Paediatric Home Ventilation Discharge planning Colin Wallis Respiratory Unit Great Ormond Street Hospital.

Slides:



Advertisements
Similar presentations
YOUR ROLE IN REALISING THE AUSTRALIAN CHARTER OF HEALTHCARE RIGHTS A TRAINING GUIDE FOR HEALTHCARE PROFESSIONALS.
Advertisements

Social Care, Health and Housing The Future of Social Work – Making Connections 22 September 2011 Linda Sanders – Corporate Director of SCH&H.
Hillingdon Community Health Improving Breastfeeding prevalence with partnership working Jennifer Taubman Breastfeeding Coordinator.
Hospital Discharge The Carers Journey Developed On Behalf Of Action For Carers (Surrey) And Surrey County Council.
Hampshire Children’s Services Personalisation and Personal Budgets Pilot A Parent and Carer Guide.
Caring. Carers Paid Social Carers: Staff who work with people in residential care homes, in day centres and who provide care in someone’s home Unpaid.
The main drivers Compassion - Compassion is the emotion that one feels in response to the suffering of others that motivates a desire to help Dignity.
Week 5- The Organisation of Health Services Part 2.
12 June 2004Clinical algorithms in public health1 Seminar on “Intelligent data analysis and data mining – Application in medicine” Research on poisonings.
Introduction to basic principles
Rural Generic Support Worker Opportunities and Synergies Dr Anne Hendry National Clinical Lead for Integrated Care Joint Improvement Team.
Dr. ABDULLAH ABDU ALMIKHLAFY Assistant professor & Head of community medicine department Presented By University of Science & Technology Sana’a – Yemen.
10 Year Review of Paediatric Tracheostomies The Leeds Teaching Hospitals NHS Trust.
Educate. Support. Empower. Advocate. A Consumer/Caregiver Perspective.
Developing the AHP Neuro Navigator in NWL – Lessons from Barnet
Click the mouse button or press the space bar to display information. How many people know a lot about their family health history? Why is this important?
Emergency Oxygen Professor Thida Win 10/03/2015SCN Emergency Oxygen Event.
Developing a National Paediatric Diabetes Plan: What are the key issues for education? Dr. Sheridan Waldron HCP Education Lead for Children and Young people.
CALL NOW CALL NOW WHERE DO KIDS NEED TO BE SAFE? Everywhere in the Community.
Signs of Safety Barb Lacroix Child Intervention Practice Specialist
IMPaCCT Standards for Paediatric Palliative Care in Europe Finella Craig Consultant in Paediatric Palliative Medicine The Louis Dundas Centre Great Ormond.
Perspective in pediatric nursing
Discharge planning – reducing admissions/re- admissions Jo Clarke, CPPE tutor 1.
Discharge Planning- Who’s Role Is It Anyway? Andrea Ferns Children’s Long Term Ventilation Co-ordinator CARA Service.
Managing Medical Needs: Changes in Schools’ Responsibilities Mark Weston Lead Nurse for Paediatric Diabetes.
TANI FORUM 2014 Exploring Concepts of “Care” Focus on Children & Families Ronelle Baker Allied Health Leader Child, Women & Family Services.
Our Session Today YOUR WISHES: EXPRESSING YOUR HEALTH CARE DECISIONS Other Topics in the Program: Your Health Your Financial Security Your Home & Community.
Oldham SEND Pathfinder Personal Budgets An Oldham Perspective Wednesday 6 th March 2013 Julie Hawkins: Short Breaks & Transformation Manager.
Palliative Care: How can we make a difference? Annual Conference 2009.
THE NEIGHBOURHOOD CARE SERVICE Who cares?. What is Neighbourhood Care? Neighbourhood Care aims to keep families together by providing early preventative.
This presentation is meant to serve as a guide for your community presentation Modify slides as needed to be appropriate for your organization and community.
Risk, quality and trust: lessons from Francis Jeremy Taylor, CEO, National Voices At CfPS Annual Conference 10 June 2014.
Introductions Name Where you work Something you are good at.
Picture Seniors Health Services Presentation to Health Advisory Councils October 13, 2012 Cheryl Knight, Seniors Health Primary & Community Care
Towards A Care-Bundle For Long-Term Weaning Dr Matthew Jackson Dr Tim Strang & Dr Maria Safar CTCCU, UHSM.
Hospital Discharge of Homeless Persons in Chicago
Healthcare and Hospice Unit 8 Seminar. Human Services in Hospitals Psychosocial assessments Post discharge follow up Providing information and referrals.
Keeping the End in Sight The role of a Renal Social Worker in a Renal Supportive Care Team.
End of Life Care At the West Suffolk Hospital
Building blocks Releasing time to care Leading Better Care SPSP Better Together E Health Strategy And of course YOU!!!!
The Health Roundtable Central Network Respiratory Coordinated Care Program Innovation Presenter: Benjamin Kwan Staff specialist respiratory and sleep medicine.
Stroke services Early supported hospital discharge Six month reviews.
SEND Reforms: Parent information session.
Dementia Action Alliance The Carers’ Call to Action Supporting the needs and rights for family carers of people who have dementia.
Clinical Psychology and Cleft Care Dr Louise Dalton Consultant Clinical Psychologist, Spires Cleft Centre Chair, Cleft Psychology Special Interest Group.
Appendix 9 NIPEC Children’s Nursing Network Workshop Mary McKenna WHSCT Presentation Friday 15 February 2013.
NEIGHBOURHOOD ENABLING TEAM (NET) Care Planning for Children - Risk Assessments and Packages of Support Arising from Problem Parental Drug Use Author:
S.A.F.E Situation Awareness For Everyone
Healthcare and Hospice Unit 8 Dawn Burgess, Ed.D.
n Disability = health problem n 1980’s amalgamation of Disability Services in The Health Department with The Department of Community Services n Boundary.
Click the mouse button or press the space bar to display information. 1.Discuss the steps needed to access valid health information, products, and services.
Older People’s Services The Single Assessment Process.
Module 1: Alzheimer’s Disease – A Public Health Crisis A Public Health Approach to Alzheimer’s and Other Dementias.
A Patient Journey Marianne Plater Community Geriatrician.
Birmingham Better Care Fund Update for Health and Wellbeing Board – January 2016.
NOT TO BE USED UNTIL 12 NOON FRIDAY #Takingcharge in Greater Manchester Health and Social Care Devolution key messages.
Department of Health The Australian Charter of Healthcare Rights in Victoria Your role in realising the Australian Charter of Healthcare Rights in Victoria.
The Mental Health Act & Mental Capacity act Dr Faye Tarrant ST5 Substance Misuse.
UNITS 4:3-4:4 Patients’ Rights and Legal Directives for Health Care.
Key Knowledge Confidentiality Year 4 Medical Ethics and Law Thread Course The Ethox Centre, University of Oxford.
Ideal Critical Care Setup Dr Tim Baker Stockholm, Sweden Blantyre, Malawi SATA Conference, Tanzania, May 2016.
Overview and Scrutiny, Coordinating and Call In Committee Personalisation Presentation 3 March 2009.
Paediatrician By: Sarah Alzetani.
Suffolk Family Carers Part of the Princess Royal Trust for Carers Centre Network Suffolk County Council Suffolk Fire and Rescue Service.
The Patients and Families Voice. PATIENT FAMILY Diagnosis Antenatal Post Natal Throughout life. Decision Making and Pathway Planning Treatment Surgical,
The Children’s Heart Study
Better Local Care Vanguard (South Hampshire)
Dementia: Barriers to accessing quality End of Life Care and Role of Admiral Nurses Chris O’Connor Consultant Admiral Nurse Dementia Fellow   
Presentation transcript:

Paediatric Home Ventilation Discharge planning Colin Wallis Respiratory Unit Great Ormond Street Hospital

.

Is my patient a candidate for home ventilation? Is it safe to send them home? How can we get them home quickly? Who is responsible for them after discharge? Why are we doing this? Is it worth it?

What is “long term ventilation”? Any child who, when medically stable, continues to need a mechanical aid for breathing, which may be acknowledged after a failure to wean, or a slow wean, three months after the institution of ventilation. Jardine & Wallis Thorax 1998;53:

1. Robinson, Arch Dis Child. 1990;65: Jardine, Wallis, BMJ. 1999;18:295-9 Numbers of Long-term Ventilated Children - UK

Diagnosis: Central control: - CCHS, post infective, metabolic, High spinal injury Neuromuscular - myopathy, DMD, SMA Chronic lung disease - hypoplasia, BPD, ILD Obstructed Airways - craniofacial, malacia

Who Can Go Home? Stable airway Oxygen requirements <40% Home ventilatory equipment can maintain safe levels of pCO 2 Other medical conditions well controlled Willing and capable parents It is practical to provide the level of support and intervention that the child requires at home

Where are the LTV children? n = 241

Is my patient a candidate for home ventilation? Is it safe to send them home? How can we get them home quickly? Who is responsible for them after discharge? Why are we doing this? Is it worth it?

What Are We Trying To Do? 1.Meet metabolic and ventilatory requirements safely 2.Optimise (sustain & extend) the quality of life 3.Sustain or improve growth and development 4.Prevent or minimise complications 5.Provide cost-effective care 6.Maintain the child within their family unit

Is Discharging a 24 hr Ventilator Dependent Child Safe? SAFETY vs SUCCESS Attitudes to risk: Professionals vs parents vs child/adolescent

Is my patient a candidate for home ventilation? Is it safe to send them home? How can we get them home quickly? Who is responsible for them after discharge? Why are we doing this? Is it worth it?

Don’t you think it would be best if you took this child over and arranged for the discharge home?

What Are the Placement Options? What Do You Think? Someone else’s PICU Transitional Care Unit Specialist respiratory ward General paediatric ward in DGH Designated centres Peripatetic expert teams.

On the Road to Discharge.... Stumbling blocks Hurdles Brick walls -Carers, funding -Changes to family, housing - Parental refusal, -Unstable medical condition

Ten Essential Ingredients Towards a Successful Discharge 1. Involve the family 2. Establish the child on designated equipment 3. Identify co-ordinator(s): hospital key worker community key worker 4. Identify a discharge team: 5. Inform the purchasers and give them the list

Ten Essential Ingredients Towards a Successful Discharge 6. Review housing and emergency services 7. Recruitment and training: nurse/carers 8. Educational review 9. Agree written emergency procedures and respite arrangements 10. Trial run

Is my patient a candidate for home ventilation? Is it safe to send them home? How can we get them home quickly? Who is responsible for them after discharge? Why are we doing this? Is it worth it?

Three Central Themes The child is a member of the family The family must be supported and involved in decision making Responsibility transfers from the hospital to the community health team and the family at discharge

WITH ACKNOWLEDGEMENT TO Dr Jane Noyes

The day you get home is the day that the journey really begins THE BIG 3 UNPREDICTABLES Carers Families Underlying condition

The Underlying Condition Ventilated children, as they grow and develop, have lives that unfold slowly unpredictably individually

Is my patient a candidate for home ventilation? Is it safe to send them home? How can we get them home quickly? Who is responsible for them after discharge? Why are we doing this? Is it worth it?

Is it worth it? - costs ANNUAL COSTS: 24 home care package£180,000 Transitional care unit£258,420 PICU£500,000

Is it worth it? - outcomes No. of children

Is It Worth It? - The GOS Experience Discharged: –39 children on 24 hour ventilation: –median age 4 years, TTD: 9 months Outcome: –7 died, –17 continue ventilation (0.2 – 7 years), –15 came off the ventilator (median time 4 years), –2 went pear shaped Least likely to wean: –Neuromuscular Most likely to come off: –BPD, malacia REF: Edwards ADC 2004;89:251-5

Is it always worth it? How did we get into this mess? What are we doing here? What is the meaning of life? Who did a trache on this child?

Juggling Technology, Ethics and the Law Technology – what we can do: The law – what we must or must not do: Ethics – what we ought to do:

Conflicts in Difficult Decision Making The parents The patient The wider family The doctors – all of them The other professionals The communities The lawyers Ethics Secular morals Religious beliefs The law The GMC The playersThe Rules For every patient there is the right thing to do For 2 patients with the same problem there are 2 different ways of doing the right thing The game A game of two rights A game of two wrongs

Home ventilation can be good for you Future challenges: Getting the patient selection right Coping with the info age – working with the parents Child friendly ventilators and interfaces Getting the package together quickly Careful audit –numbers –impact on families –long-term outcomes