challenge that we all face is trying to gaina solid understanding of the young person'sheart condition, and how having it affects them.Only then can we provide the best services tohelp give the children the support and guidancethat they need and deserve.‘How I Feel’ is the research project that willaddress some of the most pertinent issuesaffecting the 10-18 age group. It will find outexactly how the children feel about day to dayissues. This questionnaire based study will askthe children to voice their feelings on seventopics:Hospital and MedicationFamily and FriendsSchoolFeelings and…stuffBig Kids (For teenagersaged 13 and above)Sports and ActivitiesDiet and FoodThis will not only give us a much betterunderstanding of the children's needs, it will giveus a quantified piece of evidence that can beused to influence medical and healthcareprofessionals. This piece of evidence will alsogive LHM a much louder voice when lobbying forchange on issues such as paying forprescriptions once the children reach adulthood.How did we create the questionnaire?Suzie and I have been working very closely withthe young people at various events over the lastfew years to engage with them on which issuesare important to them. Earlier this year, weestablished a Youth Council which has been veryvocal in identifying the needs of young peoplewith a single ventricle heart disease.We also sought input from the medicalprofessionals who work with these youngpeople, including a clinical psychologist. All ofthese inputs combined with years of anecdotalevidence have meant that we have been able tocreate a concise questionnaire addressing themost important issues which need to beaddressed as soon as possible.The questionnaire should take between 30and 60 minutes to complete.What is the video stage?Most questions in the questionnaire are tickboxes so that the data can be quantified andpresented as statistics. The participants maywish, however, to elaborate on a particular issuebeyond the constraints of the questions. Theywill be given the opportunity to do this in an'interview' scenario with a facilitator, who will gothrough the young person's questionnaire withthem to give them a chance to talk about theirspecific feelings on an issue. These feelings willbe transcribed and used in the final evaluation toadd weight and a human element to thestatistics. No names will be attributed to thequotes in the evaluation process. if you or yourchild wish, the footage will be destroyed as soonas it has been transcribed.The footage may be used when presentingthe results of the study. Explicit and writtenconsent from both you and your child will besought if this avenue is chosen.Who will benefit from this questionnaire?There will be both short term and long-termbenefits that will come from the outcomes of thisproject. Little Hearts Matter will be able to use theinformation gathered and immediately apply it toour service provision, giving tailor-made support

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 17to the needs that they have identified as themost important.This sort of evidence will also allow LHM toaccess funding to help pay for the new servicesthat will be necessary from the outcomes of thisproject.In the longer term, LHM hopes to use thisevidence to persuade governmental change onissues such as DLA, benefits, getting the mostout of the education system, and much more.This will pave the way for a brighter future fortomorrow’s babies being born with a singleventricle heart disorder.How can I help?Over the next few months you will be receiving aletter from me inviting your attendance at aresearch event. We will be running these all overthe country, and will send you a letter when weare close to your area. If you are unable to makethe event, but would like your child to participate,please get in touch so that we can try andarrange a session at a more convenientlocation.We currently have 150 young people aged10-18. We hope to talk to as many of theseyoung people as possible. The more people thatwe are able to talk to, the more weight our studywill hold.If you have any concerns about this study, orwould like to discuss this project further, pleasecontact me, Jon Brunskill or Suzie Hutchinsonon 0121 455 8982 by day or 07590 531153 bynight.Thank you,Jon BrunskillYouth Project Development Officer andYouth Research Project LeadZipper Get Together“I learnt a lot aboutmy heart and how itworks. Now I understandmy heart better.”The bestway togive ouryoungmembersthe servicethat they want isto ask them what isimportant to them.The Little Hearts MatterYouth Council told us that theywanted to understand their heartsbetter, in an easy way that theycan understand. They said thatdoctors often use long orcomplicated words, and thatthey feel stupid if they ask whatthey mean.“Swimming was myfavourite bit. It was weirdseeing so many other kidswith scars on theirchests.”are ready tostart to understandtheir condition, andtake some control over it.One of our young members,Matthew Flavell entered anational poetry competition andwe are very proud to report thathis poem was selected to bepublished in a book.The poem was inspired by thelast LHM activity weekend. Atwhich the children made claymonsters called ‘Guardits’ fortheir dens that they built tocreate a defense against thebeast of Bodmin Moor.Well done Matthew - what a starThe Beast of Bodmin Moor“I made loads ofnew friends withhearts just likemine.”I'm prowling on the grassymoor.My name's the beast ofBodmin Moor.I eat and sleep all day long,I never do any wrong.“I like being ableto come to thesedays withoutparents.”It was alsoimportant to theyoung people thatthey had a sessionwithout parents. Thisis a very important steptowards independence.These young peopleobviously feel that theyLittle Hearts Matterran a Zipper Get Together inSeptember for any youngmembers (and their brothers orsisters) aged between 10 and 18.Almost 30 young peopleattended, here are some of theircomments and some picturesfrom the day.Some Say I'm a pet cat,Imagine me with a rat!So when you walk on the moor,Think about the beast ofBodmin MoorMatthew Flavell17

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 18The ReviewEvery issue we feature a review of abook or website or film that ourmembers may find interesting.In this issue, Gill Cloke, hasreviewed www.healthtalkonline.orgWritten byGill ClokeHealthtalkonline is the website of the DIPExcharity, which aims to make available a rangeof patient’s perspectives of a particular conditionor illness through creating a database ofpersonal experience. Healthtalkonline hasbeen set up to let folk share in theseexperiences of health and illness, by watchingor listening to videos of interviews, readingabout people’s experiences and offering thechance to find out information aboutconditions, treatment choices and support.The information on Healthtalkonline is basedon detailed research into patient experiencesconducted by interviewers at the University ofOxford. The website was set up with thelaudable aim that offering personal stories ofhealth and illness would enable patients,families and healthcare professionals tobenefit from the experiences of others.The website is arranged by types ofcondition, and topics of common concern suchas living with disability, intensive care, and thesomewhat strangely named ‘living with dying’.There’s a section on heart disease containingan extensive area for ‘parents of children withcongenital heart disease’. This is arranged bysubject and includes such topics as: discovery(after birth and during pregnancy), preparingfor birth and labour, telling others, adapting tolife, feeding and medication, impact on family,talking to your child about their heart, death ofa child, surgery and cardiac catheterisation,child’s quality of life and development. Withinthese you’re then offered a range of interviewsof real people talking about how theirexperience and how this issue has affectedthem and their family, and how they’vehandled it; you can either download thetranscript or watch clips of the interviews.The interviewers have taken care too, tomake sure different viewpoints are covered;e.g. in the bit I looked into in detail aboutpreparing your child for surgery, besidestalking about how to prepare your child, they’dalso covered some people who’d chosen notto tell their child - and how this had worked inone case, but been very much regretted inanother. In the Resources and Informationsection they then have the cardiac teams anddiagnoses, with more information on theseand the treatments offered.This site is easy to use, easy to navigatearound, and they offer options alongside eachinterview to email it to a friend. You have toregister to use the forum. One small gripe isthe way they show the transcript of eachinterview alongside the film clip of it, and in ascreen just as big, so it actually serves todistract from watching the person talking. I’mnot sure why they do this - for people wantingto read rather than watch the interviews, theoptions for getting the transcript are veryobvious, so why put it here to distract as well?But this is a small niggle in a very valuablewebsite - totally gripping, in fact, I had to tearmyself away!Strongly recommended.18Getting Reliable Health Information from the World Wide WebIt’s so easy to go to the internet to look forinformation - we all do it at different times and fordifferent reasons. Many of the things we find willbe very useful information. However, sometimeswhen thinking about medical information, we cancome across misleading or unreliableinformation.To help members make the most of thebenefits the web can bring, we’ve had a look forsome information so you can distinguish atrustworthy health website from one which maynot be as useful as it first seems.The Health on the Net Foundation is a nongovernmentalorganisation, which works in thefield of health information ethics, and hasestablished a code of conduct and anaccreditation mark for health websites. Theysuggest considering the following points:1. Are the qualifications of authors of healthinformation given?2. Does the information complement and nottry to replace the doctor-patient relationship?3. Is there a privacy policy for personalinformation submitted by site visitors?4. Is the source(s) of the health informationprovided and are dates of publication / lastupdate on the pages? Is the person qualifiedto give this kind of information?5. Are justifications given for claims aboutthe benefits and disadvantages of products,treatments or services?6. Is the ownership of the site transparent,e.g. is there a contact address? Is the siteowned by a recognised body or institution?7. Is the source of funding of the site clear?8. Is advertising and editorial content clearlyseparated?They also recommend an overall approach ofvigilance, advising people not to trust promisesof miracle treatments and never to takeinformation found on the internet as medicaladvice.Please remember that there is a wealth ofmedical and lifestyle information on the LHMwebsite, and all our medical information hasbeen verified by the charity’s medical adviserDr Oliver Stümper, Consultant PaediatricCardiologist. If you ever want to discussinformation you find on the internet, please don’thesitate to contact us, or to discuss it with yourchild’s medical team. We don’t want todiscourage anybody from using any informationsource they find helpful; we just want to makesure you are getting good information. Happysurfing!

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 19NoticeboardPlease Tell UsLots of you are having a go at at Dress Up,Dress Down or Dress Silly, Walkaround UKand many other things, please do let us knowwhat you are up to, especially if you aretaking part in one of the fundraising initiativeseither from the website or from the FundraisingPack you received earlier in the year.I would love to get involved in all that youare doing.If you are planning a fundraiser you thinkmay be of interest to others or would likeothers to get involved, let me know and wewill publicise it on the website.Thanks as always,KevVYour NewsletterThank you so much to everyone who has contributed to thisnewsletter - it has been wonderful to receive all your stories andphotos and ideas.This is a bumper 20 page issue. The next issue is expected to besent out at the end of January 2010.If you would like to send your ideas and stories/photos for the nextedition please send them to Deb - deb@lhm.org.uk by the end ofthe year.Also if there is something you would like to see in the newsletter dolet us know.We very much look forward to hearing from you.VVInspirational Fundraiserof the MonthVDIARY DATESLights of Love - Switch OnSunday 6th December 2009West MidlandsTo confirm attendance and for more details pleasecontact us - 0121 455 8982; info@lhm.org.ukLHM Open Day & AGMSaturday 13th March 2010Bretby Conference Centre, Burton Upon TrentVLHM PublicationsLittle Hearts Matter now has the following publications andpacks available free of charge to members - to get your copyjust call the office on 0121 455 8982 or emailinfo@lhm.org.uk or visit www.lhm.org.uk.• Antenatal Information Booklet• Preparation for Hospital Booklet• Preparation for Hospital Pack - to loan for a period of3 weeks.• Benefits - a guide for parents• Feeding at Home - a guide for parents.• Early Years and Infant School Education Booklet• Junior School Education Booklet• Dental Care• Fundraising PackI get inspired almost everyweek when some of you stepforward and go that extramile to give something backto your charity, and it isyour charity.One such person is MandyPearce who put to one side her fear ofheights, boarded a little aircraft, climbed to5000 feet and jumped out!!!Well done Mandy, not only for beating yourfear but really going for it for the children.Mandy was our first inspirational Fundraiser ofthe Month. There have been lots more since.KevOn Your Marks for Little HeartsSunday 28th March 2010Mote Park, MaidstoneSunday 3rd October 2010Shugborough Hall, Staffordshire19

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 20Little Hearts Matter11 Greenfield Crescent, EdgbastonBirmingham, B15 3AUTelephone: 0121 455 8982;Email: info@lhm.org.ukOver To YouWatchminder 2 Training and Reminder SystemFran contacted us with a great idea - a watch which reminds children to do things such astake medication.“It has been an amazing boost for Dom not to have to rely on an adult to rememberwhen to take his medicine at school, even though he still has to go to the office tocollect it as he can't keep it on him. The watchminder can be set to vibrate discreetly atthe set time and shows a message saying MEDS so he knows what to do...we havealso set it to help him get organised with other things and it is working a treat.We have also found that preparing a week ahead and putting all the boys meds intoseparate labelled containers, for each day, saves time and hassle and means that if Iam not there my husband can get it right without worrying! Eventually they will beresponsible for doing it themselves...I love all this stuff, it just makes things more possible! Anyone with more ideas for us?We would love to know how the older kids manage everything!It is hard to gradually let your children go, but that is our job as parents isn't it... letthem go so they can grow.. ..”Fran bought hers from Relax UK - www.relax-uk.com/product.asp?id=212price £59You can also find more details on www.watchminder.com/This page is just for you – the members ofLHM. We want you to tell us what you’ve beenup to! Send us your pictures or stories –achievements, things that have made youproud – however big or small. If your child hasswum a length of the baths, conquered thebouncy castle, or gone off to their first day atschool or nursery, we want to know about it!We also want to include any of your ideas tomake life easier or recipes for foods to temptthe children! This is YOUR page – if there’ssomething you’d like to see – let us know.Email your pictures, stories, recipes and ideasto info@lhm.org.ukVV• ABOVE LEFT: Michael Smith (5) doing the egg and spoon race.• ABOVE: AdriannaTupaz, age 9 months and eager to keep up with hersister.• ABOVE RIGHT: Samuel Robinson (3) meeting The Wiggles at the NIA.• RIGHT: Matthew Luck (18) tearing up his L plates after passing his drivingtest.• BELOW RIGHT: Lucy Pearson (9), doing her favourite thing in theworld... reading.• BELOW: Cora Banyard (3) riding her first bike - what a grown up girl!• BELOW LEFT: Maks Szatkowski born on the 24th June 2009.• LEFT: Arlo Kent-Rose (3) proud owner of a scooter!20