Little Hearts Matter Newsletter No 2 2017 LHM youngsters enjoy a summer adventure
Find out more on pages 24 - 25 In this issue... Feeding babies Research Hospital transition Pages 4 - 5 Pages 12 Pages 14 - 15
Supporting every step of the half a heart journey Charity news
Written by: Suzie Hutchinson
Little Hearts Matter is a growing charity that reaches out to more and more families affected by a diagnosis of a single ventricle heart condition every year. The development of social media as a communication tool has allowed us to broaden our reach but also for us to offer support by linking families to each other.
We love to see the 'Feel Good Friday' posts and the questions We were delighted that our Fontan booklet was awarded a raised and answered by parents but we especially like to see Highly Commended by the British Medical Association (BMA) the support that parents give to each other when times are at their Patient Award Ceremony. The team, led by Deb, tough. Thank you all for your great interaction. our Information Administrator, work really hard to make our publications as accessible as possible so it is so nice when We have been receiving a great many parent referrals from external agencies acknowledge that we do. clinicians and specialist nurses around the country. This has meant that a great many families are joining the charity later in I have been out visiting medical teams in different parts of the their journey. They are often looking for information on DLA, country: Newcastle, Leicester, Liverpool, the QE in Birmingham education support and teenage lifestyle information. We will and Great Ormond Street. It is always good to catch up with always try and be here to help families seeking our support. the teams in different hospitals and to link with a number of Welcome to all our new families. their research projects. There is a focus on research later in this newsletter. You will all be delighted to hear that children Personally I have had a really busy LHM summer. and adults with a Fontan circulation are of great interest to As well as offering our normal one-to-one information and the medical profession. There are lots of new studies being support services I have been filling in on some of the youth conducted all around the country into not only medical care, service projects. This has allowed me to join with our amazing but also lifestyle issues that affect patients with single ventricle young members at a couple of our summer youth events. heart conditions. The activity weekend was brilliant, the young members We have organised a new event for families remembering took part in everything and shared their thoughts, swapped loved ones by holding a Memorial Walk around the National addresses and generally had a great, if exhausting time. Memorial Arboretum; there are some lovely photos featured The feedback from the event was excellent with one of the later in the newsletter. young members saying it was the best event yet. Some of My other main focus over the summer has been to listen to our attendees have more than just their heart challenge but members and other families of heart children express their amazed themselves by achieving more than they ever thought concerns about the future of their health services and to report would be possible. those concerns and thoughts. There are more details about the Twycross Zoo saw fewer young people but still provided an public and patient voice in the article on the next page. opportunity for new friendships as well as a chance to get up Finally I would like to thank the team in the office and you, our close with the animals. members for completing your permission to contact forms. I am delighted to be able to introduce Lexie, our new Youth Major changes to the collection and use of personal data have Leader. She will be picking up the youth service mantle and required a change in the way that LHM store the information working to build better youth communication. See her news that we hold on families and the way we contact families in section later in the newsletter. the future. It has been a huge project, which we have not yet completed, as we are still looking for a new and affordable Deb, Isabel and I have been working to update some of our Customer Relationship Management (CRM) System. Members information booklets but also we are able to say that we have can be assured that their information is stored securely and two new publications with the printers now. Richard Kirk, that LHM would never pass their information on to any other Consultant Transplant Cardiologist, has written a wonderful organisation without personal agreement. From now on booklet on Heart Transplantation for patients with a single newsletters and other communications about our events will ventricle heart. We are so grateful to him for all the time and only be sent out in your preferred contact style. Some people effort he has put into this fantastic publication. The other will receive a hard copy of the newsletter, others will get an booklet we will have ready is the MCT diet book. It has been email copy. updated and lots of new recipes have been included. It will be a great resource for families. Remember we are here if we can help in any way.
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This is a great booklet - well thought out and very likely to “be of value to patients and parents. Well done.
Heart Federation“ but has worked with other charities to Making sure LHM members' create the Congenital and Children's Heart Forum (CCHF). This group of national and larger local charities has been voices are heard created to work together to discuss and speak out on issues that affect patients and families. When concerns Over the last few years the need to make sure that LHM about a service provision have been raised the CCHF members' concerns about their health, education and social contact agencies involved in ensuring that medical care is of care have been heard by the people making changes to a high standard to ensure that the needs of patients remain services has been essential. at the centre of medical provision. Health Education The review of the congenital heart services and Changes to the statutory obligations of schools to provide reorganisation of service from antenatal diagnosis to Healthcare Plans for all children with long-term medical adulthood has been torturously long and as we go to conditions has been slow on the uptake. Research done by print we still do no know what the NHS England Board the Health Conditions in Schools Alliance, of which LHM will decide about the future of a number of the hospitals is a member, has found that only 10% of schools comply currently providing a surgical service. Decisions will be with the Healthcare Plan needs of children. The group held made at the NHS England Board meeting on the 30th a lobby day in Parliament. For more information follow the October in line with the National Standards of Care, agreed link to the Alliance's website, medicalconditionsatschool. last year. The LHM team have worked hard to listen to the org.uk/ concerns of members in the units that might be affected and have also talked to other charities and the health Benefits providers in each unit about their concerns about change. Almost daily the LHM team receive a call or an email Suzie, as one of three Patient and Public Voices (PPV) on about a DLA or PIP question. Families are struggling to get the Clinical Reference Group, (a group of doctors, nurses through the application process. LHM as part of the CCHF, and commissioners who work to review units' work in line described above, have been working with the Department with the standards, propose new expert treatments and of Work and Pensions to improve assessors' understanding services, review concerns raised by clinical teams and of congenital heart disease. Unfortunately although there report everything to NHS England), has been able to raise is now more information available to them it is not at all concerns about treatment and care. accurate and there are many omissions. Suzie will be working with Sam from ECHO and Hazel from Heartline Her PPV role has also allowed her to take concerns about to improve the information and go back to the DWP to get hospital change directly to the review team. changes made in the assessors' pack. The charity has worked to raise members' awareness of how We are always keen to hear from members about any issues they can submit their individual concerns about change or that they think LHM should become involved in. We see contribute to the consultation on changes proposed. ourselves as advocates for our members and will work as Little Hearts Matter is no longer a member of the Children's hard as we can to raise concerns within arenas for change.
www.lhm.org.uk 3 Feeding babies with CHD Written by: Amy Calvert, Highly Specialised Paediatric Cardiology Dietitian, The Royal Brompton Hospital
Infants that have a heart condition often have increased energy requirements and feeding difficulties are
very common. They tend to spend more energy on feeding and often take less milk overall. This means that weight gain is often slower than expected and feed times can become difficult and stressful. Whilst waiting for surgery, there are things that can be done to help promote weight gain, make
feeding easier for the baby, develop feeding skills and keep feed times positive and enjoyable.
Regular monitoring Seeming uncoordinated during feeds. Babies with congenital heart disease (CHD) are often History of chest infections/chronic cough. advised to have their weight checked frequently to ensure that they consistently gain sufficient weight. Feeding In order to make feeding more comfortable and safer patterns should also be monitored for any changes so that for the baby, changes may be recommended such as early support can be provided if feeding becomes more changing the position that a baby is fed in, the teat that is effortful. Changes to be aware of include: used, the thickness of the milk or the pace at which the baby is fed. A feeding tube may also be recommended. Feeds taking longer than usual. Particularly if they are taking more than 30 minutes. Tube feeding Taking reduced volumes. Tube feeding is often required whilst helping babies grow Having to feed more frequently, little and often. for heart surgery. If a baby can't manage to take enough milk orally (through their mouth) to meet their higher calorie Becoming more sleepy, often falling asleep during requirements, if feeding is too hard work or if weight gain feeds/needing to be roused for feeds. remains poor despite being given high-calorie formulas, milk Increased breathlessness and sweatiness with can be given through a nasogastric tube (NGT). This tube is feeding, needing to take regular breaks. passed through the nose and into the stomach and it allows milk to be given to the baby without any energy being spent Specialist milks on feeding. This can be used to top up whatever the child manages to take orally, or it may be used to give the baby A dietitian may recommend a special high-calorie formula, a break from oral feeding if they are working very hard. If it in order to reduce the amount of milk that a baby with CHD is felt that a baby will need to be tube fed for an extended needs to take to meet their increased calorie requirements. period, a Percutaneous Endoscopic Gastrostomy (PEG) If breast milk is available, this may be fortified by the may be recommended. This is a tube which goes directly dietitian to increase the calorie and protein content. to the stomach and again helps to give the baby the feed Support from a speech and language needed without them using up energy. If an infant is working too hard with their breathing to therapist feed orally and they are fully tube fed, a dummy or finger A speech and language therapist should assess a baby could be offered for the baby to suck on to provide oral if they have any physical feeding difficulties. These may stimulation, to help maintain the skills necessary for feeding include the following: after surgery. They may also manage dips of milk on the dummy. Coughing, choking or gagging during feeds. Losing lots of milk out of the side of the mouth Managing gastrointestinal issues during feeds. Infants with a heart condition may have problems with feed Having a wet sounding voice after feeds. tolerance. Sometimes feed may not be absorbed properly, gastric emptying may be slower, babies may suffer with Looking startled during feeds. frequent vomiting and reflux and they may not be able to Eyes watering during feeds. tolerate large volumes in their stomach.
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A dietitian may recommend a special formula that may foods such as meat, fish, eggs, beans, pulses and dairy be more easily digested and absorbed and smaller more foods should be included in the diet. Nutritious puddings frequent feeds may work better overall. Medication may can be given after meals such as yoghurt, custard, cream also be recommended by a doctor to manage symptoms of or ice cream with fruit and rice pudding. High-calorie reflux and to assist with slow gastric emptying. Positioning snacks could be offered between meals such as cheese may also help alleviate symptoms of reflux and reduce pieces, rice cakes or crackers with butter or nut butter and vomiting after feeds, keeping the baby upright after feeds. breadsticks with a dip such as hummous. If a baby is struggling to tolerate tube feeds being given into You may find that your child prefers to feed themselves their stomach, feed administration may be slowed down and have control at meal times and so this should be by using a pump or the feed may be given further down encouraged as much as possible, with no force feeding. straight into the small intestine rather than the stomach. They may also be sensitive to texture and may prefer smooth purées to lumpy and mashed textures. Finger Weaning support foods will provide the opportunity to practise with more Early weaning may be started from 17 weeks, depending solid textures alongside smooth purées. on the infant's development. Developmental signs of readiness for weaning include independent head control, Relaxed meal times bringing hands and toys to the mouth and showing an When possible, parents and sibling/peers should eat at interest in food when others are eating around them. There the same time as the baby, and meal times should always are restrictions on foods that should be offered before six be relaxed and sociable times for the whole family. There months however, and so this should be discussed with a should never be any pressure on the baby to eat or drink. health professional. This can be difficult if there is a big focus on weight gain Messy play with smooth purées is a good way of before surgery, which can cause meal times and feed introducing solids initially, encouraging the baby to touch times to become stressful for parents and the baby. This and play with the purée and bring it to their mouth with their can contribute to oral aversion, as the baby begins to own hands. Once they are happy to take small tastes from associate eating and drinking with negative experiences their own fingers, spoons can then be introduced alongside and can cause long-term feeding problems. this. Finger foods may be introduced at around six months, Feeding your baby should be an enjoyable experience for starting with bite and dissolve textures such as baby crisps both you and the child and this is the key to preventing or wafer biscuits and soft mashable foods such as very soft long-term feeding problems. If you seek advice early on if fruit pieces, or well-cooked vegetable sticks. changes or difficulties are noted or you become concerned Food can be fortified to increase the calorie content with about weight gain, you will receive the support necessary things such as butter, oil, cream, grated or soft cheese to help take the stress out of feeding, to promote weight and nut butter. Protein is also important for growth and so gain and promote ongoing development of feeding skills.
www.lhm.org.uk 5 Enzo's journey
Written by: Claire Weston, Enzo's mum
My daughter was born with no nasal passage so when I fell pregnant with baby number two (Enzo) they wanted me to have a special fetal scan at 20 weeks. So me, my husband and mum went to the scan. I remember lying there, whilst the doctor took a long time to do the scan, he was a lovely, happy, talkative bloke. Suddenly he looked at the screen and I heard him mumble "Oh no" and then he said "Excuse me a minute!"
Next thing I remember, he came back into the room with He went on for the next few years to do well, the odd my mum and a nurse and asked me to sit up. "I believe hospital stay for colds but nothing serious. He attended your child has Hypoplastic Left Heart Syndrome". Scott a lovely nursery. It's like we forgot he needed another (my husband) and I just stared at each other and said surgery as we were so busy enjoying life as a family. Then "What's that?" The doctor kept trying to explain but it one day in December, a few weeks before Christmas my really wasn't registering. I just remember my mum crying, phone rang and it was the hospital. "Hi is this Enzo's so I realised it must not have been the best of news! mum?" I gulped and responded "Yes". They added "OK, we have a surgery date for you. It's 2nd January." I They referred me to Great Ormond Street Hospital where couldn't speak. I think they knew that so said they would they did further tests and confirmed that our son had call me back! I went upstairs and Enzo was playing in his Hypoplastic Left Heart Syndrome (HLHS). They talked us room. I picked him up and held him. I don't think I've ever through the condition and then gave us three options - I felt so scared and lost. Again though I knew we had to be felt sick! They were talking about options, percentages, strong, how can I tell Enzo he needs to be strong if I'm open heart surgeries, hospital stays. I remember thinking being weak? That's not how it goes! "What's going on!" I think it's safe to say I didn't sleep properly for days. I was so confused and thought to myself So we went up to London on New Year's Eve to get why me? What have I done wrong? I blamed myself until everything prepared. I remember lying beside him on I had proper knowledge and spoke to other parents. I still the ward listening to the fireworks. I got up, went to feel so grateful to Little Hearts Matter who put me through the window and thought next year Enzo can watch the to a lovely mum. We prepared ourselves but were ready fireworks himself. Still to this day I feel emotional when I to fight for our boy. Enzo was born on 7th September see fireworks. They remind me of a dark place I was once weighing 7lb. We didn't get to hold him when he was born at hidden inside me. I was just crying at the window. as he was rushed off straight away for surgery. He was a Enzo's operation was rescheduled until the 3rd due to an blue baby...I won't ever forget this. The room was full of emergency and the night before I was telling him stories of doctors, doctors wanting my boy to survive and they all the hospital as we walked around. The morning came and worked hard to make sure he did! nurses came in to tell me they were ready for him. I knew The next thing I remember is an ambulance crew from he needed it and I knew it was the best thing, but part of CATS around Enzo getting ready to take him to London me wanted to run with him, hug him and just come home! and nurses telling me I couldn't go yet as I had just had a Me and Scott took him down and we watched our boy baby so I discharged myself, went home to have a shower aged four drift off into sleep and I could see fear in his and went up to London to be there with Enzo! eyes as he lay there with the mask over his face. It broke At two days old he had his first open heart surgery and me and Scott! Even the nurse with us was in tears. We left he did so amazingly well. It was hard to see him like this him in the care of the surgeons then just walked around but he was putting up a fight so that kept us going! We for hours! The phone rang three hours in to let us know he was doing OK. Then again around three - four hours later took Enzo home around six weeks old and he started to to say that he was out of theatre...he was alive! become unwell at around two months. He wasn't gaining weight and was always so floppy and grey-tinged so We had to wait an hour before we could go up and see doctors put his next operation forward and he had it at him! Oh I can't even describe what I saw. My son wrapped just under four months old... Well after this he thrived in tubes...gasping for a drink but not allowed. I just held and became quite a little chunk! He walked before his his hand and cried. I do feel guilty for that, but I was also first birthday and I won't ever forget the first time he said showing Enzo that he's not alone and not the only one mum...moooom, mom, mum! who was scared.
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Days passed and he just amazed us. He was doing this... some dark, horrible days but the good days have definitely he was winning the battle! And he won! outweighed the bad and I see Enzo smiling, playing with his friends and I know it was all worth it! No regrets. I can't There were a few complications with recovery which did thank the hospital enough; the cardiac team, the nurses require an operation, and his lungs took much longer to who spoke to me like friends, my husband for standing drain than expected, but he was OK, we got to take Enzo by us, my entire family and close friends, but also I can't home 27 days after surgery. He had a bed downstairs as thank Little Hearts Matter enough too. They were only he couldn't walk and it took him a week or two to find the a phone call away and like I said before, they put me in strength and courage to walk, bless him, but he did in his touch with a mum who might just have saved my sanity own time. through this whole ordeal. Enzo is now nine years old and doing extremely well in Enzo is here and he's doing great and we've just booked a school, top of his class his teacher tells me. He's happy summer holiday, life is good! It can be messy at times but and healthy. He makes me soooo proud!! Yes, we had it's all about learning to dance in the rain.
www.lhm.org.uk 7 Fundraising
Written by: Ian Carr
Hello and welcome to the latest news from Little Hearts Matter fundraising team. We've had an amazing few months which has seen so many fundraisers doing incredible things up and down the country - all in aid of Little Hearts Matter. We'd love to feature every single one of them, but here are just a few highlights.
Your fundraising Colin goes the extra mile for Little Hearts Matter LHM stalwart and grandfather to Thomas, Colin Barrett took on the Birmingham Half Marathon in October. Colin, at the age of 73, not only took on the 13.1 miles, he also raised over £5,000 for LHM. Colin when asked about his age, stated:
I know I am in my 70s, but I don't see why “that should hold me back. My increase in exercise has completely changed everything for the better. I feel younger and fitter now Colin (pictured centre) and than ever. Raising money for LHM after how his Barmy Army! they've supported Thomas was a pleasure
to give something back. If you want to take on a half marathon, get in touch with LHM - [email protected] or 0121 455 8982.
Ian's nursery have a grand “time at Fun Day!
Somerset Nursery in Parkgrove combined having a It really did work, before we knew it the three and four year great time with fundraising in September as they staged olds in nursery were curious and asking Ian questions and a family fun day to raise funds for Little Hearts Matter. slowly he became much more confident, and was really Siobhan Gillies, nursery manager, explains, "Ian joined excited at a fun day in his honour! Our family fun day in our our nursery about a year ago and during that time we nursery included a bouncy castle, face painting, bake sale have learned about his Hypoplastic Left Heart Syndrome. and raffle. We had an outstanding attendance with around We found him to be quite shy when talking about it, so 90% of our registered children attending the event as well wanted to stage an event to help half a heart children as members of the public. which would not only raise awareness, but help Ian to feel Everyone is so fond of Ian, that they couldn't turn down less self-conscious about his scars and more comfortable the opportunity to raise funds! Ian along with other children talking to us and his friends about it. in his group make weekly visits to our local adult
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Handmade Hearts Thanks so much to everyone who took part in Handmade Hearts. Packs were sent out throughout October and participants were asked to bake, make, sew and sell their items in aid of LHM.
Ride 100 We had our best year yet for Ride 100. The iconic race took place in London in July. With our 11 riders raising over £10,000 it really was a year to remember!
We have places for next year's ride, so if it's on your bucket list, make sure you tick if off for LHM. www.lhm.org.uk/ride100 is where you'll find more details to register. Keep on running We've had loads of runners this year pound the pavements and raise thousands for LHM. The Great North Run saw 11 runners take on the iconic half marathon, Simon Masters, Josh Hope- Collins, Geraldine Lange and Mark Lange, Julian Rowlands, Steve Bellamy, Nik Whitfield, Stephen Lee, Lyndsey Glynn, Robert Arnold. In October 17 runners took on either the Great Birmingham Run or Birmingham International Marathon, Colin Barrett, Nick Allen, Cheryl & Ade Bishop, Joe Coley, Heather Thorp, Dawn Jones, Raj, Ray and Tom (University of Birmingham Pharmacy Society) ran the half marathon. Alan Birch, Paul Yuile, Sarah Yuile, Jen Evans, Craig Greenway, Robert White, Marie Titley and Mark Hooks ran the marathon. In total they raised nearly £16,000 on these events alone. Thanks so much guys!
If you want to run the Great North Run for LHM or run for us at any upcoming runs, please get in touch!
Call us on 0121 455 8982 or email info@ lhm.org.uk
care home and they held a coffee morning to contribute to our fundraising and the nursery director made a large donation on behalf of the nursery, so we were able to donate £1000 to LHM!
It was a pleasure staging the event and “ donating to such a great cause. “ www.lhm.org.uk 9 Memorial walk
Written by: Suzie Hutchinson
Saturday 14th October saw 120 Little Hearts Matter members and friends meet together to walk around the National Memorial Arboretum in memory of their children. The day was bright and the Memorial Park was beautiful.
Guides from the Arboretum took round the walkers pointing out lots of special memorials on the way. We all stopped and planted bulbs around the LHM bench and tree with promises that we would go back and take photos in the spring when the daffodils come up. The morning ended with everyone enjoying soup, rolls and great cake and a chance to chat with each other whilst the children made glittery hearts which we have put up in the office. We would like to thank the many bereaved members and their friends and family for joining us on our inaugural walk and to the many of you who decided to raise money in memory of your children. Here are some of the photos capturing the day.
Well Marcus' dragonfly girls have done the “memorial walk. We had a lovely day at the Arboretum. Thank you so much girls you are truly amazing friends you made today really special, thanks to Suzie and the LHM team for organising a wonderful day.
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As a family we are grieving every day and this event was nice“ because we did something in Lil's memory. “ because people no longer know how to talk to you. Our Missing Peace They are scared of saying the wrong thing, they don't LHM have recently been introduced to 'Our Missing know if you want to talk about your child, they are Peace', a campaign set up to break the silence uncomfortable with your grief. surrounding child loss by mum Nicole Bowles, below After two years of researching I created a badge which she tell us more. could help unify and identify those who are grieving for their child. A way of allowing people to talk about child loss more openly. A way of people being able to recognise that we want to talk about ALL of our children. A way of bringing this amazing community, that we have now found ourselves part of, closer and more unified. I created a pin badge which is a symbol that doesn't isolate, define or exclude. A symbol 13th November 2012 was the day our worst that can help signpost people nightmares came true. Our son, Ben, died to the amazing charities due to a freak accident and our world was and organisations that are left spinning. out there already supporting bereaved families. A symbol Over the past five years that can help educate those our family has been who haven't lost and teach them supported by amazing how to approach those who have. charities but what came to light was that accessing This badge creates a positive, constructive help when surrounded conversation and it allows people to know that it's OK by grief was incredibly to talk about our children, it's OK to ask about them difficult. Grief is all and it's OK to say their name. consuming and makes It is a way of showing the world that we are not basic tasks incredibly ashamed of our loss and it's OK to talk. difficult. To find out more please visit The death of a child also creates a deafening silence www.ourmissingpeace.org
www.lhm.org.uk 11 Research
Written by: Leg pains - Dr David Crossland and Suzie Hutchinson Priorities for research - Nigel Drury
Little Hearts Matter is involved in a number of research projects looking at the diagnosis, treatment and lifestyle issues for children and adults with a single ventricle heart condition. Below are two research projects that Little Hearts Matter are involved with alongside David Crossland at the Freeman Hospital and Nigel Drury, Congenital Heart Research group, Birmingham
Unexplained leg pains – you are not alone! LHM will be taking this forward and hope to bring you more information in the near future. Last year’s survey on Leg Pains attracted a strong response both by members of LHM and non-members across the country, giving a clear message that this is Would you like to help set priorities an important and distressing symptom for patients and for research in single ventricle heart their carers. Analysis of the survey responses indicated conditions? that leg pains are significantly more common in children with congenital heart conditions when compared to other In conjunction with Little Hearts Matter, the Congenital children (in this case their siblings). Over 93% of the 220 Heart Research group in Birmingham are conducting responders reported leg pains with 44% occurring on a study to understand what research questions are a daily basis. The leg pains clearly caused a high level most important for patients with a single ventricle. The of distress with many respondents describing crying first stage is an online survey of patients, their parents, and difficulty settling. A typical description was ‘She is family members, doctors, nurses and anyone else with inconsolable at night time. It's like she's panicking, she an interest in single ventricle heart conditions, with just can't keep still and settle to sleep.’ one question: Interestingly, the leg pains shared many common features ‘What questions would you like to see answered with what we know as “growing pains”. They typically by future research for patients who have a single happened at night, often after a busy day and came and ventricle heart condition?’ went unpredictably. Most of you used massage or Calpol Each participant is asked to give up to three questions. to treat symptoms. Some other things that helped were Responses will then be classified as ‘already answered’ resting, elevating the legs and warming the legs up. The or ‘unanswered’ and the latter grouped into topics. good news is that “growing pains”, which actually have In the second stage, participants will be asked to rank no relationship to growth spurts, do not signal any serious the ‘unanswered’ topics in order of priority for research problem and will eventually go away. However, it is also and for each of their three top-ranking topics, they will very important to remember that occasionally leg pains may be asked to rank individual questions. have more serious causes and if symptoms persist, involve joints, cause limping or your child is physically unwell or you The third stage will be a one-day workshop to be held are simply concerned you should talk to your doctor. in Birmingham early next year where parents, families, healthcare professionals and other interested parties The fact that these leg pains are more common in will discuss the findings to produce a list of the highest congenital heart patients needs further investigation. It priority topics and questions. The results of this study is clear some of you were worried enough to mention will help researchers to prioritise their efforts to improve these symptoms to your doctors who did not always have the lives of those with a single ventricle heart condition a good explanation. Further studies will be needed to and their families. understand what the causes may be and whether there are other treatments that may work. This survey is a great We would really value your input example of how patients can identify problems that the to this study – if you’d like to medical team aren’t always aware of and help direct future take part, please follow this link: research. It is also reassuring for many of you to know that https://bistc.redcap.bham.ac.uk/ you are not the only one suffering from a symptom that surveys/?s=KKAXWMF7FK is not understood by doctors, as one respondent said, ‘I Or scan the QR code using your would certainly have liked some more information about it smartphone. as at the time we thought it was just him’.
12 0121 455 8982 Corporate support
Written by: Ian Carr
It's been great for me to see some LHM supporters get in touch and suggest their work as someone who can help LHM and you'll see below those that have offered their support. I'd love to hear from you if you can help. It reallys does make a huge difference to a small charity like ours!
LHM! We're so grateful to Jo and Ben as it makes such a Open the Doors huge difference to the children and families we support. LHM is continuing to try and connect with businesses and organisations that might be able to help Little Hearts Matter through charity partnerships. We're asking all Mortgage Bureau members to get in touch with us with any potential Mortgage Bureau continue to be incredible supporters of partnerships. Most businesses have money set aside for Little Hearts Matter and Jamie, Mark and the team have charitable donations, so have you thought about Little raised more funds for LHM in 2017. Treks up Snowdon, Hearts Matter getting some of that money where you auctions, raffles, race nights and alcohol-free months are work? Please get in touch with me with any ideas you just some of the ways they've raised over £10,000 this have as to how LHM and your business can work together year. Thank you so much to everyone at the Mortgage - [email protected] Bureau. You're amazing! Lily and Me Simian Risk Management We're delighted to announce a new corporate partnership with Simian Risk Management. The company who specialise in training for scaffolding work are based in Warrington and recently announced LHM would be its Charity of the Year. Annaleis Fraser, an LHM member, said, "we're excited about working with LHM and we've got loads of ideas for how to raise as much money as possible, including a 'fine' system for every time a phone goes off during our training sessions, which guarantees lots of pounds! We'd like to welcome everyone at Simian and look forward to the year ahead.
Joanne and Ben Haywood, parents of half a heart warrior Kavanagh & Co Grace, own an online clothes store, Lily and Me Clothing. Another new partner Recently, they asked their customers if they wanted to add is Kavanagh & Co, a donation to LHM on their purchase. Halesowen. The letting agency has offered to Jo explains: donate £5 for every letting they secure this year as well as some We just wanted to give something back to fundraising initiatives. a“ charity that's been a huge support to our Tom Kavanagh, said, "my son, Sean and his whole family. We were amazed by partner, Lauren recently the generosity of people who often went gave birth to my first grand-daughter Poppy. Sadly Poppy over the £2 suggested amount. passed away, but LHM were fantastic and have offered a support network that we didn't know existed. We at Kavanagh's just wanted to thank the charity and do our bit by giving back." LHM welcome Kavanagh & Co aboard The upshot is that Lily and Me recently donated“ £1,000 to and look forward to working with them. www.lhm.org.uk 13 A guide to adult cardiac care Written by: The Somerville Foundation with kind permission to reproduce.
Growing up can be an exciting time, with many changes and opportunities; a first job, going to university, new friends and new relationships. It will also mean that at some point, when you are between the ages of 16 and 18 years, you will transfer from the children's hospital services where you have been seen for your heart condition until now, to adult hospital services. At this time you will be encouraged to take control of your own health and start to make decisions for yourself in relation to the treatment and care you receive. This process is called 'transition'.
Words you will now hear frequently are GUCH, meaning Seeing the doctor Grown Up Congenital Heart and ACHD, meaning Adult with Congenital Heart Disease. Both are used as abbreviations Even the most confident of people can come away from for adults born with a heart condition. seeing the doctor having forgotten to ask a question. An idea could be to write down the questions that you want First contact with adult services to ask to bring to the consultation. If you don't understand Everyone growing up with congenital heart disease what you have been told at any time, say so and ask them should be seen by an expert from a specialist centre at to explain it again. You could suggest they draw a diagram least once and receive a written care plan. A care plan is to show what they mean. a document that sets out the monitoring and treatments You could also write down the answer to refer to it when you that you will need in the future. It will be written following a leave. Sometimes you may feel more comfortable having full assessment of your condition by your new consultant someone with you when you see the doctor. However, it is (specialist doctor). You are likely to be asked about your also important that you get the opportunity to speak with medical history and any problems you may have. You may the doctor alone as both you and they may have questions well be given a physical examination as well as tests such that are very personal. as an X-ray, ECG and/or Echocardiogram (ECHO). Don't be afraid of asking questions about lifestyle issues, Some hospitals have an actual transition service already set e.g. piercings, exercise, alcohol, sex, recreational drugs, as up, where a paediatric consultant will see you together with you may need to know the effects some of them may have a GUCH consultant or a GUCH nurse when the hand-over on your health. of support begins. Keeping your appointments Ongoing visits to adult services It is very important that you attend your appointments, You will most likely be supported by a team of doctors in which could be every three to six months, yearly or longer. If the adult hospital. Junior doctors will be training in your for some reason you cannot make a planned appointment, consultant's team for six months to two years. For this please phone the hospital beforehand and let them know. reason you may well see a different doctor at each hospital The doctor will then be able to see someone else instead visit. Other staff in the medical team may include a nurse, psychologist, geneticist, as well as many support staff such and you will be given another appointment. as technicians. Medical staff may ask you questions that Between outpatient visits you have been asked before, or ask you about things that are in your notes already. This can be really irritating but If you are concerned about any aspect of your health you they do need to check that things haven't changed for you should see your GP. You can also phone the GUCH unit since your last appointment and by talking to you they get and ask to speak with your GUCH nurse. Tell them who you to know you a bit better and have a fair idea about how are and what the problem is and they will be able to advise much you know about your condition. you or bring your appointment with the team forward. If there is no GUCH nurse available to you, try contacting At each GUCH specialist centre there is a least one your consultant's secretary who may be able to pass on a specialist GUCH nurse who is available to offer advice and message to your care team. support. These nurses have had additional training and they are available to every GUCH patient and their relatives who For more information and to download the leaflet visit attend the specialist centre. www.thesf.org.uk
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many visits! For that same time, I have been under the Andrew's transition same cardiologist who is so amazing and I'm so thankful for, even when he tells me to man up and get over stuff I still feel like a child. I recently turned the grand old age of that I should really stop worrying about at times!... When I 21 which means I can legally adopt a child and own a pilot's was 16 I went to a transition day at the hospital where they licence for a plane, neither of which are top of my priority went through the process of transitioning and talking about list. However, the one thing that turning 21 does mean is the similarities and differences between the children's that I now have no excuse not to be an adult. Between the and the adult services. They talked about getting contact ages of 18 and 21 I was still trying desperately to cling on to details for your new liaison nurses and reassuring us that being young by justifying a night in with a Disney movie and the process would be smooth and they were totally right. a onesie as a productive and efficient form of fun. Although my views on this kind of night in are still strong, I do now For me the transition process was a little different and have to accept that I am growing up and this brings its own arguably easier, as my cardiologist also worked in the adult unique challenges and joys. team and so I would still be seeing the same consultant whom I had seen for most of my life. The only difference I was born with a rare congenital heart defect called was the liaison nurses and also the fact that I would now Hypoplastic Left Heart Syndrome, which basically means be seen in St Thomas' Hospital. Another difference that I that the left side of my heart didn't develop properly and experienced for the first time in the summer when I went so only the right side of my heart functions. Because of to have my pacemaker replaced was the lack of screaming this, growing up was different for me compared to my babies and joyful chorus of 'if you're happy and you know peers. I always struggled to keep up with those around it clap your hands'. Unfortunately this was replaced with me, and from a young age, had to accept that my dreams old men snoring and needing the toilet every 10 minutes. of scoring at Wembley Stadium for England were probably I'm still not sure which I prefer. not the most realistic. But even though I would never be Wayne Rooney, I grew to realise that I had bigger dreams My parents were really great in the transition process of my own that to me were way more exciting than kicking and in my last couple of appointments in the children's a ball around and having a hair transplant. Over the years, department, left me to have the appointment on my own I've gradually learnt what my body can and can't handle, so that I could get used to asking and answering questions and although this is hard to accept at times, I've learnt to for myself and start taking control of my medical condition live within my limitations and not be discouraged. Instead, and the decisions that go alongside it. I really believe that it's important to focus on what you can do and work as as soon as you're ready, it's important to learn about your hard as you can to make the most of what you have! heart condition and start taking control of it to give you independence for the future! The whole purpose of this article is to talk about my experiences transitioning from the children's services to Transition really wasn't bad! It's allowed me to take control of my heart condition and start making decisions the adult services, so I guess I should move on and talk for myself. This has given me so much independence about the 'horrors of transitioning!' I'm joking, calm your and allowed me to go to university comfortably without pacemakers...it was so simple and not horrible at all! having my parents around but knowing they were nearby Since about the age of five, I have been seen at the Evelina and would help at any time. The only downside is the Children's Hospital in London. It's an amazing place with considerable lack of turkey dinosaurs and smiley faces on incredible doctors and nurses who have seen me through offer at dinner time in the adult ward!
www.lhm.org.uk 15 Abigail's journey
Written by: Claire Stewart, Abigail's mum
Dave and I were very excited when we found out we were pregnant again, a little brother or sister for Isobelle. We were excited to see how our new addition was doing at our 20 week scan, this little life who was growing and whom I had been feeling moving around from around 14 weeks.
We went for our scan at the Queen Elizabeth Hospital (QE) what we had decided, which I think he and the nurse with in Gateshead. Everything was going OK until it came to the him already knew as he had the next appointment for us. heart, a second opinion was needed and we were told to go We were told that we would be under the RVI and would back to the waiting room. We were a bit confused about what be scanned every month to check on the baby, make sure was going on. We were called back in and this time there everything was OK and get as many pictures as possible was a consultant in the room. We were told that whilst doing for the Freeman Hospital. We were told that the full the scan they were unable to see the four chambers of the diagnosis would not be made until the baby was born. heart, we were told not to worry at this time but we needed It took a few days for it all to sink in. Close family and friends, to go to the Royal Victoria Infirmary (RVI) in Newcastle to get one who is a heart mum, were told but Dave and I just a more in-depth scan. We didn't know what to do, we only needed the extra days to get our head round it before we had to wait a few days but those few days were very surreal told the world. Without Dave I would not have handled this, and very long. Many things went through my head, what if he has been a rock, from the start he has been "right, let's do something was wrong, what do we do, what options do we this, we can do this", he has been strong for all of us. have, how are we going to cope? I remember going home after the appointment and going The day arrived and we went to the RVI for our scan. I straight to Google, but I could not find anything about remember how more high tech the room was compared HRHS. There was lots of information about HLHS which I to the QE. The consultant explained that they were going did not read. to have an in-depth look at the baby's heart and see what was going on. After what seemed like forever we were told Once we had got our head around it, we told everyone that our baby's heart had not fully developed. The right- else we knew. I remember writing an essay of a status for hand side had not developed properly, this was called my Facebook as I had loads of messages asking about Hypoplastic Right Heart Syndrome, the right pump had not how my baby's scan had gone, where are the photos, etc? developed and the right small chamber was like a deflated Once I had posted it, I had many friends saying sorry to balloon. There was also a narrowing. All I remember was hear about my baby's heart, but one thing that did surprise being in shock... There was nothing like this in Dave's or me, I found out a couple of friends had heart babies. Their my family, how could this be possible. We were put in a babies have different conditions but it did help knowing side room so we could take five minutes to digest what we that there were people who knew the journey we were had been told. The consultant came back and talked to us about to start. I began to get a picture of our journey some more. He drew a diagram of how the heart looked ahead, no sugar coating this experience. The owner of my and how it affects the body. We were told our options, workplace also knew what we were going through as his which were to terminate the pregnancy or continue niece has a heart condition and had had her operations at with the pregnancy, have our baby and then I would be the Freeman Hospital. transferred to the Freeman Hospital where there would be My pregnancy went along as normal with my extra scans, a series of open heart operations to help my baby or in the it was nice seeing my baby every month knowing that he/ worst case he or she would need a new heart or not survive. she was happy in my belly. We were given time to discuss this between the two of us. I received a phone call from our cardiac nurse, who came There was no way I was giving up my baby, I couldn't do to visit us. She gave me a filofax which I read cover that. I had a special baby, sent to us for a reason and we to cover as it had a lot of information about my baby's were about to embark on a journey along a tougher road condition and she explained what would happen when my than normal. I cried through all of this, and it wasn't for the baby came in to the world and what lay ahead. We also fact that my baby had a heart condition, it was the fact arranged a visit to go and see where my baby would start that the first option was to terminate. I do understand that his/her life, meet some of the nurses who would be looking sometimes this option has to be taken, but there was the after my baby and see other heart parents who gave us a option to help my baby... The consultant came back to see smile and a look to say we know what you're going through.
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Nothing“ fazes her, she is a very determined little girl who is very proud of her special heart.
We were booked in to be induced on the 24th October. My put on medication to help drain it. We got to go home for baby had other plans and at 36 weeks I went in to labour. a weekend but were back in to get the fluid drained. “But it At 23:59 on the 4th October, Abigail Jean was born pink came back so away she went to get drains put in for a few and screaming, our little 5lb 7oz bundle. We got to have days. They also put a little drain in her diaphragm so any cuddles with her before she was taken to special care to fluid would drain and be absorbed by the body. have her drip put in and to get ready for an ambulance ride We were eventually allowed home towards the end to the Freeman. I saw her in the incubator before she left, of November. We got to spend Christmas as a family sucking her thumb. I had to wait till the next morning to and once New Year had passed we were at our clinic be discharged so I could go over there. When I got to the Freeman, Abigail was in the High Dependency Unit (HDU) appointment discussing the next stage. Since she was all wrapped up like a present because she kept pulling small and just putting weight on a little at a time Abigail her cannular out. We were told all was good and her sats was given an NG tube to top her up. I think Abigail likes were good too. We met her consultant who confirmed that nurses, as the community nurses were having to come her condition is HRHS, severe pulmonary stenosis, absent every other day as she kept pulling it out, we had the right AV connection. If you are like me, the words confuse nurses three times in one day and I had to chase her up me but once shown on a diagram I understand. At seven the street one time as I had just let them out and she had days old she was going to have her shunt operation. When pulled it out again. the day came, we were left waiting and waiting but no one May time came and Abigail was asked to go in for cardiac came. Finally her consultant came and told us that her catheter. We were told the stay would only be a couple of surgeon Mr Hassan and himself had decided to leave her days but Abigail decided and see how she went, no drip, nothing, just let her grow. different. She went for We spent the next few weeks wandering around the her catheter and they had hospital feeding her up. On her induced date, 24th trouble getting her to wake October, Abigail went for her shunt, as in the days before up in recovery, once they she had started to show signs of blueness... That was the did, because of low sats longest eight hours of my life. We got to see her afterwards she ended up on oxygen. in PICU, couldn't believe how small she looked with all She was like that for a few the wires. The next day when they performed a scan they days so they decided it was noticed some fluid around her heart, which they said was time to do the Glenn and normal, just something the body does sometimes after so what was supposed to operations and they would keep an eye on it. She quickly be a two day stay ended recovered from her operation and was soon back in the up being three weeks with HDU. I remember them taking the bandage off and being open heart surgery. Once surprised at how neat her zipper was, I think I was thinking we got home we settled it would be messy. She was still collecting fluid so was back into normal life.
www.lhm.org.uk 17 Abigail's journey ...continued
Written by: Claire Stewart, Abigail's mum
In December 2016 we received a call saying there was Abigail who was awake and talking to the nurse who was space for Abigail to receive her Fontan, it's a scary moment looking after her. The nurse told me that since she came off when you get a call like that but we said yes. We sorted out the ventilator she had been talking to everyone, sleeping a back-up plan for Christmas and waited. We did not get in between and handling the pain very well. She spent the the call till the end of February, as the hospital was busy night watching DVDs, colouring and asking the nurses lots over Christmas, they had surgical spots but no bed space in of questions about what they were doing. PICU or on the ward. We received the call on a Wednesday for her to go in to hospital the day after. I didn't have time to Abigail was only in PICU think about what was happening, I was on autopilot. I had for a couple of days, then bags sorted so it was just sorting out Abigail's dad's work back to the ward. She and people to help out with her sister and brother. had her drains removed after a week, there was a We picked her up from school and went straight to the small issue about going Freeman Hospital so they could do all the pre-op checks. I to the toilet but once had read other peoples stories of how their little ones had that was sorted we were handled this operation, especially now she was older and home after two weeks. more aware of what was happening, this helped a lot. She has had chicken pox She was second on the list, but at the last minute this and a small surgery since changed and she was moved to first. Panic set in as her her Fontan as her scar dad was at home to take the others to school and was became infected. then coming to the hospital to see her before she went Abigail since the word go has never shut up, she is a very to theatre. But after a mad rush and a morning of missed school for the others, dad made it in time to see her and chatty little girl with a wild imagination. She loves playing with take her through for her operation. figures, dolls and drawing. She was just over a year old when she crawled and 19 months when she started to walk, just The operation lasted for around eight hours and we finally in time for her brother Adam to be born. She loved starting got the call to go to PICU and speak with Mr Hassan, her nursery and having a heart condition has not stopped her surgeon. He told us everything had gone well and he had at all (the teachers get more panicked than she does), even done all that he needed to do. We got to see her briefly and when she crashed her bike into the wall she jumped straight was very surprised at how pink she was. We sat with her back on again. Nothing fazes her, she is a very determined for a bit and let her brother and sister see her before they little girl who is very proud of her special heart. went home. I stayed that night and went back to check on her before I went to have a shower and catch some sleep, We have had quite an easy journey compared to others but but I wasn't allowed in because she was being taken off I still have moments where I panic in case she is doing too the ventilator as she wanted it out. I spoke to Abigail's dad, much, jump if my phone rings, in case it's the school and and then fell asleep. I woke up at 3 a.m. and went to see something has happened, I'm going to be a wreck when she is older and out with friends. Abigail is a strong young lady and no heart condition is going to stop her, in fact she says when she is bigger she is going to be a doctor and help other children with special hearts just like her... Abigail is doing well, she just turned six years old and is enjoying year one at school.
18 0121 455 8982 Fundraising wall
Thank you so much for all of the brilliant stories and images that you have sent us. If you are organising an event, taking part in a run or holding a bake sale then we'd love to see your photos. They may be used on our Facebook page, our website or in our newsletter. Send us your snaps to [email protected]. Mark and Elizabeth Hennessy took on • the Velothon Wales raising £655.
Rachel Kavanagh raised over • £1,000 running the London Marathon.
Julian Rowlands & team took part • in the Great North Run raising £6,800 and counting. In brief We'd also like to say thank you to: Richard Barley who raised over £2,000 by Caroline Pickup & team hosting a concert. • raised over £1,000 getting muddy in the Tough Mudder. Craig Santus raised an incredible £4,300 by holding a live music festival. David Donnelly turned 40 (we hope he doesn't mind us mentioning this!) and instead of presents, he asked people to donate to LHM. He raised nearly £700! Conor Campbell and Cabrain FC raised £900 at their annual charity football Vicki and Dan Holtom match. • bravely raised over Ben and Sam Kershaw, these fantastic £1,000 by throwing brothers ran the Warrington Half Marathon themselves from a plane! and raised the incredible total of £1,260. Zara Turner along with friends Hayley and Kirsty travelled to Germany to take on Westerly Winds raised £160 by the Cologne Marathon raising over £1,500! • performing a concert in a shopping Judy Harrison joined friend Angie for the centre. last few legs of her walk from Lands' End to John O'Groats, Judy raised a massive £1,860! Laura Hillhouse ran the Edinburgh Half • Rose Kavanagh ran the Great Midlands Marathon in memory of Marcus raising a Fun Run in memory of her brother. brilliant £1,500.
www.lhm.org.uk 19 Spotlight on DLA and PIP Written by: Suzie Hutchinson
Most children and young adults with a single ventricle heart should be able to claim some level of Disability Living Allowance (DLA) or Personal Independence Payment (PIP) as their care and mobility needs are consistently greater than those of their peers.
Over the last few years changes to the Department for Work and Pensions benefits process has meant that more STEP ONE and more LHM members are being turned down for the allowance. Mandatory reconsideration (within one month of the letter turning down your Take time to plan your application and look at the support application) available to help you every step of the way. If you wish to appeal the DLA decision the first step is to LHM have a series of support booklets for parents ask for a Mandatory reconsideration. On the letter turning completing the DLA forms and for our young adults down your application this process will be explained. You (and their parents) for the adult version of the allowance should appeal in writing, explaining why you think their Personal Independence Payment (PIP) - visit www.lhm. decision is wrong. It is important to make sure that when org.uk/information/lifestyle-information/benefits- you ask for the reconsideration you can clearly give a disability-allowances/ reason why each one of their stated reasons for dismissal are wrong. Spend time thinking about this before you write REMEMBER TO KEEP A COPY OF YOUR your letter. APPLICATION. The DLA team can either decide they were wrong and It may be needed for an appeal. award the allowance or they can say their first decision was right and give you the option to appeal. Sadly many applications are turned down at first In most cases you will be turned down again. application. This can be for a number of reasons.
The form may not give the DLA team enough STEP TWO information about added care and mobility needs. Formal appeal The form may expect the DLA team to understand the disability because of the diagnosis. (this is an appeal to the Social Security and Child Tribunal) The appeal must be made within a month of being turned The information from the doctor does not set out the down, following the mandatory reconsideration. day-to-day disability. The tribunal is independent of government. A panel of The information from the school or employer does people, one lawyer, one representative of disability or not set out the special needs of the child. social care and a medical representative will listen to both sides of the argument, yours and the DLA team, before The DLA team are trying to cut down on the number making a decision. of successful claims. There are two ways to appeal to the tribunal team. DLA/PIP applications are all about the evidence available to back up your claim. Written Make sure that anyone you ask to support your application Appeal on the appeal form, this should have been sent out really knows you or your child's needs before putting their with the last decision from the DLA team. If you have not name forward as a contact. received one ring the number provided for an appeal and request a form. If the DWP turn down the first application do not despair there is a pathway to taking your claim forward. Make sure that you clearly set out all the added care needs
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for the child or adult on the form. Tribunal hearing You will also need to obtain added supportive information This is a face-to-face meeting with the tribunal panel. to add to your appeal. You still need to submit the appeal form and send in any A letter from your cardiologist or specialist nurse. supporting documents, as set out above, but it allows you This should not be a copy of the last clinic letter but an opportunity to answer any questions that the tribunal a new letter that explains the day-to-day care have face-to-face. and/or mobility needs of the child. If you want to go to a hearing you must say whether: Copies of test results and last clinic letters if they you have a representative who'll be at the hearing; explain the day-to-day needs well. you need an interpreter; If your child has ongoing care from a paediatrician they can help to draw a picture of your child's day- you need any special arrangements, e.g. because of to-day needs. mobility or other health issues;
A letter from the nursery, school, further education there are any days when you can't make the college, university or employer. Again make sure hearing. that it explains added care or mobility needs.
Letters explaining a development or learning Call the helpline if you have any questions difficulty and the added care that needs to be put in about completing the form. place. The helpline can't give you legal advice. Educational, child or adult psychologist - if a psychologist is involved in diagnosing or supporting Social Security and Child Support Tribunal an educational or emotional problem they can help (England and Wales) explain added care needs. Telephone: 0300 123 1142 Any other health or care team members e.g. GP, Monday to Friday 8.30 a.m. to 5 p.m. dietitians, health visitors, community nurses who know you or your child and your needs. Social Security and Child Support Tribunal (Scotland) LHM - LHM will always submit a letter to support an appeal but the team need to see a copy of Telephone: 0141 354 8400 the original application and will want to talk through Monday to Friday 8.30 a.m. to 5 p.m. the current day-to-day needs.
www.lhm.org.uk 21 Spotlight on DLA and PIP Written by: Suzie Hutchinson
Your applications will be sent to the DLA team, they'll be Your decision letter will have more information. asked to respond. You'll be sent the response, and you must bring it with you to the hearing. Get a decision set aside The tribunal will then write to you with a hearing date. The You'll be told how to get a decision 'set aside' (cancelled) hearing will usually take place at the nearest tribunal to if you think there's been a mistake in the process. where you live. You must send your evidence to the tribunal as soon as Appeal to the Upper Tribunal Administrative you can before the hearing so it can be sent to all parties. Appeals Chamber More information will be on the letter you get confirming You can only appeal to the Upper Tribunal (Administrative your hearing date. Appeals Chamber) if you think the decision was wrong for If you would like any support getting ready for a hearing a legal reason, e.g. the tribunal didn't: just give the LHM team a ring and we will work to help you prepare. give proper reasons for its decision, or back up the decision with facts; The hearing apply the law properly. You (and anyone you've brought to take part in the hearing) may be asked questions by: You must then follow three steps:
your representative (if you have one), e.g. a lawyer, 1. Ask the Social Security and Child Support Tribunal friend, family member or someone from an advice for full written reasons (known as a 'statement of centre; reasons') within one month of the date of the decision. The decision letter will tell you how to do this. the government department or council's representative (known as the 'presenting officer'); 2. Ask the Social Security and Child Support Tribunal for permission to appeal to the Upper Tribunal a panel of experts - who they are depends on what (Administrative Appeals Chamber). the case is about; 3. If the Social Security and Child Support Tribunal the judge. refuses, ask the Upper Tribunal (Administrative Appeals Chamber) for permission to appeal. The tribunal will provide you with an interpreter if you've asked for one. They can translate what happens during LHM are pleased to say that most families do get the the hearing but they can't represent you or give you legal allowance following the Tribunal. advice. As always if you have any questions or concerns about the The tribunal's decision appeal process just give the LHM team a ring on 0121 455 8982 or email us at [email protected] You'll get the decision either:
at the hearing or If you want to apply for DLA or PIP, the contact numbers are: by post. Disability Living Allowance If you're unhappy with the decision 0345 712 3456 You may be able to: www.gov.uk/disability-living-allowance-children Personal Independence Payment get a decision 'set aside'; 0800 917 2222 appeal to the Upper Tribunal (Administrative www.gov.uk/pip Appeals Chamber) .
22 0121 455 8982 Christmas merchandise
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www.lhm.org.uk 23 Zipper zone
Written by: Lexie Katsatis
Hi my name is Lexie and I am the new Youth Leader at LHM. I'm really excited to meet all the youth members and their parents/carers in the future.
I am really concentrating on communication and coming up learning a great deal about their with ways to ensure that the youth's voice is really heard. energy levels having taken part in It's so important to know what kind of support they want a session on the spoon theory. and make sure we can provide this. The LHM team would like to thank Support can come in many shapes and sizes including Dr David Crossland, Freddie Hutchinson, tailored events, one-to-one chats and introducing youth Nicole Terry and Chloe Woodcock for members to each other so that they know they are not giving up their weekend to support the alone. I also want to make sure that you know about event. anything we do or the support we offer. You are the main We have started to plan the next year's support system for our heart warriors and together we activities so if you are 11 to 16 years old and in can work to ensure that our youth members are informed, secondary school watch out for the details next year. comfortable, supported and having fun. If anybody has any questions or queries I'm available to speak either on the Little Hearts Matter phone (0121 455 8982) or by email ([email protected]). On these pages we show a little of the events and meet ups that have been taking place over the last few months. Activity weekend Over the summer we took 15 young members on an activity weekend at a PGL centre in Lincolnshire. As you can imagine planning to take a mixture of heart-healthy and heart-affected young people into the wilds of the countryside takes some planning. The venue, support staff, activities and even the sleep and food arrangements have to be carefully planned to make sure that everyone has a great time and remains safe. We want to help our young members to achieve new and exciting things: to step outside their normal comfort zone, meet new people, try new and thrilling activities and find answers to the questions they have about living with a heart condition.
The most important thing that I learned was “the amount of spoons used by different activities. (Thomas)
The giant swing, canoeing, survival and archery came out as the top activities but the young members“ also enjoyed
24 0121 455 8982
I had a fantastic time, made new friends that had heart problems also. The staff were really “ helpful and very encouraging. I can't wait for next year. (Aki)
EGX gaming event “ In September, Lexie and two youth members were able to attend the EGX gaming event at the NEC in Birmingham. This was a great event where there was opportunity to learn, plan, watch and try new experiences. The boys were very excited to try new unreleased games and quickly showed their skills, something that Lexie was not on par with! Both of our young members were very skilled and knowledgeable and taught Lexie very quickly that gaming is no longer a case of jumping up and down and using tails to collect golden rings. There was however a 'retro' area at the exhibit in which the old classics were also available. A few career talks were available to sit in during the day as well as many universities populating stands and willing to talk to young people about what direction their journey could take as well as offering great advice. This was particularly useful for one of our young people who is very interested in game design as a career. The boys had met previously at a LHM event a few years ago so this was a great chance to catch up and see how each other were doing as well as talking through transitions in the medical service they receive and college. Over the last year we have been testing different types of get togethers for our young members. We held a small All in all this was a really fun day and really useful too. event at Twycross Zoo also. Do let us know what events Mini events that cater to our youth members location and young members would like in the calendar next year as interests are definitely something that LHM want work on in we begin to plan next year's events. the future.
www.lhm.org.uk 25 Noticeboard
MedicAlert The MedicAlert Foundation is a registered charity that provides life-saving information services, supported with internationally recognised medical ID jewellery. This means that in an emergency, in addition to information engraved on our jewellery, medical professionals will have access to vital medical details which are saved on a secure electronic record. This information can be accessed 24/7 from anywhere in the world, using the unique membership number engraved on MedicAlert jewellery. One MedicAlert member is Maya, six, who has been a member since 2013 and her mother, Joyce, explains how MedicAlert has helped their family:
As with all toddlers, we feared that Maya may wander off and become “separated from us and have a medical emergency. Being so young and unable to talk, we knew that the MedicAlert bracelet was just what we needed. Many years on, Maya talks nonstop, but the worry of no one knowing what is wrong with her still remains. The MedicAlert bracelet that she wears reassures us that she will have a voice and it gives us comfort.
By being a MedicAlert member, you will also benefit from the support of our team of nurses who will check that the information you provide is medically sound, and ensure that your most critical details are prioritised in order to aid recovery in an emergency. “ To view our range of jewellery or find out more please visitwww.medicalert.org.uk
This Christmas, Little Hearts Matter's Raise a Smile campaign is asking SAVE THE DATE for your support to raise £8,000 towards our Fontan package for 2018. The LHM Open Around 200 children with half a working heart every year go through a life-saving, scary and stressful Day and AGM operation called the Fontan procedure. LHM want to provide will be held on a support package for all the children and their families Saturday 17th March going through this and this Christmas we want to: at raise funds to provide the Fontan support packages; The Beeches Conference Centre raise the children's spirits after this traumatic time; Birmingham raise the hopes of the children's parents; Application forms and raise a balloon that we send after the operation. details will be sent out in And ultimately....raise a smile the first week of January. Please find more details on the leaflet enclosed and go to www.justgiving.com/campaigns/charity/lhm/raise-a-smile
26 0121 455 8982 The LHM Publication list team Don't forget the following publications and packs are available Meet the office team free of charge to members. at Little Hearts Matter and see who does • Antenatal Information Pack what for the charity. Suzie Hutchinson Ian Carr • Preparation for Hospital Booklet Chief Executive and Fundraising and Service Lead Marketing Manager • Benefits - a guide for parents
• Early Years Foundation Stage (EYFS) and Key Stage 1 Education Booklet
• Key Stage 2 - Junior School Education Booklet
• Transition to Secondary School Education Booklet
Tina Walmsley Paula Hughes Lexie Katsatis • Key Stage 3 Secondary School Management and Office Secretary Youth Leader Booklet Governance PA • Key Stages 3 - 4 Secondary School Booklet
• Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition
• Support for a Child with Special Educational Needs within Nursery, School or Further Education
Michael Burnett Deb Rahman Harjot Kaur • Baby / child DLA booklet and Grant Fundraiser Design and Information Fundraising sample pack Administrator Co-ordinator • Fontan booklet
• MCT Diet Little Hearts Matter • Living with Anticoagulation 75 Harborne Road, 4th Floor, Edgbaston, Birmingham, B15 3BU • Information Filofax 0121 455 8982 I [email protected] I www.lhm.org.uk • Travel and Trips @LHM_UK Littleheartsmatter heartlog.tumblr.com • Sports and Exercise
www.lhm.org.uk 27 Over to you
Here are some great back to school photos (sorry we couldn't fit all of them in!)
Amelia (6) Ben (6)
Ellis (8) Harriet (3)
Caitlin (16)
Kymani (5) Harry (16) Lucia (4)
Would you like to share your photos or stories – achievements, things that have made you proud – however big or small? If your child has swum a length of the baths, or gone off to their first day at school or nursery, we want to know about it! Email your photos, stories, recipes and ideas to Erin (4) Samuel (11) [email protected]
A company limited by guarantee, registered in England and Wales, number 06442071, 28 registered office 75 Harborne Road, Edgbaston, Birmingham, West Midlands, B15 3BU, registered charity number 1123290.