Dear MP Name
I am contacting you regarding access to cough assist machines for people affected by
muscular dystrophy or a related condition (muscle-wasting conditions).
Muscle-wasting conditions cause muscle to weaken and waste over time, leading to
increased disability. This can affect muscles in the limbs, as well as the muscles of the heart
and lungs, sometimes significantly shortening life-expectancy. With very few exceptions,
there are currently no effective treatments or cures available.
You could say something here about your own connection for muscular dystrophy or a
related condition, and the impact on you and your family
Some people affected by these conditions weakened cough means that individuals can find
it very difficult to clear mucus from their chest and airways. This can lead to life threatening
respiratory failure and an emergency admission to hospital. Evidence indicates that noninvasive breathing apparatus that assists with coughing (‘cough assists’) can effectively
reduce the number of chest infections people get and help keep them out of hospital.
Respiratory infections are the most common cause of hospital admissions1 and one of the
primary causes of death for some types of neuromuscular condition.
I was alarmed to learn from Muscular Dystrophy UK that recent Freedom of Information
requests from the charity revealed that only 4% of Clinical Commissioning Groups have a
policy to fund cough assist machines for muscle-wasting conditions.
This is despite clear statements from the Minister for Public Health that “the equipment and
respiratory support of cough assist is the commissioning responsibility CCGs.”2
I am sure you will agree it is essential that people have access to the respiratory equipment
they need, when they need it.
I therefore write to ask if you will contact our local CCG to urge them to adopt a policy of
funding cough assist machines if one is not already in place?
For more information, please contact Peter Sutton at Muscular Dystrophy UK on 020 7803
4838 or email p.sutton@musculardystrophyuk.org
Yours sincerely,
1
Bach JR, Ishikawa Y, Kim H. Prevention of pulmonary morbidity for patients with Duchenne muscular
dystrophy. Chest 1997;112(4): 1024-1028
2
http://www.theyworkforyou.com/wrans/?id=2014-10-20.211129.h&s=speaker%3A11115#g211129.q0
Commissioning Policy for Cough Assist
Requests
DOCUMENT CONTROL
Reference Number
Version
Status
Sponsor(s)/Author(s)
(lead in specific policy Draft
Version
area to provide once 0.3 071015
policy ratified)
Wendy Godwin
Amendments
Date
By whom
Approved by IFR panel
07/09/1
5
IFR Panel Members
Approved Planned Care Programme Board
14/09/1
5
Programme
Members
Lead Commissioner Planned
Care/Head of Elective Care
Pathways
Intended Recipients:
Group/Persons Consulted:
Head of Patient Safety and Quality
Improvement
Sally Roberts
IFR team
Board
Robert Saunders and Dr Uma
Viswanathan
Planned Care Programme Board
Monitoring Arrangements and Indicators:
IFR database
Training/Resource Implications: None
CCG Value:
Approving Body:
Improving Outcomes Committee
Ensure equity in access for all patients
Date Approved:
Date of Issue
Review Date
Contact for Review
Lead Commissioner Planned Care/Head of
Elective Care Pathways
Policy Location:
Intranet CCG Website
Summary
Evidence
New evidence includes a systematic review,
several RCTs, crossover trials, case series and
retrospective cohort study, and overall the
studies suggest that MI-E to assist cough is at
least as effective as manual assisted cough. 2
RCTs found MI-E to be superior to other
methods.
N.B. Much of the evidence is for neuromuscular
disease, but the clinical challenge is much the
same in Spinal Cord Injury
Explicit definition of patient group to which it
applies
(e.g. inclusion and exclusion criteria, diagnosis)
Patients who have an ineffective/weak cough
due to neuromuscular disease and cervical
spinal cord injury.
Specifically patients with conditions such as
muscular dystrophy, spinal muscular atrophy,
motor neurone disease and spinal cord injury
Use of cough-assist machine is vital to enable
expectoration of phlegm or mucus from throat or
lungs, thus preventing A&E admission and
emergency intubation.
Respiratory function should be assessed in
people with more complex care needs and
consideration should be made of support from
speech
and
language
therapists
and
physiotherapist who as part of an MDT
assessment can recommend appropriate
interventions such as cough assist devices.
The MDT may include palliative care and
respiratory nurses to support people, for patients
who require intensive interventions and cough
assistance, and a rehabilitation consultation to
advise on the best course of action when a
significant worsening of symptoms occurs
This commissioning policy describes the use of
the cough assist machine to augment/assist an
ineffective cough (determined by a reduced
cough peak flow) in
patients with neuro-muscular disease and spinal
cord injury
Abstract
Contents
Number
Section
Page No.
1.0
Introduction and Evidence
4
2.0
Implications
4
3.0
Prior Approval
5
4.0
Appendices
6
Commissioning Policy for Cough Assist Requests
1.0 Introduction and Evidence
The mechanical insufflator/exsufflator (MI-E) assists the clearance of bronchopulmonary
secretions in those patients with an ineffective cough by the use of both positive and
negative pressure.
Cough Assist is a non-invasive therapy that safely and consistently removes secretions in
patients with an ineffective ability to cough (peak cough flow <270 l/m). The Cough Assist
device clears secretions by gradually applying a positive pressure to the airway, then rapidly
shifting to negative pressure. The rapid shift in pressure produces a high expiratory flow,
simulating a natural cough.
1.1 Benefits of Cough Assist
 Removes secretions from the lungs
 Reduces the occurrence of respiratory infections
 Safe, non-invasive alternative to suctioning
 Easy for patients and caregivers to operate

1.2 Cough Assist Flexibility
 Can be used with a face mask, mouthpiece or with an adapter to a patient's
endotracheal or tracheostomy tube
 Approved for home use in adults and children
 Available in automatic and manual models
1.3 Indications for Use
1.3.1 Typical Cough Assist patients include those with the following conditions:
 Amyotrophic lateral sclerosis
 Spinal muscular atrophy
 Muscular dystrophy
 Myasthenia gravis
 Spinal cord injuries
 Reduced Peak Cough Flow (PCF) of 160l/pm or 270 l/pm or < 270 l/pm and have
clinical symptoms or a weak cough and therefor require intervention necessary to
clear bronchial secretions or infection
 PCF can be measured by coughing into a peak flow meter attached to a mask MI-E
Guidelines 2013 3
1.4 Contraindications
 Any patient with a history of bullous emphysema
 Susceptibility to pneumothorax or pnuemo-mediastinum
 Recent barotrauma, should be carefully considered before use
 The above contraindications should be carefully considered before use.
2.0 Implications
Legal and/or Risk
The risks of not providing this equipment outweighs the financial risks
of making it available
CQC
N/A
Patient Safety
The Cough Assist Device piece can be required and may even be
essential for the safe and timely discharge of spinal injury patient’s
from an acute spinal bed into their own homes in the community.
Patient
Engagement
BCNA representatives as Lay members are involved in the
development of the policy as members of the Neurological Task and
Finish Group
Financial
Reduction in spend on low priority treatments. The estimated cost for
the Cough Assist equipment is £4,500 per patient with an additional
£500 per year, on-going costs. Based on the current levels of demand
the CCG would expect to have one patient every two years requiring
the equipment.
NHS England has commissioning responsibility for the acute treatment
of spinal cord injuries. Their policy does however make it clear that
responsibility passes back to CCGs once the patient is discharged from
Acute care. The Cough Assist Device has been specifically mentioned
as an item that CCGs may be required to provide for patients with
suppressed cough reflex to support their discharge. NHS England
policy also indicates that CCGs will be charged the cost of excess bed
days resulting from delayed discharge if this equipment is not available.
Protection of finance for essential (high priority) services
Sustainability
Workforce/Training The service provider will also arrange training on an ad-hoc basis.
3.0 Prior Approval
This commissioning proforma covers the use Mechanical Insufflation-Exsufflation (MI-E)
therapy for patients with neuromuscular disorders and cervical spinal cord injury patients
3.1 Clinical Indications for Funding
3.1.1. An established diagnosis as paralytic/restrictive disorder including but not exclusively:
 spinal cord injuries (SCI)
 neuromuscular diseases such as ALS
 Guillain-Barré Syndrome
 myasthenia gravis
 muscular dystrophy
 multiple sclerosis
 post polio
 kypho-scoliosis
 syringomyelia
3.2.2. Patient is unable to cough or clear secretions effectively with a

PCF (Peak Cough Flow) less than 160 L/min

VC (vital capacity) below 1.1L in general respiratory muscle weakness, or voluntary

Reduced Peak Cough Flow (PCF) of 270 l/pm or < 270 l/pm and have clinical symptoms
or a weak cough and therefor require intervention necessary to clear bronchial
secretions or infection
Requests for MI-E or 'cough assist therapy' for patients who do not meet the above criteria
are considered low priority and will not be routinely funded.
3.2 Absolute Contra-Indications
 Presence of haemoptysis, untreated or recent pneumothorax, bullous emphysema,
nausea and emesis, severe COPD, severe asthma and recent lobectomy
 Increased intra cranial pressure (ICP) including ventricular drains
 Impaired consciousness / inability to communicate in instances where the patient
does NOT have an artificial airway
3.2.1 Relative Contraindications
• therapy immediately following meals
• tachypnea
• history of COPD and pneumothorax
• large pleural effusion
• cervical spinal injury unclear
• hemodynamic instability
• impaired consciousness / inability to communicate where the patient has an
artificial airway
Supplemental oxygen should not be bled into the MI-E circuit. Oxygen passing through the
fan system during the exsufflation phase results in a potential fire hazard
Appendix 1 References
1. Motor Neurone Disease a Problem Solving Approach for General Practitioners and Allied
Health Professionals 2011 http://www.mndscotland.org.uk/wpcontent/uploads/2011/08/A-Problem-Solving-Approach-2012.pdf
2. National Institute for Health and Care Excellence Multiple Sclerosis Stakeholder
Comments – Draft Guideline June 2014
http://www.mssociety.org.uk/sites/default/files/Documents/Campaigns%20resources/MSSociety-response-to-draft-NICE-clinical-guideline-MS.pdf
3. NHS Evidence https://www.evidence.nhs.uk/search?q=cough+assist+machines
4. Nottingham University Hospital NHS Trust Cough Assist Guideline August 2013
5. Muscular Dystrophy UK 2015 #Right To Breath Campaign
http://www.musculardystrophyuk.org/news/campaign-success-as-nhs-bosses-incornwall-agree-to-fund-cough-assist-machines/
Appendix 2 Evidence Base
1. Bach JR et al. Mechanical insufflation-exsufflation. Comparison of peak expiratory flows
with manually assisted and unassisted coughing techniques.Chest. 1993
Nov;104(5):1553-62
2. Berlly M et al. Respiratory Management During the First Five Days After Spinal Cord
Injury. J Spinal Cord Med. 2007; 30(4): 309–318
3. Chatwin M et al. Cough Augmentation with Mechanical Insufflation/Exsufflation in
Patients with Neuromuscular Weakness. Eur Respir J: March 2003;21(3):502-508
4. LeBlanc C Asthma / COPD Educator Professional Practice Leader, Respiratory Therapy
The Ottawa Hospital Rehabilitation Centre McKim Douglas A MD, FRCPC, FCCP,
D,ABSM Medical Director, Respiratory Rehabilitation Services Associate Professor,
Department of Medicine University of Ottawa
5. Reid WD et al. Physiotherapy Secretion Removal Techniques in People With Spinal
Cord Injury: A Systematic Review. J Spinal Cord Med. 2010;33(4):353–370
6. Respiratory Therapy Policy And Procedure Mechanical Insufflation-Exsufflation for
Paralytic/Restrictive Disorders.
7. Sancho J et al. Mechanical in/exsufflation vs tracheal suctioning via tracheostomy tubes
for patients with amyotrophic lateral sclerosis: a pilot study. Am J Phys Med Rehabil
2003;82(10)750-753
8. Tzeng AC & Bach JR. Prevention of Pulmonary Morbidity or Patients with
Neuromuscular Disease. Chest 2000;118: 1390-1396
9. Winck JC et al. Effects of mechanical insufflation-exsufflation on respiratory parameters
for patients with chronic airway secretion encumbrance. Chest. 2004;126:774-780