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HEARTSLOCAL Support Booklet for Regional Heart Families Travelling to Sydney for Surgery Treatment An initiative of HeartKids NSW ACT HeartKids CEO Message Most people aren t aware that 8 children are born every day with Childhood Heart Disease that is 1 in every 100 births. HeartKids is there for these families from the moment of diagnosis throughout their journey by providing high quality caring support information and advocacy and to give hope by driving world class research. We trust that HeartsLocal provides useful information that helps families traverse the challenging journey that is Childhood Heart Disease and ensures they know that they are not alone. Warm regards DAVID ROSE Chief Executive Officer 2 INTRODUCTION With the generous support of Newcastle Permanent Charitable Foundation HeartKids NSW ACT has created this resource to make the experience for regional heart families travelling to Sydney for surgery a little less daunting. Overview This resource covers just about everything you need to take into consideration when planning your trip from what to pack to emotionally preparing your children right down to where to park when you arrive at hospital. HeartsLocal Video Please view the video at the back of this booklet which provides a heartwarming introduction to this resource. QR Barcodes As you ll see QR codes have been used extensively throughout this booklet. This is so that you can quickly and easily scan the codes with your smartphone to directly access relevant websites for specific information such as train timetables accommodation information and hospital virtual tours. 3 TO GET STARTED Download a QR Code Scanner from If you have an iPhone the App Store www.itunes.apple.com If you have an Android Google Play www.play.google.com Simply type QR Scanner into the search area and a range of options will come up. It is best to select an app with at least a four-star rating. If you don t have a smartphone you can still visit the specified websites from your personal computer or a library computer by following the web search instructions provided. Family Stories You ll find real life family stories interspersed throughout these pages as well as tips and advice from heart families who have walked the path before you. We hope you find their words heartening as you embark on the journey ahead furthermore that you keep at the forefront of your mind that you are not alone HeartKids NSW ACT is here to help. 4 CONTENTS About HeartKids NSW ACT Accessing Financial Support The Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) Centrelink HeartKids NSW ACT Financial Assistance Program The Children s Hospital Westmead Overview Location Floor Plans & Virtual Tour Heart Centre & Wards Hospital Food & Facilities Getting There Parking Local Conveniences Public Transport Accommodation Preparing for Your Stay Planning in Advance Understanding the Medical Side Preparing your Heart Child Preparing your Other Children What to Pack Sydney Children s Hospital Randwick Overview Location Floor Plans & Virtual Tour Wards Hospital Food & Facilities Getting There Parking Local Conveniences Public Transport Accommodation Personal & Family Wellbeing The Importance of Self Care Physical Self Care Emotional Self Care Emotional Care for your Heart Kid Caring for your Other Relationships Caring Hearts Program Returning Home from Hospital Being Emotionally Prepared Concerns About your Child s Health Regional Outreach Services Support Directory HeartKids Claim Forms Understanding the Hospital System The Sydney Children s Hospital Network 5 HEARTKIDS NSW ACT A registered children s charity HeartKids NSW ACT supports children with Childhood Heart Disease (CHD) and the families who cherish them throughout NSW and the ACT. About Us Our support services focus on ensuring that heart families are not alone on their journey with CHD. We also advocate on behalf of the CHD community and work hard to raise public awareness about the disease its impacts and the vital need for increased levels of support. Importantly we partner with leading cardiologists and researchers who are working to reduce the incidence of CHD and to decrease the unacceptably high mortality rate. Peer Support HeartKids NSW ACT provides a range of peer support programs and initiatives including Employment of Family Support Coordinators. These heart mums have walked the CHD path are available in the two Sydney hospitals to provide care bags and voucher assistance as well as a supportive listening ear Peer Support events including annual Family Camps and a Teen Camp regular playgroups as well as special outings where families can meet and share their stories Bereavement support Regional Support HeartKids NSW ACT employs a Regional Coordinator and Regional Officers based in Canberra Newcastle and Orange as well as engaging the services of 15 volunteer Regional Representatives throughout ACT and NSW. Together they provide a comprehensive outreach support program for regional families via local face-to-face contact activities and support initiatives everything from simply providing a shoulder to lean on to social events and financial assistance. 6 Financial Assistance HeartKids NSW ACT aims to reduce the financial impact of CHD by offering vouchers and reimbursements to families coming to hospital as well as reimbursements on Home INR testing units (Coaguchek units) and strips. Our Caring Hearts program also provides financial support to help families access professional counselling. Awareness & Education HeartKids NSW ACT works to promote public awareness around CHD. We also offer a range of information resources and run education initiatives aimed at the CHD community. Our Vision We aspire to life unaffected by Childhood Heart Disease. Our Mission To improve the lives and futures of those affected by Childhood Heart Disease by providing high quality caring support information and advocacy and to give hope by driving world class research. HeartKids NSW Website Upcoming Events For details about upcoming events please visit the following links www.heartkidsnsw.org.au www.facebook.com heartkidsnsw HeartKids NSW Facebook 7 IPTAAS Office Local Health District (LHD) Central Coast Illawarra Shoalhaven Murrumbidgee Nepean Blue Mountains Northern Sydney Southern NSW South Eastern Sydney South Western Sydney Sydney Western NSW Western Sydney Contact Details EnableNSW Phone Fax E-mail Post 1800 478 227 (02) 8797 6543 IPTAAS health.nsw.gov.au EnableNSW - IPTAAS Locked Bag 5270 Parramatta NSW 2124 Broken Hill Far West Phone Fax E-mail Post (08) 8080 1433 (08) 8080 1695 FWLHD-IPTAAS health.nsw.gov.au IPTAAS Coordinator Broken Hill Health Service PO Box 457 Broken Hill NSW 2880 ACCESSING FINANCIAL SUPPORT Tamworth Hunter New England Phone Fax E-mail Post 1800 424 585 (02) 6766 4576 HNELHD-IPTAAS hnehealth.nsw.gov.au IPTAAS Coordinator Phone and Government subsidies are available to support rural (02) 6620 2168 Fax (02) 6622 Northern NSW regional families requiring metro hospital care. HeartKids 1834 Lismore Mid North Coast E-mail TFH-IPTAAS ncahs.health.nsw.gov.au NSW ACT also endeavours to provide financialPost IPTAAS Coordinator assistance to help ease the burden of CHD. 8 The Isolated Patients Travel And Accommodation Assistance Scheme (IPTAAS) The Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government initiative designed to financially assist people particularly in isolated or rural areas who have to travel significant distances to access specialist medical treatment which is not available locally. Are You Eligible For IPTAAS To be eligible you must Be a resident of NSW or Lord Howe Island and also be eligible for Medicare Live more than 100km from the nearest treating specialist or accumulate journeys to your treating specialist which exceed 200km within a week Require specialist treatment that is not available locally Claim all benefits available through a private health fund prior to applying to IPTAAS (if applicable) Not be eligible for any other government travel assistance schemes How To Apply The fastest and most simple way to apply and lodge your claims is to apply online. Visit the following website www.onegov.nsw.gov.au and scroll down until you see the heading Travel Assistance for Isolated Patients (IPTAAS) then click Register for Assistance with IPTAAS. If this is the first time you have claimed an IPTAAS subsidy or the last time you claimed was before April 2014 you will need to register and obtain an IPTAAS Registration Number (IPR number) before submitting your claim. You only need to do this once. For further claims you will only need to use their simple online claim system to lodge your claim. You can also download IPTAAS Application forms at www.enable.health.nsw.gov.au and submit these to your local IPTAAS office by email fax or post. Register for Assistance with IPTAAS Download IPTAAS Application Forms If you have any queries or would like assistance with your application please phone 1800 IPTAAS (1800 478 227). 9 IPTAAS LOCAL CONTACTS IPTAAS Office Local Health District (LHD) Central Coast Illawarra Shoalhaven Murrumbidgee Nepean Blue Mountains Northern Sydney Southern NSW South Eastern Sydney South Western Sydney Sydney Western NSW Western Sydney Contact Details EnableNSW Phone Fax Email Post 1800 478 227 (02) 8797 6543 IPTAAS health.nsw.gov.au EnableNSW - IPTAAS Locked Bag 5270 Parramatta NSW 2124 Phone (08) 8080 1433 Fax Broken Hill (08) 8080 1695 IPTAAS Coordinator Broken Hill Health Service PO Box 457 Broken Hill NSW 2880 Email FWLHD-IPTAAS health.nsw.gov.au Far West Post Phone 1800 424 585 Hunter New England Tamworth Fax Post (02) 6766 4576 IPTAAS Coordinator Email HNELHD-IPTAAS hnehealth.nsw.gov.au Phone (02) 6620 2168 Lismore Northern NSW Mid North Coast Fax Post (02) 6622 1834 IPTAAS Coordinator Email TFH-IPTAAS ncahs.health.nsw.gov.au 10 Centrelink Centrelink delivers a range of payments and services for people at times of major change. For information on available support such as Carer Allowance please call 132 717 or visit www.humanservices.gov.au customer dhs centrelink Centrelink HeartKids NSW ACT Financial Assistance Program HeartKids NSW ACT is able to assist with some of the costs associated with your hospital stay. Vouchers & Subsidies The Financial Assistance Program is designed to relieve some of the financial pressures associated with having a child on the CHD journey. Assistance is provided in the form of In hospital vouchers pre paid cards including Coles vouchers Startbucks cards meal vouchers for hospital cafes and frozen meal vouchers Subsidised accommodation costs Subsidised travel costs (petrol) In certain cases subsided bills under our Financial Hardship policy Subsidised Accommodation Costs HeartKids is able to reimburse the first two nights accommodation for cardiac families at the Parents Hostel at both hospitals. We can also provide 100 per family staying seven nights or more in any of the accommodation providers we have an agreement with listed below. Ronald McDonald House Wesley Lodge Westmead Ibis Budget Wentworthville Randwick Lodge Please see page 60. for more information about accommodation at or near The Children s Hospital at Westmead or page 72. for more information about accommodation at or near Sydney Children s Hospital Randwick. To apply for this support please complete the Financial Assistance Reimbursement Claim form on page 81. Subsidised Travel Costs (petrol) 25 petrol vouchers are offered to families upon first contact a top up card of 25 per week for the duration of stay. On discharge another card will be issued depending on the travel distance to home Up to 200 km 25 200-400 km 50 More than 400 km 100 11 Financial Hardship If you are under financial hardship HeartKids NSW ACT maybe able to provide additional support in the way of Up to 50 worth of additional vouchers per week. This support is provided at the discretion of your Family Support Coordinator with approval from the HeartKids NSW ACT Head of Support. Reimbursements on basic living expenses (e.g. bills hospital car park etc.) up to 50% of the cost with a cap of 300. To apply for this support please complete the Financial Assistance Reimbursement Claim form on page 81. Care Bags HeartKids NSW endeavours to provide all families with a Care Bag containing a range of useful items to make the hospital stay a little more comfortable. Items typically include a notepad pen toiletries the vouchers listed above and snacks as well as a HeartKids information pack. B HAVE YOU RECEIVED YOUR CARE BAG If you have not yet received your Care Bag and vouchers or for more information about the HeartKids NSW ACT Financial Assistance Program please speak to your HeartKids Family Support Coordinator or contact Head of Support on (02) 9631 2600. 12 PREPARING FOR YOUR STAY This section provides tips and advice to help you get organised ahead of time with the aim to make your metro hospital stay as smooth and stress-free as possible. 13 PLANNING IN ADVANCE Working out the finer details sufficiently ahead of time will take much of the stress out of your metro hospital stay. This section offers some strategies to assist you to organise yourself and your family. Decide Who Will Accompany Your Child For some families it will be obvious who the best person will be to attend hospital with your child due to work and other commitments. Whether it s the child s mother father step-parent or other carer it s important that this person be somebody your child is very comfortable with. The remainder of this document is written aimed at the person who will accompany your child to hospital. Organise Time Off Work If you have a job it is best to give your employer ample notice that you will require time off. Discuss with your cardiologist how much time you will likely be at hospital and also how long you will be expected to care for your child at home postoperation and factor this into your leave. If you work for yourself you may wish to consider either engaging a subcontractor temporary employee to take on your workload during this period delegating tasks to other partners staff or advising your clients or customers that business will be closed for the specified period. Advise your Heart Kid s Teachers Let your child s teacher know when he or she will be required to commence this time-off period and also your cardiologist s prognosis regarding a likely return date. Advise Your Others Children s Teachers It is also a good idea to advise the teachers of your other children about the situation. This is to ensure that if there is any change to your children s behavior their teacher is empathetic and understanding. Ask your school to pass on any relevant information to your children s casual or substitute teachers. 14 B MAKE A CHECKLIST Jot down a list of things that form part of your weekly routine caring for your home and family. Your list might include School preschool drop-off School preschool pick-up Kids extra-curriculum activities Supervising homework Preparing meals Cleaning Shopping Taking Care Of The Home Front If you have other children it is important that life at home continues as normally as possible while you and your heart kid are away. The best way to make sure this happens is to check with your support networks of friends family school mums church group etc. and confirm that they ll look after the chores that you would normally do. Prepare Ahead Of Time Of the things on your list what can you take care of ahead of time Ideas include cooking and freezing meals and doing an online grocery shop with a delayed delivery date. Put The Callout For Help If you have a partner he or she may be able to take on some of these extra duties while you re away. However don t be shy about asking your extended support networks for help most people are more than willing to assist during a time like this. Perhaps consider which person is best suited to a particular activity. For example do you have a trusted friend who can pick up your other children after school preschool and care for them until your partner returns from work The best approach is to speak to your friends and family individually. You may also like to post your request for practical support on Facebook. Act Soon The sooner you put the call out for help the better. Not only will it allow others to commit the activity to their diary it will grant you peace of mind to know that your family will be supported in their normal routine while you re away. 15 UNDERSTANDING THE MEDICAL SIDE While some people wish simply to grasp what they need to know in order to properly care for their child others prefer to understand the nature of their child s medical condition and the remedial procedure in as much detail as possible... Whichever best describes you HeartKids NSW ACT suggests that you closely follow the guidance of your child s cardiologist with regard to your information sources. Research Reputable Websites If you choose to research the internet for information in addition to any literature your child s cardiologist provides you with we strongly suggest you stick to reputable websites. These include www.heartkidsnsw.org.au www.heartcentreforchildren.com.au www.rch.org.au heart-defects www.victorchang.edu.au congenital-heart-disease www.heartfoundation.org.au Heart Foundation children with heart problems information HeartKids NSW Website Online Forums It can be tempting to visit forums to read about other people s experiences with your child s condition and type of heart surgery with the hope to glean some insight into how things might pan out for your child. Whilst some benefit may be gained from seeking words of experience from a CHD veteran and aiming to connect with a support network HeartKids NSW ACT is reluctant to recommend online forums and the like. Each child s journey is unique and your child s cardiologist is the most reliable source of information when it comes to your child s prognosis. Scouring the internet for real life stories may in fact increase rather than quell your anxiety. Remember that the internet attracts all manner of people and many who have experienced grief are compelled to tell their story so you might come across a disproportionate amount of unhappy stories that bare no relation to your own child s outcome. Heart Centre for Children Royal Childrens Hospital Heart Defects Victor Chang Website Ask Questions If you don t understand an aspect of your child s condition or treatment don t hesitate to ask your child s cardiologist. It can be helpful to write down questions as they occur to you and bring your list to your next appointment. Heart Foundation Website B HEARTKIDS PEER SUPPORT PROGRAM If you would like someone to talk to who has trodden the path before you please contact our Head of Support on 02 9631 2600. We will seek to connect you to an appropriate HeartKids member via our Peer Support program. 16 PREPARING YOUR HEART CHILD HeartKids suggests you spend some time preparing your child. The more your child understands the process and procedures ahead the more likely they will feel confident and relaxed when the time comes. Of course your child s age and comprehension will determine how you approach this and what level of detail you go into. 17 Explaining What s Ahead The HeartsLocal pack of which this booklet is one component contains a helpful tool Sarah s Story to give your child the insight and confidence to face surgery. Sarah s Story is a beautifully illustrated children s book which provides an unintimidating account of some of the procedures your child will go through prior to surgery and what he or she is likely to experience soon after. Being Prepared for Questions Depending on your child s age and personality he or she may have no questions or many. Here are some common questions and example answers to guide you in your conversation. Where will I sleep Example answer There will be a comfortable hospital bed just for you. For the couple of days after surgery your bed will be in what s called the Intensive Care Unit where the doctors and nurses can keep a close eye on you. Most children stay in the Intensive Care Unit for a night or two. After that you ll be moved to a ward with other kids. Where will you sleep Example answer The heart ward of the hospital has special fold-out beds for mummies and daddies. I will sleep on one of these right next to your bed. I ll be there beside you so you won t need to worry. Will the operation hurt Example answer A special doctor called an anaesthetist will give you special medicine that will make you go to sleep. You won t be able to feel anything at all while the doctors are doing the surgery. When you wake up you might feel a little strange and even a bit sore but the doctor will give you medicine to take the pain away. What s if the surgeon makes a mistake Example answer The doctors who will be doing your surgery have done many hundreds of heart surgeries on kids just like you. They have studied for years at university and have had lots and lots of practice so they are extremely good at what they do. These doctors perform heart surgeries all day everyday and they have made hundreds of kids like you better so you needn t worry. When will I be able to play with my friends again Example answer Your friends should be able to visit you soon after you get home. You may wish to play quietly with them because you could be a lttle bit tired and after you recover from your operation. Staying Positive for Your Child If at all possible try to stay calm and positive for the sake of your child. By remaining optimistic and cheerful you will help to reassure your child that everything will be alright. 18 Child Life Therapy The Children s Hospital at Westmead and Sydney Children s Hospital Randwick provide child life therapists who are available to help your child prior to and during their stay in hospital. They are able to reduce your child s anxiety and stress by role playing with a life size doll that they can do pretend procedures on. To contact the Child Life & Music Therapy Department call The Children s Hospital at Westnead 02 9845 3717 or Sydney Children s Hospital Randwick 02 9382 6984. For more information about the department please visit www.schn.health.nsw.gov.au child-life-therapy-and-music-therapy The Children s Hospital at Westmead provides tours of the intensive care unit and the cardiac ward to children and families during their pre-admission clinic visit. However at times this may not be possible due to clinic staff availability and may also depend on how busy the units are on the day. Child LIfe & Music Therapy Further Reading The Sydney Children s Hospitals Network has produced a terrific guide to assist you to prepare your child www.schn.health.nsw.gov.au preparing-your-child-for-hospital-stay Preparing your child B HEARTKIDS NSW ACT SUPPORT TEAM Remember if at any time you would like to speak with someone with regard to preparing your child you can call HeartKids NSW ACT s support team on (02) 9631 2600. 19 PREPARING YOUR OTHER CHILDREN Naturally your other children will be affected to some extent by your absence and your child s surgery. The better they are prepared for the experience the better they are likely to cope and adjust to their new temporary routine. Explaining What s Ahead It is best to sit your children down and explain to them what they can expect during the period ahead. Let them know as many details as possible that relate to how they will be affected including How long you and your heart kid will be away Who will do the things you normally do while you re away How you and your children will communicate while you re away When they are likely to come to hospital to visit Any extra responsibilities you d like them to take on during this period Also explain what the surgery means for their heart kid sibling and reassure them that their brother or sister will be in very good hands in hospital. Encourage them to be Mummy s Little Helpers Depending on your child s age this could be an opportunity for them to take on some new responsibilities to give them a sense of pride and make them feel special. Chores could include making their bed in the morning hanging out the washing making their lunch for school or helping with their younger siblings. You can help make your child feel proud and happy about being such a good helper by encouraging them to tell you all about what they did to help that day when you speak to them on the phone from hospital. If your child doesn t seem too happy about helping out then maybe a reward system could work. You 20 could promise them a new toy a family outing or some special one-on-one quality time together when you come back home. Reassure Them Your children may need extra reassurance from you at this time that you love them and will always be there for them. Telling them this is so important as too are lots of cuddles Dealing with Jealousy & Difficult Behavior Children can respond in all sorts of unpredictable ways to a major disruption in their lives. The extra attention that your heart child is receiving at this time may cause your other children to react with jealousy. If you find that this is occurring you might find the tips below helpful. Ensure that your other children are also getting some special attention whether from you your partner or spouse or another relative or close friend. Try to keep them in their usual routine as much as possible. This will help them to feel stable and secure. Include them in your heart kid s recovery allow them to visit him or her give them updates on your heart kid s progress and allow them to communicate together over the phone Skype. Try to spend one-to-one time with your other children doing things that they enjoy. This will help strengthen your bond and reassure them that you are still there for them. If this is not possible due to your care commitments to your heart kid perhaps your partner or spouse could take this on. 21 WHAT TO PACK So the time has finally come to gather a few selected belongings in preparation for the big trip. The following lists may assist you in deciding what you should take. 22 Medical checklist Make sure you have everything listed below ready to show to hospital staff Your child s personal health record such as their blue book immunisation record and any other health summaries you may have Medicare card Health insurance details or evidence of current fund membership A list of medications or treatments your child is currently receiving as well as the medications themselves to show hospital staff Any equipment which your child needs to aid mobility feeding or communication Your family doctor s name address and phone number Your general paediatrician s name address and phone number if your child sees one regularly Any relevant x-rays and results from pathology tests Personal Checklist Clothes (including pyjamas and slippers) shoes. It can be cold in hospital so pack warmly especially for night. Thongs for the shower are a good idea. Pyjamas and clothes for your child. Soap toothbrush toothpaste hairbrush makeup shampoo conditioner hair dryer. It s also very drying in hospital so pack hand cream and lip balm etc. A diary notebook for you to keep information in. Many families like to keep a journal of their child s stay to keep informed have the information for family and friends and to look back on in future years. You are also able to take photos of your child in intensive care and on the cardiac ward. Even though you may feel funny about taking a photo of your child soon after surgery at some stage they will ask you about their scars and you will be able to show them photos and explain what happened A favourite toy or comforter colouring pencils or games iPad Nintendo or DS handheld consoles School books and homework (the hospital has a school run by the Department of Education and Training) Special dietary formula and any special treats you child might like to eat Money for your meals parking and accommodation Magazines books Sudoku crosswords etc. Change for phones or phone cards Chargers for iPad and phones Storage space on the wards is limited so please do not bring too much with you. We recommend you leave valuables at home as the hospital cannot accept responsibility for any lost belongings. 23 THE MARTIN FAMILY East Maitland NSW Harp Harp er in hospi da er to y tal Harper s first surgery was at three days old on the 21st of August 2012. She had a BT Shunt put in as she had Hypoplstic Right Heart Syndrome with Pulmonary Atresia. We stayed in Sydney from a week before Harper was born up until she was discharged 10 days later. Harper s second surgery was at five and a half months old on the 29th of January. This time she underwent a Glen Shunt procedure. We stayed with her at hospital until she was discharged after 10 days. For both surgeries we asked a lot of questions and we received the answers in great detail. The medical team was very patient upfront and honest and prepared us in every shape and form possible. To prevent becoming overwhelmed we found it best to only take in information about the present surgery at hand. The only thing I wished I was more prepared for was how Harper would look when she came out of surgery. It was confronting to see her swollen covered in tubes and her inclusion exposed with a clear dressing over it. My only advice is stay strong for your child. As hard as it may be to hold back the tears I believe that keeping a smiley happy face and cheerful positive attitude really does help a child with their recovery. Ashlee Martin Harper s mum 24 PERSONAL & FAMILY WELLBEING Whilst the experienced medical team attend to the physical needs of your heart kid there is a lot you can do to make sure you and your family remain well emotionally connected and in good spirits. 25 The Importance of Self Care One of the things that parents caring for a sick child find most difficult to do is focus on their own wellbeing. Yet self care is so important for so many reasons. By looking after yourself you will be able to care for your child both physically and emotionally. Also if you become rundown by not meeting your own needs and get sick you won t be able to look after your child and may be restricted from visiting them. Remember your child will watch you and your reactions to things around them. By taking care of yourself so that you are well and having a positive and optimistic outlook you will show them that things are going okay. Physical Self Care Keeping your body fit and healthy will help you to feel on top of things making your experience of caring for your child at hospital a more positive one. Eating Well Try to maintain a healthy balanced diet while you are caring for your child. Eat plenty of fruit and vegetables balanced with cereals such as rice and bread as well as protein sources including eggs meat and fish. Healthy snacks include nuts muesli bars and dry biscuits. Friends and family can help by providing cooked meals which can be re heated at your leisure. Both hospitals have parent areas with microwaves available. Taking care of your diet will help ensure you receive the nutrition you need to stay healthy and strong for your child. The Sydney Children s Hospital Network has produced a range of factsheets relating to food food and nutrition. Please visit the following link http www.schn.health.nsw.gov.au parents-and-carers fact-sheets Food Safety 26 Drink Plenty of Water Keep your body properly hydrated by drinking six to eight glasses of water each day. This is especially important in the hospital setting where air-conditioning can cause dehydration. Allowing yourself to become dehydrated can cause annoying symptoms in the short-term such as headaches dry mouth and fatigue and lead to more serious health complications. Water is the best form of hydration. Try to avoid excessive consumption of caffeinated soft-drinks tea and coffee as these can stimulate urine production thereby causing further dehydration. Physical Exercise Regular physical exercise will not only help you stay fit and in shape it can also do wonders to keep your mood and energy levels high. Your exercise routine needn t be strenuous or complex it can be as simple as taking regular 20 minute walks around the hospital grounds or doing gentle stretches at you child s bedside. Even just getting out into the fresh air and sun to sit will have a positive effect. You might wish to get into the daily habit of doing an on-the-go workout www.realsimple.com which is designed to keep you fit regardless of your location or circumstances. Yoga you Can Do Anywhere www.womenshealthmag.com You could also consider causal gym passes at a nearby gym. EFM Gym Westmead offers casual gym memberships allowing you to use the gym equipment or participate in yoga zumba and bootcamp classes without an annual commitment. EFM Gym Westmead Hospital Cnr Hawkesbury and Darcy Roads Westmead NSW Email westmead efm.net.au Phone 0413 132 527 www.efm.net.au Women s Health Magazine Website Real Simple Website Efm Gym Website 27 Emotional Self Care The importance of emotional self care cannot be overstated. This section provides a few pointers to help you maintain emotional equilibrium throughout your hospital stay and beyond. Taking Time Out One of the best things you can do for yourself is to regularly take time out from caring for your child. This need only be for an hour or two or even just twenty minutes once a day. Take advantage of offers from friends relatives and hospital volunteers to sit with your child as often as you need. Taking a break to have a coffee with a friend pursue a fitness or leisure activity or just soak up a different environment will help you recharge putting you in a good mind frame to resume looking after your child. Try to put aside any feelings of reluctance and guilt you might have about leaving your child and remember that it is only for a short time. Also keep in mind that he or she will benefit from your renewed positivity if you allow yourself to take time out to refresh. If your stay is going to be longer than first expected you can request a ward granny who is a volunteer specifically assigned to your child who can be there when you re not. It will always be the same volunteer. Talking It Through Whilst it is important you refrain from burdening your child with any fears or concerns you many be experiencing it is also important that you don t suffer in silence. Rather than keep your feelings bottled up HeartKids NSW ACT strongly encourages you to talk your feelings through. This may be with your partner or a trusted friend with your HeartKids NSW ACT Family Support Coordinator or with a professional counsellor. There are also social workers and chaplaincy services available at both hospitals. Department of Social work at The Children s Hospital Westmead Phone 02 9845 2641 www.schn.health.nsw.gov.au parents-and-carers our-services social-work chw Department of Social work at Sydney Children s Hospital Randwick Phone (02) 9382 1021 www.schn.health.nsw.gov.au parents-and-carers our-services social-work sch If you require financial assistance to access professional counselling please contact HeartKids NSW ACT about our Caring Hearts program. Overwhelm & Burnout Overwhelm and burnout can occur when There seems to be too much going on There seems to be too much new information to keep track of There seem to be too many pressures and demands Dept of Social work Westmead Dept of Social work Randwick 28 There are a few things you can do to avoid or overcome overwhelm and burnout. Remembering the simple adage take one day at a time can prove enormously helpful as it can allow you to let go of any worries you may have about the future and just focus on the present moment. Employing strategies to calm your mind and also making sure you are realistic with yourself and others about what you can achieve at this time can ensure that your head remains above water. You may find the following articles and tips of interest www.psychcentral.com www.psychologytoday.com Psych Central Website Psychology Today Website Recognising Depression & Anxiety Keeping check of your emotions on a daily basis will help you to recognise and address depression and anxiety. Ask yourself How am I feeling today It is important that you are 100% honest with yourself and that you acknowledge your feelings as they are rather than as you believe they should be. Some of the symptoms of anxiety and depression include Persistent sad anxious or empty mood Feelings of hopelessness guilt or worthlessness Inability to derive pleasure from life Feeling slowed down or fatigued Difficulty making decisions concentrating and remembering Low appetite and weight loss or overeating and weight gain Irritability & restlessness Beyond Blue Website A more detailed Anxiety and Depression Checklist can be found at www.beyondblue.org.au Addressing Depression & Anxiety If you believe you may be experiencing depression or anxiety please see your GP as soon as possible. A list of GPs in the Westmead and Randwick areas can be found on pages 58 and 71 respectively. You can also access information and support from the organisations listed on page 77. B CARING HEARTS COUNSELLING SUPPORT The HeartKids NSW ACT Caring Hearts program provides financial assistance to help you access professional counselling support. For more information refer to page 40 of this section. Alternatively please speak to your Family Support Coordinator or contact Head of Family Support on (02) 9631 2600. 29 EMOTIONAL CARE FOR YOUR HEART KID You needn t feel helpless during your child s recovery. There are a number of things that you can do to lift his or her spirits and help them along the path of recovery. 30 The Power of Positivity Many studies have illustrated that people with an optimistic outlook can recover faster and more fully so encouraging your child to think positively is a good start. Discussing realistic plans for the future while your child is in hospital can help them to visualise themselves well and active again. Plans needn t be as grandiose as a visit to Disney Land simply talking about fun daily activities such as playing with the dog swinging on the playground swing or riding a scooter can help your child start to realise that life will return to normal in due course. Also it may help to remind your child from time to time that this period away from normal life is a necessary step to help them to get better and that it is indeed only temporary. Academic Engagement It is a good idea to keep abreast of what your child s teachers are planning to cover in the classroom during the period your child will be away. Whilst your child is unlikely to be in a position to do structured homework or assignments during their recovery they may enjoy learning in an undemanding way via online videos and audio books. Keeping your child somewhat engaged in educational activities might help to keep them in a positive frame of mind as they focus their thoughts away from their illness and onto subjects that their peers are studying. Not only can it be a positive and stimulating experience for your child during their recovery it can help make the transition back to school life easier. The important thing as a parent is to recognise what your child can handle and to work with their energy and concentration levels which may vary from day to day. Some days your child might be able to enjoy a full hour of passive learning whereas the next day their limit could be only five minutes. Many educational videos and tools can be sourced over the internet or ask your child s teachers for guidance. The following websites provide a good starting point for your search. Be sure to always supervise your child s use of the internet. www.splash.abc.net.au www.healthyactivekids.com.au www.studyladder.com.au www.watchknowlearn.org If your child is going to have a longer stay than expected they can attend the hospital school. Ask your nurse or NUM to contact the head teacher. Splash Website Healthy Active Kids Website Study Ladder Website Watch Know Learn Website 31 School Peer Support HeartKids NSW ACT has developed a program called HeartClass for Kids which seeks to promote social inclusion support and empathy for K-6 school children with CHD. Please view the website at the link below and read the section For Parents to find out how to get the program into your child s school. www.heartclassforkids.com.au Heart Class for Kids Website Erecting a Fear Filter It is normal for family and friends to fear the worst when a child is about to undergo heart surgery. Some people are especially good at keeping these fears at bay and expressing genuine optimism that serves to reassure the heart kid that everything will be Okay. Others however maybe full of very good intentions but find it difficult to keep their own fears from being seen and heard. As the person who will be at your child s side throughout this milestone experience it is important that first of all you recognise what your own tendency is. Are you naturally good at putting on a brave face Or do you find you become too overwhelmed by doubts and worries to properly be a source of strength for your child If the latter is the case don t feel bad or guilty about it we re here to help. The Family Support team at HeartKids NSW ACT can personally talk you through some strategies to stay strong. We can also help you access a professional counsellor as part of the Caring Hearts program. Please contact 02 9631 2600. In addition to keeping fears that you or others have about your child s impending surgery from burdening your child it falls upon you to protect them from any other day-to-day worries. It is wise to avoid allowing your child to hear you or others around you discuss issues that could cause them serious worry or confusion at this time such as financial issues relationship or work issues. You can affectively put up a fear filter to protect your child s emotional wellbeing by doing your best to keep anxious conversations and expressions of worry doubt and fear out of earshot of your child. This will help ensure that your child is properly able to use his or her energy to the full in their own important recovery. Seeking Professional Help If at any stage you feel that your child is not coping emotionally please bring this to the attention of your child s attending doctor. The scales may seem out of whack you re miles away from home a world away from the warmth of your spouse and other children and all of your attention by necessity must be focused upon your heart kid. Yet it is still possible to maintain your centre and to strike a happy balance with the other key people in your life. 32 THE HEART BEADS PROGRAM Heart beads help enrich the experience of cardiac patients in children s hospitals around the country. Patients receive a distinctive bead for each procedure treatment or hospital stay and can then trace their unique journey through the string of beads. Heart Beads is a program that was started at the Heart Centre for Children in 2008. Upon attendance at pre-admission clinic or admission to the ward you will be given a brochure regarding the program and the opportunity to enrol and begin your Heart Beads journey and you will receive a Heart Beads package with your child s name and date of birth already strung and ready to go. For each procedure treatment good and bad day and other milestone there is a unique bead which will be given to you to add to the string. The beads are a great way to trace your child s hospital journey. They provide a tool for children and families to be able to talk about the illness and experience and to reward your child for their courage 33 CARING FOR YOUR OTHER RELATIONSHIPS In the role of a carer it can be easy to focus solely on your sick child to the detriment of your other relationships. With just a little bit of mindfulness you can work to keep harmony in all your important relationships so that your family holds together as a source of strength for one another. 34 Keep Regular Contact Perhaps the best way to make sure your relationships with your spouse partner and other children are not impacted by the strain of physical absence is to stay in regular contact via phone and Skype. A good way to do this is to set a daily time for a family call for example at 7.30pm after dinner. This way everyone knows when to expect to connect together and can look forward to the call Skype chat. Following on from the last section it is best to discuss any serious concerns you have whether they be about your heart kid s health or an unrelated issue with your spouse in private at a different time. Focus on Connecting While they may seem obvious the following suggestions have been provided to help you to remain emotionally connected with your spouse partner and other children during your absence. Remember if you put real effort into showing your loved ones that you are genuinely interested in them and their current experience and there for them despite the distance it will pay off with a deeper sense of togetherness . Your Relationship with Your (Non-Heart Kid) Children When caring for a sick child it can be easy to allow that person to take up 100% of your focus. However keep in mind that your other children are also feeling the roller coaster of emotions that the CHD journey brings and also require some of your energy and affirmation. Here are some pointers to help you in conversing meaningfully with your children who are continuing on with life at home. Ask them about their day What did they do at school Who did they play with Take a mental note of anything new or out of the ordinary. Pay attention to their tone of voice Where you detect excitement or enthusiasm gently probe them to talk more about it. Ask questions that follow on from your last conversation For example if your son mentioned yesterday that he started a project at school ask if he did any more on the project today if so what Celebrate and applaud your child s achievements These may be as obvious as doing well on a test or as seemingly insignificant as eating all their dinner or making their own lunch for school. Recognise and seize as many opportunities as possible to celebrate the good things that are happening if your child s development and daily life. 35 Refrain from nagging if you detect your child is down Of course as a parent you have a duty to instill good behavior in your children. That said it s important that you keep in mind that your child may be out of sorts at the moment. He or she may be missing you missing their heart kid sibling worried about their recovery or worried about an entirely different matter. So if your child is doing something that requires a stern word just try to keep the issue in perspective and balance your severity with a sense of gentle empathy. Ask if they are OK If you sense your child is down encourage them to open up about their feelings. If they are reluctant to talk and you are still concerned perhaps there is another trusted adult who you feel they would be happier talking to at this time. Perhaps try to organise for this person to spend some time talking with your child. If your child is 12-18 you could suggest they visit Headspace.org.au for information and advice. Don t downplay your child s problems As an adult it can seem silly to worry about things such as not being invited to a classmate s birthday party or a broken favourite toy when one s sibling is undergoing heart surgery. However if these are the kinds of concerns that are plaguing your child take it on board that these are real concerns for them at present. It is possible to make your child see that their problem doesn t signal the end of the world without undermining their own sense of what is important. Often petty concerns can mask deeper ones. So if your child seems nonplussed about their sibling s operation but disproportionately upset about the little things it might just be an indication that deep down they are actually worried. Reassure them that you ll all be home soon ...and that life will continue more or less as normal. Discuss future plans ...that the family have made together such as a holiday away or an upcoming Easter or Christmas break. Let them know you re proud of them for coping without you Tell them that they are learning positive skills that will serve them for life such as resilience and self-reliance and that you are proud of them for taking up the challenge of getting on with things. Remind them you love them ... and will always be there for them even when at times you re required to be apart. 36 Your Relationship with your Spouse Partner Much of the same advice offered above can be applied to your relationship with your partner spouse. The key is to show genuine interest and regularly affirm your love and affection in words. Be diligent to make time to communicate. If at all possible organise for someone to attend to your child and other children so that you can spend even just a couple of hours away from the hospital together for a coffee dinner a movie or a stroll through a local park. It may seem that time together cannot possibly be justified taking into account all that is going on however in many ways the opposite is true. Now more than ever you and your partner need to be a strong unit and putting in the effort to connect as a couple will be the glue that helps bond you. Your Larger Circle of Friends & Family There are some people within your circle that you may want to speak with often and others who will fade into the background of your thoughts during this period. That is OK. Most reasonable people will try to put themselves in your shoes and will understand that your focus is on your child. Don t feel guilty if you cannot respond to every text message Facebook message and email from friends and family at this time. It is likely that many people will be thinking of you and wanting to wish you and your heart kid well. However concerning yourself too heavily with the courtesy of a reply might leave you exhausted. You may need to employ strategies to keep well-wishing friends and extended family informed so that you don t become bogged down with replying at length to every message requesting an update on your child s progress. Strategies include Put a message on Facebook saying thanks for the support and that you will be posting a daily update on your child s progress and recovery. Mention that you may not be able to respond to personal messages at this time due to your caring obligations. Alternatively perhaps start a private blog which you can invite friends and family to join. You can post updates as they happen to keep everyone in the loop. One of the most popular free blog tools can be found at www.wordpress.com Delegate one friend family member as the news bearer. You can provide updates to this person only who will then give word to your other friends and family members. Wordpress Website 37 CARING HEARTS PROGRAM Our Caring Hearts support program provides financial assistance for you to access professional support such as the Access to Psychological Services program (ATAPS) or Better Access to Mental Health program as recommended through your GP. It s more common than you might think to take this extra step for support and when you do it s often surprising how beneficial it is. HeartKids is here to help you. What We Will Do HeartKids NSW ACT will pay up to 50 of out-of-pocket expenses per treatment up to a maximum of 300 per family for the first 6 treatments. Expenses can be claimed individually or at the completion of treatment. What You Need to Know All six treatments are to be completed within 12 months of the date of the first treatment A copy of the Medicare receipts showing out of pocket expenses are to be attached to the claim Your claim must be submitted within two years of the date of your child s major surgery or diagnosis You must be a HeartKids NSW ACT member with a heart kid 18 years or younger at the time of application Only one claim per family GPs need to have completed a Mental Health Treatment Plan in conjunction with a mental health outcome measurement tool prior to referring patients to ATAPS HeartKids will use its discretion when considering applications for support outside of these criteria The Caring Hearts Claim form can be found on page 77 at the end of this booklet. 38 39 40 RETURNING HOME FROM HOSPITAL Being Emotionally Prepared Your Feelings about Going Home While you may be excited to finally be discharged it is also natural to feel a little bit anxious as you will now be responsible for your child s care without the medical team s assistance. The best way to get on top of any worries and to begin feeling confident is to make sure you understand what will be required of you when you get home. Ask Questions Soon before you leave the ward you will be given a nursing discharge summary detailing your follow-up medication and appointment. Don t be afraid to ask questions at this time. Your Child s Behaviour You may notice that your child isn t quite his or her normal self when they return home from hospital. This is likely to be because his or her routine has been upset. During this time you need to support and reassure your child that everything should be back to normal in a few weeks. If you Start Feeling Alone For some people returning home can make them feel removed from the caring and supportive hospital environment and somewhat isolated. If you begin to feel isolated and alone it is important that that you reach out for support. Here are some ways to do so Join the HeartKids NSW facebook community here you will be able to connect online with others who have gone through a similar experience as well as find out about upcoming social events www.facebook.com heartkidsnsw Contact the HeartKids NSW Head of Family Support on (02) 9631 2600 for information about how the charity can help. HeartKids NSW Facebook 41 CONCERNS ABOUT YOUR CHILD S HEALTH If you have any concerns about your child s health when you are home call the hospital and ask to speak to your child s Cardiologist Cardiac Nurse or the Cardiac Fellow on call. If your concerns relate to a life-threatening or emergency situation call 000 for an ambulance. Healthdirect Australia - 1800 022 222 Healthdirect Australia is a 24-hour telephone health advice line staffed by registered nurses to provide fast and simple expert advice on any health issue and what to do next. Healthdirect Australia can be used when someone is sick and you re not sure what to do you want expert advice about a health issue and what to do next you need to know where to find after-hours health services or pharmacies Health Direct Australia For more information visit www.healthdirect.org.au REGIONAL OUTREACH SERVICES Paediatric Cardiology clinics are located in major regional towns at different times of the year. Depending on your location clinics may be available monthly to biannually. Depending on your child s history and condition at the clinic your child s Cardiologist may evaluate your child s heart function by conducting an Echocardiogram or they may only have a conversation with you about how you are feeling. For information about the next clinic near you please contact The Heart Centre for Children on 02 9845 2345. 42 THE BAKER FAMILY Newcastle NSW The La c h l an in hospi tal i r fam Bake da ly to y Lachlan was born at Westmead Hospital however due to the complexity of his condition he was immediately transferred to The Children s Hospital (at Westmead). After staying in hospital for a couple of weeks we were finally allowed to return home. When Lachlan was only four weeks old we had to return to Sydney for Lachlan s first Cardiac Catheter. This was the beginning of multiple procedures and surgeries. I did not feel prepared for the experience and I found it overwhelming. However I did feel confident in all of the information that I had received from the treating doctor with regard to what to expect from the surgery. Lachlan has since undergone countless more procedures and will require surgery regularly for the rest of his life. Though we still live with a lot of uncertainty we have adapted well to living with Lachlan s CHD and no longer find the hospital experience overwhelming. My best advice to other families going through the CHD journey is to remain positive and always show that positive attitude to your children they absorb so much of our emotions and feelings. By presenting a strong and positive attitude to them (showing that we trust the medical teams telling them how strong and brave they are how clever our special doctors are etc) it helps strengthen both you and your child mentally and physically for the challenges to come. Allison Baker Lachlan s mum 43 UNDERSTANDING THE HOSPITAL SYSTEM The complex world of hospitals can seem daunting to those who haven t been around them before. Yet with just a little bit of knowledge about how things work you can feel confident that you understand the system enough to have your and your child s needs properly met. 44 The Sydney Children s Hospitals Network You may hear reference to The Sydney Children s Hospitals Network during your time at either The Children s Hospital at Westmead or Sydney Children s Hospital Randwick. The Sydney Children s Hospitals Network is an alliance of six key children s health orgaisations which formed a partnership in 2010 with the mission to improve the health and wellbeing of children through clinical care research education and advocacy. The Sydney Children s Hospitals Network incorporates The Children s Hospital at Westmead Sydney Children s Hospital Randwick Bear Cottage the Newborn and paediatric Emergency Transport Service (NETS) the Pregnancy and newborn Services Network (PSN) and the Children s Court Clinic For more information about the Sydney Children s Hospitals Network please visit www.schn.health.nsw.gov.au The Sydney Children s Hospital Website Hospital Factsheets Carers NSW have put together a wonderful series of factsheets that provide information about different aspects of the hospital system which you may find helpful. Factsheets include The hospital ward - how it works day-to-day Medical staff in hospitals - what they do what the difference is between a Registrar and GP for example Allied health staff in hospitals Nursing and other staff in hospitals Carers NSW Fact Sheets These informative factsheets can be downloaded by visiting www.carersnsw.org.au Your Family s Rights The Sydney Children s Hospitals Network is committed to providing family centred care. The Network supports the rights of children who are patients their families and staff. Their publication concerning your family s rights at hospital can be accessed by visiting www.schn.health.nsw.gov.au family rights The Sydney Children s Hospital Family Rights 45 THE CHILDREN S HOSPITAL AT WESTMEAD 46 Overview The Children s Hospital at Westmead provides quality care and clinical services to sick and injured children. It is the largest paediatric centre in NSW and provides excellent care for children from NSW Australia and across the Pacific Rim. Specialist care is provided to children within a positive caring and healing environment. The hospital s clinical expertise community education advocacy for improved child health and ground-breaking research into childhood illnesses combine to make The Children s Hospital at Westmead a world-class institution. Contact details Phone (02) 9845 0000. Hawkesbury Rd & Hainsworth St Westmead Sydney NSW www.schn.health.nsw.gov.au Parent Handbook The Children s Hospital at Westmead Parent Handbook provides essential information for parents and families attending the hospital. www.schn.health.nsw.gov.au A guide to The Children s Hospital at Westmead Sydney Children s Hospital at Westmead Visiting Hours Parents and immediate family may visit the The Children s Hospital at Westmead at any time. Each ward has times other family and friends may visit. Ask a nurse on your child s ward about visiting hours for that ward. Note that most wards have a quiet time in the afternoons between 12.30pm and 2.00pm when children and infants sleep. Please respect other patients and families during this time. Parent Handbook Virtual Tour www.schn.health.nsw.gov.au take-a-tour-of-the-childrens-hospital-at-westmead Virtual Tour Floor Plans & Directory www.schn.health.nsw.gov.au chw_floor_plan_2013.pdf Hospital floor plan 47 HEART CENTRES & WARDS The Heart Centre for Children The Heart Centre for Children at The Children s Hospital at Westmead cares for kids with heart problems. The Centre maintains a committed focus on excellent clinical care and research. The Heart Centre for Children incorporates the Cardiology Department (Adolph Basser Cardiac Institute) Cardiac Surgery Department Kids Heart Research and Edgar Stephens Ward at The Children s Hospital at Westmead. The Heart Centre for Children has its own website www.heartcentreforchildren.com.au where you can read comprehensive information about cardiac (heart) services provided to children at The Children s Hospital at Westmead. The Heart Centre for Children provides Paediatric cardiology for inpatients and outpatients Paediatric cardiothoracic surgery Congenital Heart Clinic both paediatric and adolescent Outreach services NSW Fetal Cardiac Service Family support including psychological care for patients and families Heart Centre for Children Website 48 Investigations include Ambulatory BP Monitoring Cardiac catheterisation Electrophysiology Electrocardiography (ECG) Echocardiography Fetal echocardiography Holter monitoring Stress exercise testing Blood gas estimation for perfusion Electrolyte estimations for perfusion Cardiac physiological and perfusion services Specialist paediatric cardiac biomedical services Patient support services including cardiac clinical nurse consultants psychologists and social workers The Heart Centre for Children provides Fetal Cardiology Clinics Paediatric Cardiology Clinics Senior (Adolescent) Congenital Heart Clinic Pre-admission (Surgical) Clinic Pacemaker Clinic Long QT Syndrome Clinic Outreach services Contact details Enquiries (02) 9845 2345 Fax (02) 9845 2163 Location Diagnostic Services building Level 3. The Paediatric Intensive Care Unit PICU The Paediatric Intensive Care Unit is a 21-bed unit providing supportive care to approximately 1150-1200 infants and children each year. This support may include mechanical ventilation extra-corporeal life support (ECLS) renal replacement therapy (RRT) as well as high-level invasive and non-invasive monitoring. Patients may be admitted following surgery (including cardiac surgery neurosurgery liver or renal transplant) or with a range of other conditions such as trauma burns or severe medical conditions. The Unit provides intensive care facilities for children from all over NSW (and interstate and overseas if required). Contact details Phone (02) 9845 1995 Fax (02) 9845 1993 Location Intensive Care Unit Ward Street level 3 49 Neonatal ICU The Grace Centre The Grace Centre is a Neonatal Intensive Care Unit which specialises in caring for newborn babies with complex medical conditions often requiring surgery. While the neonatal period is defined as the first 28 days of life the Centre sometimes cares for older babies who may have serious conditions particularly if they have been born prematurely. Grace Centre is co-located and works closely with the NICU at Westmead Adult Hospital where women whose babies have been identified with birth defects are referred for delivery to enable early transfer to Grace. The Centre enjoys a close working relationship with the Paediatric Intensive Care Unit (PICU) at The Children s Hospital at Westmead and other units within the Sydney Children s Hospitals Network. Over one hundred staff are employed to care for 24 babies at any one time. The Centre is currently funded to have nine ventilator beds and 15 High Dependency beds. The nursing and medical staff are supported by a multidisciplinary team which includes lactation specialists occupational and speech therapists physiotherapists social workers clerical and administrative staff. The Centre has a strong research program aimed at improving the outcomes of babies admitted to neonatal intensive care and measuring the development of babies who have been operated on in the crucial first 90 days of life. The Grace Centre for Newborn Care incorporates the Department of Neonatology Newborn Intensive Care Unit Newborn High Dependency Unit Neonatal Research Group and the Newborn Follow-up Clinic and provides Newborn intensive care Neonatal education Follow-up clinic for high-risk newborns Research Contact details Phone (02) 9845 2715 Fax (02) 9845 2251 Location Level 3 Diagnostic Services Buliding. The Edgar Stephan Ward (ESW) The Edgar Stephan ward is the principal ward for cardiac heart patients for heart patients. The ward has 20 beds. 50 51 HOSPITAL FOOD & FACILITIES The Children s Hospital at Westmead has a number of onsite services and places to eat for the convenience of families staff and visitors. You can also read more about food and nutrition in hospital and guidelines for bringing food into the hospital. Bear Bite Eatery Opening Hours 7.00am - 8.00pm 7 days. Level 1 at the bottom of the ramp. A variety of hot foods salads sandwiches sushi drinks fruit snacks some grocery items newspapers magazines and Telstra phone cards (including Phone Away cards). Bear Brasserie Caf Opening Hours 8.00am - 7.00pm Monday - Friday Level 2 at top of the ramp. A variety of cafe style meals and beverages and is licensed. Kidz Corner Cafe Opening Hours 6.30am - 5.00pm Monday - Friday. Hainsworth St near the Children s Medical Centre. A variety of cafe style meals sandwiches drinks and confectionery Starbucks Opening Hours 6.30am - 11.00pm Monday - Friday 7.00am - 10.00pm Weekends. Level 2 near the Main Entrance. Specialises in coffee and other beverages also has selection of snacks and some Starbucks merchandise for sale. The Volunteers Snack Trolley A variety of snacks and drinks can be purchased from the Volunteers Snack Trolley which visits all wards every weekday morning (except on Public Holidays). Vending Machines Snacks drinks and other items such as toiletries are available from vending machines located throughout the hospital. There are also a number of cafes subway etc 300m from the hospital. Sibling Care Centre For a small fee the Centre can provide child-minding for the brothers and sisters of children who are in Hospital the Emergency Department or are at a clinic appointment days. It is staffed by trained volunteers. Opening Hours 9.00am - 3.00pm Monday - Friday 10.00am - 2.00pm most weekends. Closes on Christmas Eve and re-opens at the beginning of February each year. Bookings Phone the Volunteer Service on 02 9845 3840. Hospital Pharmacy Dispenses hospital prescribed medications for inpatients and some outpatients. Located on Level 2 (near the Parents Hostel). Opening Hours Monday to Friday from 9am - 4.30pm. 52 Internet Access There are two Internet terminals situated on the ground floor opposite the Bear Bite Eatery. There is a small fee charged to use these terminals. You can also access the internet at the parent Resource Centre on the 2nd floor. Parent and Carer Resource Centre The Parent and Carer Resource Centre is an initiative of the Carer Support Program. The Centre has been designed by parents for parents. It provides a non-clinical homely environment where parents and carers can take a break. The Centre is staffed by a team of fantastic volunteers who are dedicated to providing a friendly atmosphere and a listening ear. Free services available A peaceful place to relax light refreshments daily newspapers and magazines computers with internet access a kind volunteer to chat to and access to the Driver Reviver Room. The Carer Wellness Program provides parents and carers and staff who are carers with activities such as yoga massage therapy reflexology and beauty therapy. These activities are provided by fully qualified and insured therapists who volunteer their time and skills to support parents and carers. All activities are free of charge and are held at The Children s Hospital at Westmead. Some activities require booking for an appointment time. Kids Health Bookshop Kids Health is the information and resource centre of The Children s Hospital at Westmead. There is a wide range of publications and fact sheets for parents children professionals and the community in general. All publications available in the bookshop have been reviewed by a relevant hospital staff member. The bookshop is owned and staffed by the Hospital with all money generated from book sales contributing to the care of sick kids. Hospital School The Children s Hospital School operates on a flexible approach to best meet the needs of the students attending the school. The school has a high school classroom catering for Yrs 7 to 12 and a Primary classroom catering for Kindergarten to Yr 6 students. Teachers will also visit your child at their bedside if they are too sick to attend the classroom. Personalised Learning and Support Plans are formulated for all students with a hospital stay of over five weeks. The plans are negotiated amongst the student their parents caregivers hospital school staff and census school staff. Hospital Medical teams have been very supportive of the plans which facilitate better coordination in the timetabling of lessons and medical treatments to provide best educational outcomes for the student. Aboriginal Health Education Officer (AHEO) The AHEO helps families access support services and resources at The Children s Hospital at Westmead and in the community. The AHEO is a person available to talk to about any problems or concerns you might have. They can help with arranging a place for you to stay while your child is in hospital. They can also help organise transport for people from the country and sometimes for people who live locally. If you would like to see the AHEO while you are at The Children s Hospital at Westmead just ask a hospital staff member to contact the AHEO for you. Alternatively you can visit the Social Work Office and make an appointment. The AHEO is based in the Social Work department on Level 1 Opening Hours 8.00am 5.00pm Monday - Friday. 53 Laundry A coin-operated laundry is available for parents to use. It is located on Level 1 at the far end of the corridor. You will need 1 coins for the washing and drying machines and 2 coins for the washing powder dispenser. Banking Services A 24-hour Multi-card ATM Westpac ATM and ANZ atm are located on Level 2. Chemist Shop Opening Hours 8.30am to 5.30pm Monday to Friday. It offers a full pharmacy service gifts personal items stamps and phoneaway cards . It is located next to the Volunteers Shop on Level 2. Phone (02) 9689 2999 or extension 50551 from within the Hospital. Chaplain & Worship Rooms The Quiet Room is for prayer reflection meditation and services of worship. It is open 24 hours. Hospital prayers to which all are invited are conducted in the Quiet Room each weekday morning at 10.00am. Mass is conducted at 12.30pm each Friday. Chaplains may be contacted through the Switch. Tel 02 9845 000 during normal hours and are available in emergencies outside these hours. Each Ward has details of the chaplains routinely visiting there. The chaplains brochures are available in each ward. Sacraments eg baptism are available on request. Breastfeeding Rooms Comfortable baby change rooms and for breastfeeding are available on Level 2. Getting There From Forster Taree Port Macquarie Coffs Harbour Gosford Wyoming Lakehaven Erina Lake Macquarie Barrington Tops Newcastle Maitland Armidale Travel Duration & Distance Distance 310 km 306 km 381 km 527 km 72 km 75 km 102 km 77 km 125 km 320 km 157 km 160 km 470 km Driving Time (Approx.) 3 h 20 min 3 h 20 min 4 h 5 min 5 h 50 min 1 h 6 min 1 h 9 min 1 h 21 min 1 h 11 min 1 h 39 min 5 h 21 min 2 h 1 min 1 h 56 min 5 h 32 min From Tamworth Lismore Ballina Orange Bathurst Dubbo Wagga Wagga Bega Griffith Broken hill Canberra Cooma Albury Distance 401 km 732 km 737 km 232 km 177 km 368 km 352 km 498 km 908 km 1 122 km 279 km 388 km 546 km Driving Time (Approx.) 4 h 36 min 8 h 7 min 8 h 13 min 3 h 12 min 2 h 32 min 4 h 39 min 4 h 39 min 5 h 29 min 10 h 3 min 12 h 26 min 3h 4 h 12 min 5 h 27 min 54 Travelling By Car If you are driving follow the major routes from Penrith Hornsby Windsor Liverpool or Sutherland. Travelling By Train From the Blue Mountains and west (Lithgow) change at Penrith Parramatta or Blacktown. From north and central coast change at Strathfield. From the south coast change at Central. From the south-west (Moss Vale Campbelltown) change at Granville. Parking Paid Parking A multi-story parking complex is located on Hainsworth Street. To reach the carpark follow Hawkesbury road around the corner (right) to the roundabout. The carpark entrance is on the left exit from the roundabout. The parking fee is determined at the auto pay station prior to returning to your vehicle on exit. The auto pay stations accept coins and notes up to 50 or credit cards and provide change as appropriate. Depending on your family s circumstances you may be able to get a reduced weekly parking rate and or a frequent flyers rate. See the Social Work team or the NUM of the ward for more information. Timed Casual Fees 0-1 0-2 0-3 0-4 0-5 0-6 0-7 Hours - 5 1-2 hours - 8 2-3 hours - 11 3-4 hours - 13 4-5 hours - 15 5 hours - 17 Pre-pay 17 (unlimited same day entry & exits) Emergency Parking Located at the main entrance to the hospital and controlled by the Concierge in normal working hours. Free Parking (most street parking limited to 2 hours) Westmead - Hawkesbury Rd Caroline St Helen St Jessie St and Hainsworth Street. Northmead - Redbank Rd Beamish Rd Brelogail Bevan and Balfour Streets. Parramatta Park - parking bays located in Parramatta Park (entry via bottom end of Hainsworth Street). Mobility parking Vehicles parking in these spaces must display a current Mobility Parking Permit issued by the Roads & Traffic Authority (RTA) to be eligible to park in these locations otherwise an infringement notice could be issued. 55 LOCAL CONVENIENCES Just four kilometers from The Children s Hospital at Westmead satellite city Parramatta is the lively commercial hub for Greater Western Sydney. This historic riverside precinct boasts a vast array of eateries and independent retail outlets as well as a Westfield housing most major brands and an Event cinema. St George 244 Church Street Parramatta Phone 13 33 30 Bendigo Bank 198 Church Street Parramatta Phone (02) 8833 9800 Cnr Church St & George St Parramatta Phone (02) 8833 1900 Suncorp - Westfield Parramatta 3 159 -175 Church St Parramatta Phone 13 11 75 Shopping Coles Turn right at the intersection of Hawkesbury Rd and Darcy Ave and continue for 500 metres. Westfield Parramatta www.westfield.com.au parramatta Laundromats Westmead Coin-Op Laundrette 1 74 Hawkesbury Rd Westmead Phone (02) 9635 1184 Parramatta North Laundrette 1 Iron Street North Parramatta Phone (02) 9630 7676 Post Offices Westmead LPO Westmead Hospital Shop 206 166-174 Hawkesbury Rd Phone (02) 9635 8140 Parramatta CBD Post Office 57 Macquarie Street Parramatta Phone 13 13 18 GPs Bulk billing Parramatta Medical Centre Shop 2 Entrada Building 20 Victoria Rd Parramatta 2150 (Cnr Victoria Rd & Church St) Opposite McDonalds Phone (02) 9762 1041 Monday Friday 7 8am 7pm Saturday Sun 9am 3.30pm Argyle Street Medical Centre - Westfield Parramatta Shop 13 Cnr Argyle and Marsden St Parramatta Phone (02) 9893 8733. Monday Friday 8.00am - 6 30pm Saturday Sunday 9.00am - 5.00pm Banks Westpac Shop 10 163-171 Hawkesbury Rd Westmead Phone (02) 8836 1966 Westpac ATM Locator www.westpac.com.au locateus Commonwealth Bank of Australia Westfield Parramatta 159-175 Church St Parramatta Phone 13 22 21 149 Hawkesbury Road Westmead Phone 13 22 21 NAB - Westfield Parramatta Level 2 159-175 Church St Parramatta Phone (02) 8835 3197 ANZ Westfield Parramatta 159-175 Church St Parramatta Phone (02) 9683 9999 Bankwest - Westfield Parramatta 159-175 Church Street Parramatta Phone 13 17 19 Late Night Pharmacies Gardiner s Pharmacy 1 460 Church St North Parramatta Phone (02) 9630 3691 8.30 9.00am-10.00pm everyday ChemSave Day & Night Chemist Wentworthville 118 Station St Wentworthville Phone (02) 9631 4005 Monday - Friday 8 30am to 10 30pm Saturday - Sunday 8 30 - 10 30pm Public Holidays 8 30am - 10 30pm Gyms EFM Gym Westmead Hospital Cnr Hawkesbury and Darcy Rds Phone 0413 132 527 www.efm.net.au club westmead 56 PUBLIC TRANSPORT You can catch one of a handful of buses headed for either Parramatta or Westmead Stations from just outside The Children s Hospital at Westmead or a short walk away at the Hospital T-Way Westmead. To get to the city simply catch any number of city-bound trains from Parramatta or Westmead Stations. Buses to Parramatta Train Station Route 711 Blacktown to Parramatta via Wentworthville service. Bus stop The Children s Hospital at Westmead Westmead Route T60 Castle Hill to Parramatta via Crestwood Winston Hills & North-West T-way service. Bus stop Hospital T-Way Westmead (approx. 680 meters walk) Route T63 Rouse Hill Town Centre to Parramatta via North-West T-way & Westmead service. Bus stop Hospital T-Way Westmead (approx. 680 meters walk) T65 Rouse Hill Town Centre to Parramatta via North-West T-way service. Bus stop Hospital T-Way Westmead (approx. 680 meters walk) Bus to Westmead Station 711 Parramatta to Blacktown via Wentworthville service. Bus stop The Children s Hospital at Westmead Westmead. Alight Opposite Westmead Hospital T-Way Westmead (Stop 2145560). Walk approximately four minutes to arrive at Westmead Station Trains Trains depart regularly from Westmead Station and Parramatta Station to the city. Visit www.sydneytrains.info for timetable information. Train Timetables Plan Your Trip Online Perhaps the easiest way to find out how to get where you want to go via public transport is to use the online trip planner. Simply type in your starting point and destination and what time you wish to travel or arrive and the most suitable travel options will be calculated for you. www.transportnsw.info Purchasing Bus Fares Opal Card At the time of writing the Opal Card is slowly being phased in. The Opal card is a pre-purchased card that stores your travel credit. You tap on when you board and tap off prior to leaving the arrival train station and your correct fare is subtracted. You can purchase an Opal Card at most newsagents and supermarkets. A list of local purchase outlets can be found at www.retailers.opal.com.au You can also learn more about or purchase your Opal Card online by visiting www.opal.com.au Plan your trip online Purchasing Bus Fares 57 MyBus Tickets MyBus tickets can be purchased from most newsagents and supermarkets. Other valid tickets for travel on a bus include MyMulti tickets some Day passes and Link tickets special events concessions for children student family pensioner senior and other discounted fares including Pensioner Excursion Tickets and the Family Funday Sunday deal. For more information please visit www.transportnsw.info tickets bus MyBus tickets Purchasing Train Fares Opal Cards can be used to travel on the Sydney metropolitan rail network. Alternatively single trip or return train tickets can be purchased from the train station as can MyMulti Day Passes which allows unlimited travel on Sydney Trains NSW TrainLink Intercity services All government and private bus services All Sydney Ferries and Newcastle Ferries services All light rail services 58 THE BURNS FAMILY Singleton NSW The Jade i n hos pi tal B fami urns da ly to y Jade was diagnosed with Cardiomyopathy back in 1997. It was a sudden decision to transfer him from John Hunter to The Children s Hospital at Westmead for surgery. Because our experience was sudden we weren t prepared at all and it was a huge worry and pressure on the whole family. Our other kids stayed with my parents my eldest son was learning to drive and in his final years at school. The medical team at The Children s Hospital at Westmead were fantastic. We will forever be grateful for the compassion and love they gave to our little boy at the hospital. My advice to anyone going through a similar experience is to take up the offer for a volunteer to sit with your child so you and your partner can go and have a coffee and a meal. Half an hour out of the ward makes you calm and more focused. My son was given days to live when he was diagnosed with dilated cardiomyopathy in 1997 he is now a father of three boys he is a surveyor he is also a triathlete and extremely fit and healthy. He still sees the same cardiologist in Newcastle. Kim Burns Jade s mum 59 ACCOMMODATION There is range of low budget accommodation options available to regional families with a child undergoing treatment at The Children s Hospital at Westmead. Sleeping on the Ward Single sofa beds are provided free of charge at each child s bedside except in the Intensive Care Unit (ICU) and the Neonatal Intensive Care Unit (NICU). For these wards please see the Parents Hostel information. As space is limited at bedside there is room for only one parent to stay with each child on the ward. Ronald McDonald House Ronald McDonald House Westmead is a home away from home for families of seriously ill children being treated at The Children s Hospital at Westmead. At any one time 23 families can reside at the House in rooms that all have a private bathroom and that cater for both large and small family arrangements. To be eligible to stay in the House you must live 100kms or more from the hospital your sick child must be staying in the House with you or if they are being treated as in-patients there must be other siblings that require accommodation. Unfortunately RMH does not provide accommodation for adults only. While the House attempts to provide a room for all families travelling to Westmead for treatment there is a priority system in place based on (but not necessarily in this order) the size of the family distance travelled duration of the illness urgency of accommodation and room availability at the time. The cost is 60 per night. If you are eligible for Isolated Patients Travel & Accommodation Assistance (IPTAAS) (see page 9) there is no out of pocket expense. Ronald McDonald House Westmead Redbank Road Westmead NSW 2145 Phone (02) 9845 0600 Email rmh rmhwestmead.org. www.rmhc.org.au our-programs houses westmead Ronald McDonald House Parents Hostel Westmead The Parents Hostel on level two has a small number of basic rooms that can sleep up to two adults. There is a fee per room per night (between 22 & 44). If you are eligible for Isolated Patients Travel & Accommodation Assistance (IPTAAS) or have a health care card there might not be an out of pocket expense as the hostel will bulk bill. Priority is given to families with children in PICU and NICU. Except for breastfed babies the Parents Hostel is not able to accommodate your other children in the Parents Hostel. For more information phone the Parents Hostel on (02) 9845 2958. Wesley Apartments Wesley Apartments provides accommodation and support for the families of sick children at The Children s Hospital at Westmead. Wesley Apartments is a unique service comprising six times two bedroom apartments fully furnished with all the modern conveniences. The objective of the apartments is to provide a home-away-from-home to families facing a serious crisis. Families stay anywhere between two weeks and 13 months. 60 Facilities & Features Sleeps up to six people Two bedrooms queen two singles and pull out sofa bed Modern fully equipped kitchen Large private bathrooms with bath Private internal laundry with washer and dryer Air-conditioned Complimentary wireless internet access Private car space Flat screen televisions Parramatta Mission Cost 600 per week or 85 per night. If you are eligible for IPTAAS the out of pocket cost is around 25 per night. Phone 0478 401 334 Office hours Monday Friday 8.30am -12.30pm www.parramattamission.org.au Community-Services wesley-apartments Wesley Apartments Standard motel style of accommodation with maximum two people per room but can do interconnecting family rooms. Located opposite the adults hospitals at Westmead. Rooms cost from 165 per night. IPTAAS covers 60 per night for those who live more than 100 kms away. Phone (02) 9635 1233 Fax (02) 9893 7018 Email admin wesleylodge.com.au Reservations reservations wesleylodge.com.au 175 Hawkesbury Road Westmead NSW Ibis Budget Situated about seven minutes drive to the hospital Ibis Budget provides very basic small rooms that have a queen bed some with a single bunk overhead. Rooms start at 89 per night. IPTAAS pays 60 per night for those more than 100klm 377-383 Great Western Highway Wentworthville NSW Air BNB Website Stayz & Airbnb Both Stayz and Airbnb offer local accommodation at private apartments and houses. www.airbnb.com.au www.stayz.com.au Stayz Website B ACCOMODATION ASSISTANCE If you require further assistance to secure suitable accommodation please contact The Children s Hospital at Westmead s Accommodation Coordinator on (02) 9845 2958 or the Social Work Department on (02) 9845 2641. 61 SYDNEY CHILDREN S HOSPITAL RANDWICK 62 Overview Sydney Children s Hospital Randwick is one of Australia s leading specialist medical centres for children caring for seriously ill and injured children from across NSW and beyond. It forms part of the Sydney Children s Hospitals Network. Sydney Children s Hospital Randwick provides a complex and comprehensive range of services in paediatric and adolescent medicine and surgery treating children with conditions including cancer trauma HIV AIDS congenital abnormalities disabilities heart disease and respiratory disorders. Contact details Phone (02) 9382-1111 High St Randwick NSW 2031 www.schn.health.nsw.gov.au about-us about-sydney-childrens-hospital-randwick Sydney Childrens Hospital Randwick Parent Guide The Handy hints for your stay in hospital publication provides an array of useful information to assist you during your stay at the Sydney Children s Hospital Randwick. The guide can be found at www.schn.health.nsw.gov.au sch_handy_hints_english.pdf Handy Hints Visiting Hours Parents and immediate family may visit at any time. Please refer to the visiting times specified for your child s ward see page 66. Virtual Tour Virtual Tour www.schn.health.nsw.gov.au take-a-tour-of-sydney-childrens-hospital-randwick Hospital Floor Plan Floor Plans & Directory www.schn.health.nsw.gov.au guide_to_sydney_childrens_hospital_grounds_and_buildings.pdf 63 Paediatric Intensive Care Unit (ICU) The ICU receives children with all types of conditions requiring close specialised monitoring. The ICU is a 17 bed unit and admits over 1000 patients a year. Children in the ICU receive a much higher level of nursing and medical care. This ensures that any change in a child s condition is monitored and treated quickly. The ICU provides Comprehensive level 6 children s intensive care Clinical care for very sick infants and children Consultative service Visiting Patients in ICU Parents carers and immediate family may visit before 8.00am and after 10.00am. Ward rounds take place between 8am and 10am. As these ward rounds involve detailed discussion on individual patients in open areas of the ICU parents carers and visitors are asked to wait until ward rounds are finished before entering the ICU. Other visitors are permitted between 10.00am and 12.00 noon and again from 3pm. We ask that all visitors leave the Unit by 8pm. We also ask that visitors are restricted to three people at any time. Children are not permitted unless they are the sibling of a patient. Parents and carers are not able to sleep by the bedside in the ICU. Limited accommodation is available onsite in the ICU Hostel pre-booking is recommended. ICU Contact Details Phone (02) 9382 1156 Fax (02) 9382 1406 Location Ward C1 West level 1 Ward C1South Cardiac Renal and Infant Surgical Ward C1South ward is the principal ward for cardiac patients. Once stable patients will be transferred from ICU to the Ward to continue recovering from surgery. Ward Visiting Hours Parents and carers can visit their children at any time however as bedside space is limited we ask that your child receive no more than two visitors at a time. Regular Ward visiting hours for extended family and friends is between 8.00am and 8.00pm. 64 65 HOSPITAL FOOD & FACILITIES Sydney Children s Hospital Randwick has a number of onsite services and places to eat for the convenience of families staff and visitors. Cafes There are a variety of cafe s located at Sydney Children s Hospital Randwick and surrounding hospitals of the Randwick campus. The Sydney Children s Hospital Star Cafe provides delicious food for patients parents staff and visitors of the Hospital with all profits donated to Sydney Children s Hospital Randwick. The Star Cafe is located on Level 0 of the Sydney Children s Hospital Randwick. Opening hours Weekdays 6.30am - 5.15pm. Saturdays 8.00am - 2.00pm and Sundays 8 30am -2.00pm. Forecourt caf Located in the Campus Retail Centre at the Barker Street entrance. Opening hours Weekdays 7.00am - 7.00pm Other cafes on campus include Hudson s Coffee Level 7 Prince of Wales Private Hospital The Garden Coffee Shop Level 1 Clinical Sciences Buiding Prince of Wales Hospital. Pharmacy A retail pharmacy is located in the Barker Street Entrance Foyer opposite the Chapel. The pharmacy supplies all NHS PBS and discharge prescriptions. Opening hours The Pharmacy is open 7 days a week Monday - Friday 8.00am - 6.00pm Saturday - Sunday 10.00am - 4.00pm. 66 Chaplaincy Services Chaplaincy Services provides Pastoral care of children families and staff providing a listening ear prayer religious and spiritual guidance church sacraments. Anglican Catholic Presbyterian Uniting Church and Salvation Army Chaplains are based at the hospital. The Chaplaincy Service is able to assist in arranging contact with spiritual leaders of other denominations or other faiths. The Campus Chapel is located in the Barker Street Entrance Foyer next to The Prince of Wales Hospital Foundation opposite the pharmacy. A prayer room is available in the adjoining Royal Hospital for Women on Level 0. Child Life & Music Therapy The Sydney Children s Hospital Randwick Child Life and Music Therapy Department offers education and support of patients and their families through the provision of therapeutic play medical play procedural education and distraction techniques. Music Therapy addresses a child s physical emotional intellectual and or social needs through the medium of music. Interventions include singing familiar songs creative musical improvisation distraction songwriting and filming and editing music video s of original compositions. The contact number for Child Life Therapy is (02) 9382 6984. Music Therapy is (02) 9382 1533. Hospital School The Sydney Children s Hospital School is a Kindergarten to Year 12 School for Specific Purposes operating within Sydney Children s Hospital Randwick and is a joint venture between the Hospital and NSW Department of Education and Training. The school services patients enrolled in schools both public and private. Siblings of patients may also attend the Hospital School in consultation with the Principal. The School provides service in both primary and high school classrooms and across public private and adult wards. Meeting the challenges of ensuring equity continuity and normality for hospitalised students is an important focus and is fundamental to success of all students in the school. The school has multi-staged classrooms Kindergarten to Year 6 and Year 7 to Year 12 with additional multi-purpose rooms. A courtyard playground is used for outdoor activities and programs as well as for recess. Public Phones Public phones are available at the northern end of the main corridor on Level 0 and the Emergency Department of the Sydney Children s Hospital Randwick. 67 Getting There Travel Duration & Distance From Forster Port Macquarie Coffs Harbour Gosford Lakehaven Erina Lake Macquarie Barrington Tops Newcastle Maitland Armidale Tamworth Distance 312 km 392 km 538 km 83 km 111 km 87 km 136 km 258 km 168 km 171 km 481 km 409 km Driving Time (Approx.) 3 h 30 min 4 h 15 min 6 h 1 min 1 h 16 min 1 h 34 min 1 h 22 min 1 h 48 min 3 h 38 min 2 h 12 min 2 h 6 min 5 h 42 min 4 h 49 min From Lismore Ballina Orange Bathurst Dubbo Wagga Wagga Bega Griffith Broken hill Canberra Cooma Albury Distance 743 km 746 km 264 km 209 km 400 km 458 km 503 km 471 km 1 153 km 284 km 393 km 551 km Driving Time (Approx.) 8 h 21 min 8 h 28 min 3 h 37 min 2 h 57 min 5 h 6 min 4 h 44 min 5 h 33 min 6 h 10 min 12 h 54 min 3 h 2 min 4 h 13 min 5 h 29 min Travelling By Car If you are driving follow the major routes from Penrith Hornsby Windsor Liverpool or Sutherland. Travelling By Train Visit the following website for information on travelling to Sydney by train www.nswtrainlink.info timetables To get to Sydney Children s Hospital Randwick from Central Station go to platform 24 and catch the to Bondi Junction line all the way to Bondi Junction Station. Walk to Bondi Junction Interchange - Stand E (located just outside the train station) and take either the 400 or 410 bus to Randwick Junction. NSW Trainlink timetables Alternatively once you arrive at Bondi Junction walk to Newland St near Birrell St and catch the 418 bus to Randwick Junction. From here it is a short walk (approximately 500 metres) up Belmore Road to turn right at High Street and arrive at the hospital. Parking The hospital car park is open 24 hours a day 365 days of the year. Enter via the roundabout in Barker Street Randwick. Take the lifts at the back of the car park to Level 0. Enter the main doors of Prince of Wales Campus Centre. Signs will direct you to Sydney Children s Hospital Randwick. The car park is managed by Metro Parking phone (02) 9382 3400. Casual parking rates as of July 2014 (subject to change) 4.20 per half hour or part thereof 25.00 Maximum daily charge Five day visitor pass 75.00 5 day Concession (subject to approval) 26.00 68 LOCAL CONVENIENCES Featuring an array of grand historic buildings and home of the Randwick racecourse Randwick boasts a terrific locale with stunning Coogee beach just a stone s throw to the east and Centennial park and bustling Bondi Junction both just a short bus ride away. Randwick is eight kilometers from the city. Bankwest 75 Belmore Rd Shop 4 5 Royal Randwick Shopping Centre Phone 13 17 19 Bendigo Bank 222-226 Clovelly Road Coogee Laundromats Randwick Self Serve Laundry 183 Alison Rd Randwick NSW Phone (02) 9399 3378 Paradise Laundrette 116 Anzac Pde Kensington NSW Phone (02) 9662 1770 Shopping Royal Randwick Shopping Centre 73 Belmore Rd Royal Randwick Shopping Centre Phone 13 13 14 Eastgate Shopping Centre 71 73 Spring St Bondi Junction Phone (02) 9387 6377 Westfield Bondi Junction 500 Oxford St Bondi Junction Phone (02) 9947 8000 GPs - Bulk Billing Bondi Junction 7 Day Medical Centre Bondi Junction HCF building 1 Newland St opposite Oxford St Mall Phone (02) 9291 9888 Avoca Street Medical Centre 130 Avoca St Randwick Phone (02) 9399 3335 (No bulk billing Saturdays) Post Offices Australia Post - Randwick Post Shop 72b 73 Belmore Rd Randwick Phone 13 13 18 Australia Post Kensington Post Shop 168-170 Anzac Pde Kensington NSW Phone 13 13 18 Late night pharmacies Best Price Pharmacy Randwick 32 St Paul s St Randwick Phone (02) 9399 3560 Monday - Friday 8.00am to 10.00pm Saturday 9 .00am to 10 00pm Sunday 10.00am to 10.00pm Maroubra Medical Centre Chemist 806-812 Anzac Pde Maroubra Phone (02) 9314 0125 Monday - Friday 8.00am - 10.00pm Saturday - Sunday 8.00am- 10.00pm Public Holidays 8.00am - 10.00pm Bondi Day and Night Pharmacy 132 Campbell Pde Bondi Phone (02) 91304566 Monday - Friday 8.00am - 10.00pm Saturday - Sunday 8.00am -10.00pm Public Holidays 8.00am - 10.00pm Banks Westpac 49-51 Belmore Rd Randwick Phone (02) 9399 0277 ATM Locator www.westpac.com.au locateus Commonwealth Bank of Australia 22 Belmore Rd Randwick Phone 13 22 21 NAB 111 Belmore Rd Randwick Phone 13 22 65 ANZ Shop LG025 Quadrangle Building University of NSW Kensington Campus 2033 Phone 13 13 14 Gyms Fitness First Randwick Royal Randwick Shopping Centre 73 Belmore Rd Phone (02) 838 3710 www.fitnessfirst.com.au 69 PUBLIC TRANSPORT Plenty of buses travel frequently from Randwick Junction (450 meters from the hospital) to the city Coogee and Bondi Junction. The nearest train station is Bondi Junction. At the time of creating this resource a light rail is in planning which will travel between Randwick and the CBD. Buses to the City Route 372 Daily full time service between Coogee Carr St Randwick Junction Moore Park Surry Hills & Railway Square (CBD) Route 373 Daily 24 hour service between Coogee Carr St Randwick Junction Moore Park Darlinghurst & City - Circular Quay (CBD) Route X73 Prepay Only Monday to Friday peak hour express service between Coogee Carr St Randwick Junction & City Routes 372 373 & X73 Timetable www.sydneybuses.info routes 372_20110404_tt.pdf Metrobus M50 Prepay Only Metrobus M50 also operates between Coogee The Spot Central and the city. M50 operates approximately every 10 minutes during peak periods 15 minutes throughout the day and approximately every 20 minutes at weekends and other times. Sydney Buses Route 372 Getting to Bondi Junction Route 400 Prepay Only Daily full time limited stops service between Burwood Croydon Park Campsie Bexley. North Bexley Rockdale Banksia Arncliffe Sydney Airport Mascot Eastgardens Maroubra Junction Kingsford University of NSW Prince of Wales Hospital Randwick. Waverly and Bondi Junction Route 410 Monday to Friday peak hour limited stops prepay service between Rockdale Arncliffe Mascot Eastgardens Maroubra Junction Kingsford University of NSW Prince of Wales Hospital Randwick Waverly and Bondi Junction. Route 400 & 410 Timetable www.sydneybuses.info routes 400_20101128_tt.pdf Buses to Bondi Junction Route 313 Coogee to Bondi Junction via Randwick Carrington Road and Waverley. Routes 313 Route 314 Coogee to Bondi Junction via Randwick Junction and Waverley. 314 316 & 317 Route 316 Coogee to Bondi Junction via Randwick Junction and Waverley. Route 317 Eastgardens to Bondi Junction via South Maroubra Maroubra Beach South Coogee Randwick Junction and Waverley. Routes 313 314 316 & 317 Timetable www.sydneybuses.info routes 313_20131020_tt.pdf Bondi Junction Route 400 & 410 70 Plan Your Trip Online Perhaps the easiest way to find out how to get where you want to go via public transport is to use the online trip planner. Simply type in your starting point and destination and what time you wish to travel or arrive and the most suitable travel options will be calculated for you. www.transportnsw.info Purchasing Bus Fares Opal Card At the time of writing the Opal Card is slowly being phased in. The Opal card is a pre-purchased card that stores your travel credit. You tap on when you board and tap off prior to leaving the arrival train station and your correct fare is subtracted. You can purchase an Opal Card at most newsagents and supermarkets. A list of local purchase outlets can be found at www.retailers.opal.com.au You can also learn more about or purchase your Opal Card online by visiting www.opal.com.au MyBus Tickets MyBus tickets can be purchased from most newsagents and supermarkets. Other valid tickets for travel on a bus include MyMulti tickets some Day passes and Link tickets special events concessions for children student family pensioner senior and other discounted fares including Pensioner Excursion Tickets and the Family Funday Sunday deal. For more information please visit www.transportnsw.info tickets bus Transport NSW Opal Card Retailers Opal Card website MyBus Tickets 71 ACCOMMODATION There is range of low budget accommodation options available to regional families with a child undergoing treatment at Sydney Children s Hospital Randwick. Accommodation on the Ward A limited number of sofa beds or recliners are available on the Ward for use by parents and carers. Where space is available the Hospital welcomes you to stay with your child however the Hospital can only accommodate one parent or carer per patient. Priority for staying on the ward is given to Breastfeeding mothers Parents of seriously ill children Parents who travel long distances Parents of younger children in hospital ICU Parent Hostel Limited accommodation is available for parents and carers of patients being treated in the Paediatric Intensive Care Unit. Pre-booking is encouraged where possible and a nominal fee is charged per night. Unfortunately the Hostel is not able to accommodate siblings except for breastfed babies. For more information phone the ICU Ward Clerk on (02) 9382 1156. Ronald McDonald House This facility is located on the Hospital grounds with accommodation available for eligible families of patients. There is a fee per room per night and pre-booking is strongly recommended. Due to limited availability preference is given to families who live more than 100km away from the Hospital. For more information or to confirm eligibility phone the Ronald McDonald House Manager on (02) 9382 1622. Randwick Lodge Randwick Lodge offers renovated accommodation in the centre of Randwick walking distance from Sydney Children s Hospital. Each room features WiFi access air-conditioning Foxtel channels en suite bathroom with amenities and an iPod dock. Randwick Lodge sits in the heart of Randwick on Avoca Street right opposite High Cross Park with supermarkets and great places to eat just across the street. Randwick Lodge also offers a guest laundry and a large outdoor BBQ area. From 84 a night. IPTAAS pays 60 per night for eligible families. Air BNB Stayz & Airbnb Both Stayz and Airbnb offer local accommodation at private apartments and houses. www.airbnb.com.au www.stayz.com.au Other Options Further accommodation options can be found in Handy Hints for Your Stay in Hospital www.schn.health.nsw.gov.au files attachments sch_handy_hints_english.pdf If you have tried the options available and are still having difficulties please contact the Social Work Department on (02) 9382 1021. Stayz Handy Hints for your stay in Hospital 72 73 SUPPORT DIRECTORY There is range of low budget accommodation options available to regional families with a child undergoing treatment at Sydney Children s Hospital Randwick. Sydney Children s Hospitals The Children s Hospital at Westmead Phone (02) 9845 0000 Address Cnr Hawkesbury Rd and Hainsworth St Westmead Sydney NSW www.schn.health.nsw.gov.au Sydney Children s Hospital Randwick Phone (02) 9382 1111 Address High Street Randwick NSW www.schn.health.nsw.gov.au Westmead Childrens Hospital Ranwick Childrens Hospital Travel Accommodation Ronald McDonald House (Westmead) Phone (02) 9845 0600 Address Redbank Rd Westmead NSW www.rmhc.org.au westmead Ronald McDonald House (Randwick) Phone (02) 9382 1622 Address 149 -151 Barker St Randwick NSW www.rmhc.org.au randwick-nsw A guide to the Children s Hospital at Westmead. (Information about procedures in hospital accommodation parking food outlets and support services) www.chw.edu.au parents stay parent_handbook.pdf General Information including staying at the hospital and hospital facilities at the Sydney Children s Hospital Randwick. www.sch.edu.au general welcome Ronald McDonald House Westmead Ronald McDonald House Randwick Guide to Childrens Hospital Westmead General info Sydney Children s Hospital Randwick Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) Phone 1800 478 227 www.health.nsw.gov.au Scheme (IPAAS) 74 Careflight Australian Breastfeeding Association Care Flight Phone (02) 9843 5100 www.careflight.org Heart Centre for Children Community Services Australian Breastfeeding Association Phone 1800 686 268 (helpline) www.breastfeeding.asn.au Heart Centre for Children Phone (02) 9845 2345 www.heartcentreforchildren.com.au Pregnancy Birth & Baby Helpline 24hr national line providing confidential information support and counseling. Phone 1800 882 436 www.pregnancybirthbaby.org.au Department of Social Services Phone 1300 653 227 www.dss.gov.au Centrelink Phone 1300 653 227 www.humanservices.gov.au Parentline Counselling service Free professional help for parents or carers of children 0-18 Phone 1300 1300 52 www.parentline.org.au Carers NSW Phone 1800 242 636 www.carersnsw.org.au Kidsafe NSW Phone (02) 9845 0890 www.kidsafensw.org Kids Safe Centrelink Pregnancy Birth & Baby Hotline Dept of Social Services Parentline Counselling service Carers NSW 75 Emotional Support beyondblue A national initiative to raise awareness of anxiety and depression providing resources for recovery management and resilience. Phone 1300 22 4636 www.beyondblue.org.au PANDA Support for parents with postnatal depression and anxiety. Helpline 1300 726 306 www.panda.org.au Carers NSW Carers NSW is the statewide peak organisation for carers with a focus on supporting and advocating for all carers in NSW. Phone 1800 242 636 www.carersnsw.org.au beyond blue Panda Carers NSW Bereavement Sids and Kids 24 hr bereavement support and infant sleeping information Monday Friday 9.00am-5.00pm. Phone 1300 308 307 www.sidsandkids.org Compassionate Friends Organisation offering friendship and understanding to bereaved families. Phone (02) 9290 2355 www.thecompassionatefriendsnsw.org.au Lifeline Phone 13 11 14 (24 hour crisis line) www.lifeline.org.au Bereavement C.A.R.E. Centre Phone 1300 654 556 Good Grief Phone (02) 8912 2700 www.goodgrief.org.au LIfeline Sids and Kids Compassionate Friends Good Grief Adolescent Services Kids Help Line Phone 1800 55 1800 www.kidshelpline.com.au Headspace Offers specific services for people aged 12-25 going through a tough time. Through a network of over 70 headspace centres across the country and online and telephone support. Phone (03) 9027 0100 www.headspace.org.au Livewire An online community designed just for young people living with a serious illness chronic health condition or disability and their families. It is a safe online space where members can connect and share experiences with others who understand what they are going through. Phone (02) 8425 5971 Email member.services livewire.org.au www.livewire.org.au Kids Help LIne Headspace Livewire 76 CARING HEARTS - COUNSELLING REIMBURSEMENT CLAIM FORM Please forward the completed form below to HeartKids NSW ACT Attention Head of Family Support Post HeartKids NSW ACT PO Box 170 Westmead Hospital Westmead NSW 2145 or Email mail heartkidsnsw.org.au Full Name Surname First Name 77 Membership Number Address Contact Number Email Address Name of Child Date of Childs Birth Referral Details Name Of GP Direct Debit Information Account Name BSB GP Contact Details Account Number Date of first treatment Number of treatments claimed Office use Date processed Approved by Please ensure receipts are attached or scanned with Reimbursement Claim Form 78 79 FINANCIAL ASSISTANCE PROGRAM REIMBURSEMENT CLAIM FORM Please forward the completed form below to HeartKids NSW ACT Attention Head of Family Support Post HeartKids NSW ACT PO Box 170 Westmead Hospital Westmead NSW 2145 or Email mail heartkidsnsw.org.au Full Name Membership Number Address Contact Number Email Name of Child Date of Child s birth Please tick the expense you are claiming for Parking Amount ______________ Accommodation ______________ Financial Hardship ______________ Coaguchek ______________ Office use Date processed Approved by HeartsLocal was made possible by the Newcastle Permanent Charitable Foundation. HeartKids NSW Inc. ABN 41 660 178 267 PO Box 170 Westmead Hospital Westmead NSW 2145. Phone 02 9631 2600 Email mail heartkidsnsw.org.au Charitable Fundraiser Number (CFN) 10710. DGR endorsed charity.