Community Ventilation

Philip Hughes

Plymouth

Community Ventilation

• Where are we now?

• How did we get here?

• What do we need?

• Where are we going?

• How do we get there and is this the right direction?

Community Ventilation where are now?

Most DGH’s will have patients receiving NIV • Indications relatively unclear • Total patient numbers unclear • Funding unclear

• Case mix variable • Skill mix variable • Quality of care and outcomes variable • Major deficits in skills and resources

Community Ventilation how did we get here?

• Home ventilation relied on NPV until early 1980s when PPV devices and masks became available

• Home NIV developed around major teaching hospitals until expertise and equipment more widely available

• Regional and National variation

• 1990s very few patients living in Devon and Cornwall accessed structured specialist care.

• Mean age of death from DMD 12 years lower in SW than NE

Percentage of users in each disease category by country (see Methods section for

an explanation of disease categories). ▪: lung/airways; : thoracic cage; □:

neuromuscular.

Eurovent Study, data collection 2001

Community Ventilation how did we get here?

Simonds & Elliott Thorax 1999

Community Ventilation What do we need?

Key elements

• Highly trained staff

• Patient selection

• Long term care planning

• Problem solving

Staff

Service profile variable unit:unit

• Staff: medical/nursing/physio/technical

• Major roles are selection, initiation, maintenance, cough, technical support, communication, education of staff, carers and patients. Risk profiling, risk minimisation

• Interfaces with paediatrics, neurology, NMCC, cardiology, palliative care, physio/OT, GP, endoscopy, ICU, respiratory ward etc

Patient Selection

• Goals – Survival (acute deterioration/chronic sequelae)

– Morbidity (hypercapnia, exacerbations)

– QoL (dyspnoea, energy,independence)

• Consider effects of not providing NIV – Neuromuscular (eg DMD) 70% 1 yr mortality once in

ventilatory failure

– COPD, more questionable

– ie. Likely outcomes will influence selection

Set-up

• Often at home, staff time permitting (>50% suitable)

• Good concordance

• Safe

• Preferred by nearly all patients

• Usually pressure preset

• Advanced machines for life support

Long term care: risk management

• Support for patient

• Functional ability

• Education for patient & carers

• Assessment of capacity without a machine.

• Anticipation of what can go wrong - observation.

• Appropriate kit: spares, ambubag

• Other items: suction, O2, cough assist etc

Long term care: maintenance

• Clear communication channels

• Provision for servicing ventilators and replacing disposables

• Review of symptom control

• Review of physiology

• Retrospective assessment of crises

• Specific overview (nutrition, cough)

• Link with other teams (cardiology etc)

• Future planning incl palliative care/EoL

Problem solving

• Ventilator failure

• Power failure

• Surgery

• Travel/education/work

• Transitions

• Elderly

Plymouth NIV service absolute numbers 2004-2017

0

20

40

60

80

100

120

140

160

180

Neuromuscular Airway OHS-OSA Chest wall CSA

2004

2013

2017

2004: 38 cases, 2013: 198 cases, 2017: 353 cases

Plymouth NIV service relative numbers 2004-2017

0

5

10

15

20

25

30

35

40

45

50

Neuromuscular Airway OHS-OSA Chest wall CSA

2004

2013

2017

%

2004: 38 cases, 2013: 198 cases, 2017: 353 cases

Community Ventilation where are we going?

2014 Complex home ventilation defined in an NHS specialist commissioning document with objectives: To provide a specialist multi-disciplinary service for diagnosis and treatment of complex ventilatory failure. • To prevent premature death by ensuring equitable access to appropriate specialist treatment. • To improve quality of life of both the patient and their carers. • To maximise the possibility of patients being able to live in their own homes on the most appropriate and least invasive mode of ventilatory support with the maximum amount of time possible each day spent breathing spontaneously. • To make it possible for patients with a high degree of ventilator dependency to live as normal a life as possible. This will be facilitated by maximising ventilator free time and optimising portable ventilatory support including portable or wheelchair mounted ventilators and cough assist. • To improve outcomes for individuals failing to wean from invasive mechanical ventilation. • To oversee those aspects of care that fall outside the expertise of local units. • To reduce hospitalisations amongst individuals with complex respiratory failure. • To ensure cost effective use of expensive resources.

Community Ventilation where are we going?

The patient population served by this specialised service comprises tracheostomy-ventilated patients, individuals requiring diaphragm-pacing and those patients requiring sophisticated non-invasive ventilation ie

• Assisted non-invasive ventilation for more than 14 hours per day, • Assisted non-invasive ventilation for less than 14 hours per day with significant co-morbidities that complicate the delivery of ventilatory support.

Local and regional services will be established • ‘local units will maintain a diagnostic and treatment service for sleep disordered breathing

and will be capable of managing simple nocturnal respiratory failure’ • Specialist centres ‘will provide diagnostic and multi-disciplinary assessment and management

of all patients requiring complex home ventilation’.

Community Ventilation where are we going?

A redrafted document made an attempt to define complexity in more detail:

Community Ventilation How do we get there and is this the right direction?

• Current services set up around RCHT, PHNT +SDDH, RDE, NDDH

• Draft documents suggest complex cases should be managed separately by a dedicated team

• Advantages and disadvantages obvious

Community Ventilation How do we get there and is this the right direction?

Pro

• Specialist agenda offers opportunity to address unmet need

• Expert MDT care

• Reduced variation in outcome

• Efficiency savings

• Resilient services

Con

• Disenfranchises some units

• Major reorganisation of care delivery

Community Ventilation How do we get there and is this the right direction?