Louise Edwards Advanced Specialist Speech & Language Therapist. Cambridge University Hospitals NHS Foundation Trust Addenbrooke s Hospital

Transcription

1 Louise Edwards Advanced Specialist Speech & Language Therapist Cambridge University Hospitals NHS Foundation Trust Addenbrooke s Hospital

2 To describe the Cambridge University Hospitals NHS Foundation Trust (Addenbrooke s Hospital) Paediatric Long Term Ventilation (LTV) Clinic To define the role of the Speech & Language g Therapist (SLT) within the LTV Clinic To consider future directions for the clinic

3 Early studies about the outcomes of children treated with long-term ventilation at home reported around 80% survival and good quality of life Com et al (2013)

4 Consultant interested in LTV Complex post PICU care needs SLT acute input to PICU Referring to local services with limited or absent resources to deal with these children No MDT follow up care Outpatient PICU clinic shaped Ad hoc input to clinic With increased resources regular input to MDT clinic

5 Consultant Paediatric Intensivist Consultant Tracheostomy Nurse Specialist Core clinic Specialist Speech & Language Therapist Dietitian Complex Care Discharge Planning Nurse Consultant Paediatrician in Respiratory Medicine Consultant ENT Surgeon Consultant Gastroenterologist Consultant Cardiologist

6 Families need a seamless child and family- centred service A diagnostic and assessment process carried out promptly and leading to an agreed multi agency plan NSF for Children in Hospital concerning Disabled Children and LongTerm conditions (2003b:27)

7 Monthly clinic Caseload from PICU / HDU admissions Regional Major Trauma Centre Regional PICU Wide geographical region Rural Urban

8 33 patients (data as of December 2012) 15 tracheostomy 1 death during audit period Related to underlying oncology diagnosis 3 decannulated d 15 non tracheostomy Male 17: female 16 Age range: 6 months 17 years Patients spread across 8 counties Ranging from 8 / area 1/ area

9 Airway anomaly 6 Muscular dystrophy y 5 Brain injury 5 Obstructive Sleep Apnoea 5 Brain tumour 4 Other* 4 CCHS 2 Neuromuscular disorder 2 N = 33

10 Communication: Eating / drinking: Both:

11 Complex care Sometimes ventilation only follow up MDT appointment families may receive Multiple agencies / needs Issues of ventilation Long term / repeated hospitalisation Respiratory based needs CPAP and implications for airway changes [in CPAP] neurodevelopmental outcome data is limited Ross Russell & Yeaney (2008, p.302)

12 Specialist skills Tertiary level l Community Tracheostomy Specialist / generalist Ventilation / critical care Access to other services VFSS Joint feeding clinic

13 Communication i Environmental impact Developmental delay Social communication Tubes Speaking valves Augmentative & Alternative Communication (AAC) Feeding Respiratory based dysphagia Neurological based dysphagia Experiential based feeding difficulties Non oral vs. oral vs. limited it oral Respectful of quality of life whilst optimising safety Supporting decision making Oral care NBM Long term non oral Restricted diet NB not mutually exclusive

14 Early support / training Parents / carers Nursing teams / care teams Transitioning From hospital to home Acute readmissions Liaison i Other health care professionals Primary Tertiary Nationally Joint working / teaching

15 MDT LTV clinic i provides a unified approach to seamless and ongoing care The clinic brings an expertise in the implications of prolonged hospitalisation and community isolation Assess / reassess / review Baseline Team approach Liaison / link Changing medical needs One stop

16 Evolving service Increase in clinics from 1 > 2 a month Request from lead Consultant for continued and increased SLT input Development of links throughout the region and beyond Joint care of these complicated children Wish list: Psychology, LTV Nurse Specialist Research / audit Multidisciplinary Long Term Ventilation Tracheostomy Feeding / communication outcomes??cross centre

17 Thank you Questions?

18 Com G, Kuo D Z, Bauer M L, Lenker C V, Melguizo- Castro M M, Nick T G, and Makris C M (2013) Outcomes of Children Treated with Tracheostomy and Positive Pressure Ventilation at Home in Clinical i l Pediatrics 52 (1) pp Grady E A (1997) Pediatric Home Mechanical Ventilation in Driver L E, Nelson V S, & Warschausky S A (Eds) The Ventilator Assisted Child: A practical resource guide Communication Skill Builders USA Jardine E & Wallis C (1998) Core guidelines for discharge home of the child on long term ventilation in the United Kingdom Thorax 53 pp

19 Margolan H, Fraser J & Lenton S (2004) Parental experience of services when their child requires long-term ventilation. Implications for commissioning and providing services in Child: Care, Health & Development 30 (3)pp Mok Q (2012) Tracheostomies in paediatric intensive care: evolving indications and changing gexpectations in Archives of Disease in Childhood Ross Russell R & Yeaney N (2008) Special considerations in infants and children in Mackenzie I (ed.) Core Topics in Mechanical Ventilation Cambridge University Press The National Service Framework for Children in Hospital Concerning Disabled Children and LongTerm Conditions UK (2003b)