Paediatric Ventilator Assisted Care Service in Caritas Medical Centre Ng Wai Yan Canmy, APN, Paediatrics and Adolescent Medicine, CMC

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Hong Kong Paediatric Nurses Association ISSUE May 2017 47 Experience Sharing Overseas Training on Paediatric Rheumatology in London Tse Miu Ling, APN, Paediatrics & Adolescent Medicine, QMH My four weeks overseas training was taken place from 21 st November to 16 th December 2016 at the Guy s and St. Thomas Hospital, one of the renowned teaching hospitals under the NHS Foundation Trust in London. The Guy s and St. Thomas Hospital (GSTH) Service: The GSTH is a major centre for cancer and renal services, and also the leading centre for genetics, stem cells and allergy research. The St. Thomas is the leading center for cardiovascular disease, stroke, dermatology and HIV with one of the busiest Accident and Emergency Departments (A&E) in London and the largest critical care unit in England. Despite the historical architectural style of the hospital buildings, they are employing very advanced care technologies to bring forth their vision on health care. Feature Story I started my attachment training with the Rheumatology and Lupus team, who had won several National Awards including Lupus UK Centre of Excellence in 2014. I joined in the various specialist clinics which cater for different needs of rheumatology patients, such as Biologics Review, Lupus Pregnancy, Youth Adolescent, Psoriasis joint clinic with Dermatologist, and the Ultrasound Articular clinic with Specialist Rheumatologist. Inspiring Trust s Values I was inspired by the Trust s values to: Put the patient first; Take pride in what we do; Respect others; Strive to be the best; and Act with Integrity. Within the 4 weeks, I did witness how the staff demonstrated these values naturally throughout their daily practice. Nurses Roles in the Specialist Clinics and Departmental Meeting The role of the Clinical Nurse Specialist (CNS) is important in Rheumatology and Lupus Department. They serve as the gate-keeper in monitoring and enhancing the drug adherence. Patients with different rheumatic diseases are managed in different Nurse-Led Clinics run by the CNSs. They are devoted to patients and their families with their expert care in teaching and advice on managing the rheumatology and lupus diseases. Apart from CNS, there are the Advanced Nurse Practitioner (ANP) and specialist nurse in the clinic. ANP who had been trained with independent prescriber course could prescribe and titrate the dosage of approved medicine, whereas the specialist nurse has to answer the patients enquiries concerning the disease and the use of medication. The departmental meeting is held weekly. All the consultants, registered nurses, CNSs and pharmacists are welcome to join. The professors and the physicians will discuss the cases encountered in the clinics especially those complicated cases. They will share their experiences in providing expert and holistic care to the patients. The team is also committed in the research activities. I was impressed by their motto: Research has changed my life. www.hkpna.com.hk In this issue : Experience Sharing : Overseas Training on Paediatric Rheumatology in London Challenges of Paediatric Allergy Nurse Service Paediatric Ventilator Assisted Care in Caritas Medical Centre Nurses Stories Our First Outing A Tiny Baby s Miracle HKPNA Activities : HKPNA Spring Dinner Happy Bear Hospital 2017 The Mental Health Review Report Nurses Stories Submission Word Search Game Professional Development Activities Forthcoming Events Renewal & Application of Membership Member s Communication Channel Submission to HKPNA Newsletter St. Thomas Hospital, London. continue on next page

Other Support Services: Regarding the comprehensive services, the GSTH also provides other supporting services to the rheumatologic patients, such as hydrotherapy classes for those with ankylosing spondylitis run by the Clinical Specialist Physiotherapist, and the foot cares for the psoriatic arthritis, as well as the psychological support. In addition, Arthritis UK Foundation provides support on research and resourceful materials for patients requiring advanced therapy such as Biotherapy in controlling the diseases. They produce comprehensive information booklets and web-based online resources which facilitate and enhance patients and families understanding and cooperation in the treatment plan. To conclude, this overseas training has widened my horizons of comprehensive service in paediatric nursing and holistic child care. Challenges of Paediatric Allergy Nurse Service Chen Lai Fan Ivy, APN, Department of Paediatrics, QEH The Allergy Nurse service in the paediatric department of Queen Elizabeth Hospital (QEH) under the Paediatric Immunological and Infectious Disease (PIID) medical team has commenced since 2015. The scope of allergy nursing is to provide diagnostic testing, such as skin prick testing, oral challenge test, allergy education and counseling, proper use of medication and steroids, and emergency anaphylaxis care. The Paediatric Rheumatology Team with physiotherapists and occupational therapists and the author (3 rd from the left) Skin prick testing (SPT) is reliable in diagnosis and commonly performed by the paediatric allergy nurse in QEH. Allergy nurse takes on the responsibilities Patient with positive reaction to Skin Prick Test of full assessment, monitoring of the testing progress to alert the team any risk of anaphylaxis and the use of EpiPen for the critical management of fatal anaphylaxis. The result of SPT forms an integral part of diagnostic work-up to confirm sensitization in IgE-mediated allergic disorders in order to formulate the individualized allergy education and care planning such as avoidance of allergens. The prevalence of allergy risk in infants and young children is rising dramatically worldwide, and is also a common concern in Hong Kong. Allergic disorders are heterogeneous and related to gene-environmental interactions. Research finds that 60% of allergies appear during the first year of life, and 80% of infants with eczema may develop asthma and allergic rhinitis in later childhood. These allergic impacts may lead to low self-esteem, frustration and negatively influence the daily life and school performance of children. So, the advancement of paediatric allergy service in turn the paediatric allergy nursing service should be developed to meet the increasing demands. Since prevention is better than cure, it is crucial to raise public awareness and understanding of allergy in children and preventive strategies. Hence the ongoing development of paediatric allergy nurse to strengthen the education for parents and the public to recognize the allergy risks, the essentials of different diagnostic tests and optimal approaches on allergy prevention should be needed. Paediatric Ventilator Assisted Care Service in Caritas Medical Centre Ng Wai Yan Canmy, APN, Paediatrics and Adolescent Medicine, CMC With the advances of care and medical technologies, there is an increasing trend of children surviving with long-term mechanical ventilator support. This group of ventilator-dependent children are mostly continue to stay in Paediatric Intensive Care Units (PICUs) and may be hospitalised since birth. As time goes by, these children s growth and development become an issue. The PICU definitely is not a favourable environment for them. In contrast, a place with the team of professional to address the children s physical, psychological and developmental needs adds value to their care. Putting the thoughts into action, Ventilator Assisted Care Unit (VACU) is tailor-made for the relatively stable patients, not only to meet their special needs, and can also reduce the bed capacity tension of the PICU services in HA. The Paediatric VACU in Paediatric Ward of Caritas Medical Centre (CMC) The service was commenced in October 2014. Our mission is to provide specialized care services to paediatric patients requiring long-term assisted ventilator support that optimize their quality of life. Our aims are to provide rehabilitation program to facilitate the child s growth and development, provide education opportunities and engage family continue on next page

members to participate in different levels of care, ultimately discharge patient home for family reunion with or without weaning off of ventilatory support. Our ward design is child-friendly full of colourful wall decorations. A pleasant and soothing atmosphere makes it different from a general hospital ward environment and the staff and visitors feel relaxed and refreshed when they come to our ward. The joined efforts of the multi-disciplinary (MD) team provide intense and high quality of care. Our team members consist of doctors, nurses, physiotherapist, occupational therapist, prosthetics & orthotics staff, pharmacist, medical social worker, dietitian, special school teacher, last but not the least, the hospital play specialist. Nurses play the role of a case manager to co-ordinate, liaise and advocate for the child s needs with all MD members. To optimize the care outcome of our children, regular bedside rounds and case review meetings are held to enable every aspect of the patient care can be discussed and reviewed according to their special needs. We encourage the participation of the child s family to advocate for the care of their ventilator dependent child. The family is being the valuable partner of our team. In particular, their opinions contributing to the improved care of their child are recognized and respected. To improve family-centered care of the ventilator dependent children, discharge them home and care by their family members is the ultimate goal of our service. With the comprehensive MD care planning, appropriate community support and caregiver s efforts, back to home care becomes possible. Our team members endeavor to work hand in hand with the family along the journey of normal growth and development of the ventilator dependent children and adolescents in the home environment and community. Our First Outing Lui Chui Ping, RN, Paediatrics and Adolescent Medicine, CMC When the 7th of December, 2016 was an ordinary day to everyone else, it was an important day to our Paediatric Ventilator Assisted Care Unit (PVACU) because we were taking three ventilator-dependent paediatric patients for a walk out of the unit the first time at the Rehabilitation Garden (RG) in CMC. Outing is never a simple task for the PVACU patients. One can imagine how challenging it is for us. We not only need a good weather, but also a thorough pre-outing preparation in advance. Fortunately, the weather was lovely with gentle breezes that day. The sun was shining bright. It was a perfect day for outing. In the morning, we finished our daily routine as quickly as possible, then we organised our patients in their individualized pram and stroller with ventilators. Our escort team included the Consultant, Department Operations Manager, Ward Manager, Advanced Practice Nurse, registered nurses, Physiotherapist, Occupational Therapist, Medical Social Worker and Hospital Play Specialist. Fully equipped for emergencies, our procession set off for the RG. We caught a lot of attention from passers-by on our way to the Garden, because we had a team of sixteen people accompanying the three brightly dressed patients and assisting them on ventilators in their pram / stroller, a scene rarely seen in our hospital. It was also my first expedition to the RG since I have worked in CMC for 4 years. The garden was filled with different kinds of trees, shrubs and flowers like the countryside atmosphere, and there were pavilions and benches for patients to take rest. The warm sunshine, gentle breezes and refreshing air were soothing and energizing. Our Hospital Play Specialist brought bubble set for fun and played the musical tunes like birds singing. We slowly helped them stroll around the beautiful garden trying to be communicative to interact with them. Even though they could barely give us any response, I believed that our kind intention and effort could have warmed their hearts. Perhaps I would never truly understand how our silent patients feel. However, being able to leave their bedside and go outdoor to visit a beautiful garden close by under the sun with gorgeous weather to indulge in the beauty of nature is definitely the children right. This first outing experience certainly is one of the nicest presents we, as nurses, can advocate for each of our patients. Nurses Stories

A Tiny Baby s Miracle Luk Ching Yu, RN, Paediatrics & Adolescent Medicine, QMH Time goes swiftly. It has been half a year since I worked in the Paediatric & Neonatal Intensive Care Unit (PNICU). Most people may find the place heartbreaking and threatening. Nevertheless, I think that this place is filled with challenges, love and hope. I would like to share a story of my patient, showing the instinct of love inherent in the mother and her tiny little boy. An extreme preterm baby boy who was born at 23-week gestation and weighting 500 grams, was transferred to our NICU due to necrotizing enterocolitis. Similar to most preterm infants, he also got the complications of patent ductus arteriosus, retinopathy of prematurity and intraventricular haemorrhage which required a series of correctional surgeries. Although knowing the grave prognosis that the baby might not survive anytime, his parents still requested us to make the greatest effort to save their son. As time goes by, the tiny baby has gone through major surgeries one after another. I could feel the strong vitality of this little fighter and the strong faith of his parents in him. I remembered how joyful the mother was, when she had been waiting for such long time since birth before she could be able to hold her baby for the first time. Miraculously, the little boy's condition gradually went more stable since then and subsequently gaining weight steadily, and became the biggest chubby baby in our NICU with a cute double chin. Treating patient as my own child is the attitude I take at work. Parents in NICU might only be able to watch / touch their baby, who is anchored with numerous infusion lines and tubes to the life supporting machines, through the porthole of the incubator hood. As a paediatric nurse, I automatically assumed the role of parent in their absence to provide the best care for their precious baby. Most people may think that the ill babies in NICU with life-threatening complications can hardly survive, yet I have seen many of the ill babies who miraculously grow out of their illnesses and grow up strongly as NICU graduates. There is always new challenges for a fresh graduate nurse working in PNICU, nevertheless I continue to learn nurses making the difference and appreciate the goodness in life through the NICU babies and families that I encounter. HKPNA Spring Dinner 2017 Eugenie Chan, Editorial Committee Member The HKPNA Spring Dinner was held on 3 rd March 2017 at Choi Fook Restaurant in Jordan, Kowloon with about 120 participants. Members were enjoying the fun games and managed to draw out the HKPNA logo from memory after group communication. We had great time in the most exciting lucky draw as well as social chat to catch up with friends and colleagues. Happy Bear Hospital 2017 智樂開心小熊醫院 HKPNA Activities The Annual Charity Event of Playright Children s Play Association Happy Bear Hospital 2017 was held on 5 March 2017 at the HK Sports Institute in Shatin. HKPNA continued to support with donation of HK$1,000. This year the KIDS choir ( 腎兒之友合唱團 ) with members consisting of paediatric patients of various renal diseases, families and friends participated in singing to the audience. Group photo with guests, participants and HKPNA President (back row) The KIDS choir and the Paediatric Nephrology Team, PMH

The Mental Health Review Report The Government released (April, 2017) the report of the Review Committee on Mental Health. This review aims to ensure that HK s mental health regime can rise up to the challenges of a growing and aging population. The report has put forward recommendations for the enhancement of the overall mental health services in HK. For the support to children and adolescents and their families: 1. To strengthen services and manpower and provide more targeted support; 2. To enhance cross-sectoral and multidisciplinary coordination; 3. To adopt multidisciplinary intervention approach to strengthen support at school; and 4. To provide smooth service transition at different stages. To download the full report, please visit website of the Healthcare Planning and Development Office of the Food and Health Bureau www.hpdo.gov Nurses Stories Submission Call for Submission of - Nurses Stories Working with children in paediatric setting can be really challenging especially for newly graduated nurses. Tell us about a touching, inspiring or lifechanging experience as a nurse in paediatrics or child health. Game

P rofessional Development Activities Professional CME Meetings on Child Health 2017 co-organized with HK Paediatric Foundation, was held on 10/1, 7/2, 7/3, 10/4 & 11/4/2017 at various venues, attendance 20, 13, 21, 44 & 20 respectively. Evening Lecture: Update on Respiratory Virus Disease and Prevention was held on 24/2/2017 at QEH, attendance 55. Evening Lecture: 2016 Infusion Therapy Standard of Practice Nurses Care vs Technology was held on 9/3/2017 at HKPC Building Kowloon Tong, attendance 27. (Members can access presentation files, VIP Score Checklist and peripheral IV /SC care Bundle at HKPNA website) Annual General Meeting, Annual Scientific Meeting 2017 coorganized with HK Society of Paediatric Surgery was held on 7/4/2017 at Eaton Hotel, attendance 29. Short Course on Paediatric Endocrine (Lecture 1: Advances on Paediatric Diabetic Management) was held on 7/4/2017 at QEH, attendance 33. F orthcoming Events Update Series on Child Health 2017 co-organized with the HK Paediatric Society and the HK College of Paediatricians will be held on 29/4, 20/5, 24/6, 22/7, 26/8 and 16/9/2017 at the Jordan Valley St. Joseph s Catholic Primary School. Joint Annual Research & Scientific Meeting 2017 co-organized with the HK Paediatric Society, the HK College of Paediatricians, HK College of Paediatric Nursing will be held on 19/8/2017 at Postgraduate Education Centre, PWH. Please visit: www.paediatrician.org.hk for details. The Joint HKPNA 17th Annual General Meeting (AGM) & 5 th AGM of Hong Kong College of Paediatric Nursing will be held on 29/7/2017. M ember s Communication Channel HKPNA treasures every idea and comment from members. Please forward your suggestions or input in writing to either the President, Ms Iris Yeung at DOM (PAED) Office, 9/F, Block F, QEH or the Hon. Secretary, Ms Rebecca Hui, Ward A6, PYNEH. Besides, you can contact us via email address: hkpna@ymail.com S ubmission to HKPNA Newsletter 3rd Asia Pacific Paediatric Nursing Conference 2017 will be held on 20 & 21/11/2017 in Bangkok. Please visit www.appnc2017.com for details. R enewal & Application of Membership Registered and Enrolled nurses who have experience in paediatric care are welcome as members. Any nursing undergraduate and pupil nurse, of the universities and nursing schools, who has interest in paediatric nursing are also welcome. Please complete the Membership Application/Renewal Form and return it to Ms Caroline Lee, Hon. Dep. Secretary, S404, QEH together with a cheque made payable to Hong Kong Paediatric Nurses Association Ltd. Application forms can be obtained from HKPNA Hospital Coordinators or downloaded from web site http://www.hkpna.com.hk. Kindly fill in your email address when returning the completed form, so that we can keep you informed of the activity / course information updates. Life Members are also welcome to update any personal particulars annually and furnish your email address using the same form. The HKPNA Newsletter is published three times annually. Articles such as case studies, research findings, work reports, member s views and ideas are welcome. Each article is preferably no more than 250 words. Submit either the hard or electronic copy of full text and photographs with subtitles. Author name(s) and contact details should be included. It is the author s responsibility to comply with patient privacy and data protection. Where necessary, informed consent should have been obtained before submission. The Editorial Committee reserves the right to select or reject the submitted article. Send submission to: Ms Lee Wan Ming, at NC(PAE/Neonatal) Office, K- 1007, Block K, QMH OR e-mail: leewm1@ha.org.hk Chair: Members: Editorial Committee 2016-2018 LEE Wan Ming, QMH LO Carol, CMC (Chief Editor) MA Ella CHENG Sau Wai, QEH LAW Shing Ping, PWH TSE Connie, CMC CHAN Eugenie, QMH Views expressed in this publication are not necessarily those of the Editorial Committee, nor of the HKPNA. The publishers accept no liability for the contents in this publication. Articles may be reproduced only with the prior consent of the Editorial Committee.