Home Respiratory Care Norwegian model

Transcription

1 Home Respiratory Care Norwegian model Heidi Markussen Nurse, PhD candidate Tiina Andersen Physiotherapist, PhD candidate Norwegian Centre of Excellence for Home Mechanical Ventilation / Haukeland University Hospital / University of Bergen Norwegian Centre of Excellence for Home Mechanical Ventilation / Haukeland University Hospital / University of Bergen Bergen, Norway Bergen, Norway H&T

2 Bergen H

3 H

4 H

5 Outline Legal aspects LTMV in Norway Annual costs Quality of care and support available Patient and care worker education Quality of life for the patients and their families Accessibility of care in urban and rural areas Problems encountered Positive aspects of the system in comparison to the other

6 Norway Population of 5,109,059 (2014) Total area of 385,252 km2 The fourth-highest per capita income in the world H

7 H Health care system structure in Norway Ministry of Health and Care Services Ownership Directorate of Health Municipalities Regional Health Enterprises - Municipal Health Service - Nursing, Care and Rehabilitation - Social Services Hospitals National health Registry National centers of exelency National guidelines

8 H Responsibilities Specialist health care: Diagnosis and initiation of LTMV treatment Establish contact with primary health care Education of the patient and caregivers Multidisciplinary approach Follow-up Primary health care: Provide caregivers/service providers in daily life Collaborate with hospital in training and establishing routines Coordinate and initiate individual plan Establish multidisciplinary resource group with patient and caregivers

9 H Legal aspects for LTMV Law on healthcare(1999) Law on specialized Health Services (1999) Law on municipal health services (2011) Law on patient and user rights(1999) (revised 2014)

10 Annual costs! «100%» coverage by social security system Huge I ndividual differences in need for care LTMV-patients reliant 24h/7d from to 1 mill per patient central health authorities reimburses 80% of costs > to the municipality for patients under 67 years

11 Home Mechanical Ventilation In Norway Four regional Health enterprises owned by the state Norwegian Centre of Excellence for Home Mechanical Ventilation (Bergen)

12 LTMV diagnosis development in Norway T

13 Norwegian Centre of Excellence for Home Mechanical Ventilation q q q q q q To build, maintain and convey competence in Norway Research Counseling and professional support / supervision Follow national and international professional development in the field Establish appropriate national professional standards (guidelines, recommendations, etc.) Establish and ensure the patient registry Our main objective: Increased quality of life and equal access to treatment for patients with chronic hypoventilation, based on knowledge and best practices.

14 National nettwork Regional resource groups Specialists ú Pulmonologits ú Pediatrians ú Nevrologists ú Specialist nurses ú Specialist physiotherapists ú Researches Municipal healthcare ú General practioners ú Others

15 H Regional Survey and report 2011/2012 Regional plan of action 2012/2013

16 T Long-term mechanical ventilation at home in Norway n=1304, prevalence 26,5/ About 90 % of the patients lives at home and are self-reliant, or have need for little /moderate amount of help About 10 % have need for greater amount (up to 100 %) nursing (Norwegian nationwide register for long-term mechanical ventilation ( ))

17 T "Self-reliant patients" Typical Bi-level-PAP users NIV during the night Live at home alone /with family / may use some services from home care nursing or Live at the institution

18 "Relient patients" T

19 ALS clinic at Haukeland University Hospital, Bergen, Norway Multidisciplinary collaboration between Department of neurology Thoracic department One day / month a common out-patient clinic for ALS patients in the county T

20 ALS clinic at Haukeland University Hospital, Bergen, Norway Patients has a appointment with neurologist and / or pulmonologist specialized nurses at both departments In addition due to individual needs, with: Physiotherapist specialized in neurology Physiotherapist specialized in home respiratory care Speech therapist Occupational therapist Nutritionist Social counselor T

21 ALS clinic It is important that between visits the patient support team maintain regular contact with the patient and relatives (e.g. by phone, letter or ) Effective channels of communication and co-ordination are essential between the hospital based MD-team the caregivers team the palliative care team community services EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis (2012), Eur J Neurol. T

22 T Start up - generally 1 Specialist health care and primary health care cooperation: How to do it? Specialist health care: ensure that the treatment is secure outside the hospital Specialist health care: training of primary health care personnel

23 Start up - generally2 The primary health care: decide of such assistance as necessary and how this care will be granted The primary health care: responsible for ensuring the care is properly (due to National guideline) Pulmonary doctor, multidisciplinary team and the GP: treatment plan Individual plan T

24 Knowledge Caregivers education and training ú Knowledge of disease ú Equipment ú Patient care ú Ability to manage acute situations T

25 Complex training patients with "team" - especially tracheostomized patients: Respirator ú Day 1- theory lessons' ú Day 2 - "certification" medical technical equipment ú Drilling acute procedures (action plan for unexpected events and troubleshooting) ú Practical training in the hospital 2-3 weeks: ú The team leader has central role- must be confident in all procedures in order to provide training at the home after discharge

26 Complex training Respirator ú Checklists ú Written procedures / patient folder ú ppt. presentations from theory lessions ú Telephone number for immediately help 24h / day ú E-Learning ú Follow up at home (LIASON NURSE) Phone / guidance Home visits "Theme Days"

27 Home visits to the patient: by the liaison nurse Customize ventilatory and pressure support Replacing mask or ventilator Spot pulse oximetry, kapnometri or art. blood gas sample Download ventilator data Change of cannula Education to caregivers in the home / nursing homes T

28 Project Breathe" Quality assurance and standardization of training in the use of LTMV Target group: ú Adolescents receiving LTMV ú Caregivers without professional health care education A collaborative ú National center of excellence in: Home mechanical ventilation Neuromuscular diseases Telemedicine 2 year project ( ) E-learning T

29 Are support available? Big problem in rural districts Increasing use of private health care providers Turn-over of personnel Increased time and cost spent on training Patient can be forced to move into a nursing home Headlines : Liss (40) are not allowed to move home from the nursing home H

30 The range of home mechanical ventilation burden of care 100 % Independency Complexity of treatment 0 % 8 Need for ventilatory support 24 hours H

31 H Tools to organize and achieve an integrated care: Individual plan What is an Individual Plan? Comprehensive description of patient requirements and how to fulfil them Coordinated specialist health care and community services The right to Individual Care Plan is provided by legislation and encompasses ú Patient Right ú Community health services ú Specialist health services ú Mental health care ú Social services

32 H Who is entitled to an Individual Plan? Patients in need of long term follow-up and multidisciplinary intervention due to chronic disease or disability

33 Individual Plan - coordinating Home nurse Day-care unit Physician Physical training Transport Hospital depart. Rehabilitation depart. / Inst. COORDINATING Home / Place to live INDIVIDUAL GOALS Diagnosis Treatment Medication Goals Function assessment Treatment follow-up Goals Planning, evaluating Training Activities Home aid Social activities Education Social Security Culture Capacity assessment Care arrangement Transfer Care arrangement Transfer (Follow-up) Job Follow-up H

34 Patients` experiences ú Huge diversity in knowledge and skills among caregivers in the home (Ballangrud et.al 2006) ú Some of the caregivers were not able to understand the patients, and were not aware for the patients body signals (Lindahl, 2010) ú QoL increases when the patient has more control over how, where and when aid are granted (Gibson et.al. 2009) H

35 Important Message! We more than "ventilator-dependent and want to be seen as full individuals (Spratling, 2012) : H

36 The purpose of LTMV ú Maintain or increase the quality of life Prolong life In some cases to maintain life H

37 H A survey carried out in the west region of Norway Invited: All patients in the national registry of LTMV in the west region of Norway Included: 127 patients (65%) 52 neuro-muscular patients Instruments: SF-36 questionnaire A specific questionnaire SRI Ref: Markussen H, 2014

38 Respiratory Complaints RC 8 items Social Functioning SF 8 items Physical Functioning PF 6 items SRI Summary Scale SS Well-Being WB 9 items Anxieties AX 5 items Attendant Symptoms and Sleep AS 7 items Social Relationships SR 6 items Windisch W. et al. J Clin Epidemiol 2003; 56: H

39 H The Severe Respiratory Insufficiency (SRI) Questionnaire Available from URL: The website in German society for Pneumology

40 The Severe Respiratory Insufficiency Questionnaire Prof. Dr. Wolfram Windisch H

41 Health related quality of life in Norwegian LTMVpatients SRI Total n = 123 NMD n = 52 COPD* n = 25 Obesity n = 37 Chest wall** n = 9 Mean (SD) Mean (SD) Mean(SD) Mean (SD) Mean (SD) SS 55.8 ± ± ± ± ± PF 38.8 ±24, ± ± ± ± RC 56.3 ± ± ± ± ± AS 56.0 ± ± ± ± ± SR 66.5 ±24, ± ± ± ± AX 60.5 ± ± ± ± ± WB 60.5 ± ± ± ± ± SF 49.7 ± ± ± ± ± One-way ANOVA. Significance level 0.05 p H

42 H HRQOL in the English, German and Norwegian LTMV users SRI NMD COPD Obesity Chest wall Total Mean (SD) Mean(SD) Mean (SD) Mean (SD) Mean (SD N-SRI-SS 61.0 ± ± ± ± ±18.4 E-SRI-SS 58.8± ± ± ± ±18.9 G-SRI-SS

43 Challenges in LTMV 24/7 Patient and family perspective* Autonomy / Privacy Caring for family Fighting the system resources to stay home Coherence and competency of health services Cognitive changes/ dementia Caregivers* Burn out, Depression, Being a guest Who is deciding Between a rock and a hard place Economy Priority discussion Cost effectiveness Huge differences internationally Ethics Equal right to treatment Initiation Discontinue treatment *)Home mechanical ventilation and specialised health care in the community: Between a rock and a hard place. Knut Dybwik, Ph.D Phil 2011 H

44 Challenges - competance Few patients Rare diseases Technical and resource demanding treatment Long time to develop expertise, difficult to maintain Individual adaptations always necessary Limited transfer value Training of caregivers ~ necessary regardless qualifications Caregiver: Responsibility Resource scarcity Recruiting & Temporary Agencies Turnover / burn out Vulnerability to illness, holidays etc - access to resources Conflicts Team Collaboration / lack of team management working environment Patient / family

45 Actions what do we have today? Superior - national guideline and supervisor Regional action plans Well-defined training program, written information, patient folders, checklists Electronic learning (2015) Follow up - ambulant team ú Liason nurse - 50% ú (Doctor) ú (Physiotherapist)

46 Plans ahead Funding from national health authorities to a project for LTMV competence in the municipal sector Objectives: To strengthen competence in the municipal sector regarding life-sustaining LTMV To increase safety for patient and user To better working environment for the caregiver To utilize resources efficiently Preliminary mandate To develop a model for interaction between different levels of health care services that enhances knowledge and expertise development

47 Acknowledges Colleagues in Norwegian Centre of Excellence for Home Mechanical Ventilation, Norway Colleagues in ALS Clinic, Haukeland University Hospital, Bergen, Norway

48 Thank you for your attention