Respiratory (COPD) MCN Annual Report 2008-2009
Annual Report
2008-2009
Lothian Respiratory
(COPD)
Managed Clinical Network
2
Respiratory (COPD) MCN Annual Report 2008-2009
Table of Contents Page
Foreword 3
Structure of the MCN 4
Website 5
Local COPD services 6
Lothian COPD Guidelines 9
Focus on … spirometry and training 11
Respiratory function lab 12
Other highlights this year 12
Focus on … pulmonary rehabilitation 13
Focus on … supported self-management 14
What our patient and carer reps say 14
Focus on … oxygen therapy 15
Financial snapshot 15
Measuring what we do 16
Our plans for the coming year 18
Appendix 1—Nine core principles of an MCN: self-assessment 19
Appendix 2—Membership list 21
Contact details 23
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Respiratory (COPD) MCN Annual Report 2008-2009
Foreword The newly-formed Lothian Respiratory (COPD) Managed Clinical Network (MCN) got off to a
running start in its inaugural year. Many of our members have transferred to the MCN from the
Lothian Respiratory Group, which no longer meets. All have been willing to get involved in
making the decisions, giving advice and doing the work necessary to move projects from the
planning phase through to implementation. We have been extremely fortunate to have a
wonderful team of clinicians, patients and carers who all share a passion for improving the care
of respiratory patients across Lothian.
This first year, we have been focussing our efforts on chronic obstructive pulmonary disease
(COPD). COPD is a disease without an obvious beginning, it is for this reason so many people do
not even realise they have it and do not get treatment until they have reached the later stages.
As the disease progresses, patients find themselves severely breathless, isolated and house-
bound. When exacerbations of their symptoms occur, they are frequently admitted into hospital
as emergencies. If we are able to reach out to COPD patients earlier, they will be better able to
slow the progression of the disease and improve their current lifestyles.
Our over-riding aim has been to improve services for patients, improve the quality of diagnosis
and treatment and sensitise professionals to the challenge of COPD and the need to find patients
who are as yet undiagnosed.
Over the next year or so, the MCN will begin to include other respiratory diseases in our remit.
We would like to cover illnesses such as asthma, interstitial lung disease (affects the tissue fluid
of the lung) and bronchiectasis (localised, irreversible infection of the lung). Each of these areas
involves a vast amount of research and hard work to gather the necessary information to
produce a catalyst for real and measured improvement in the care for these patients. We are
glad we have a team that is up to the task!
Patients and carers have been a huge part of this year’s planning and we are always looking for
new people to help us get it right by bringing their common sense and actual experience to the
discussions. For more details of what we do and how to get involved, please visit our website at
www.lothianrespiratorymcn.scot.nhs.uk. We very much look forward to hearing from you.
We are constantly adding new members to the MCN and the interest continues to grow. It has
been a very active year with many projects under way and new ideas being developed.
Everything we do is designed to create a seamless service for patients and to have better-trained
and more confident professionals involved in delivering care.
Watch this space for exciting progress in the pathway of care for respiratory patients in Lothian!
Dr Ninian Hewitt
MCN Lead Clinician
Dr Alison Bramley
MCN Manager
Kathleen Thayne
MCN Coordinator
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Respiratory (COPD) MCN Annual Report 2008-2009
The MCN Structure
The Respiratory (COPD) MCN was founded on the
nine core principles of MCNs as set out by the
Scottish Government. (See Appendix 1). As part
of an MCN, doctors, nurses and other healthcare
professionals from hospitals, general practice and
the ambulance service work together in
partnership with NHS
managers, social
services, voluntary
organisations and, most
importantly, patients
and carers.
The Lothian Respiratory
(COPD) MCN aims to
improve COPD services
in Lothian and to ensure
that all patients have
the same access to
good quality
healthcare. In the
future, our remit will
expand to include other respiratory illnesses.
The Steering Group is the main decision-making
body of the MCN and currently has 76 members,
including professionals from across the full
spectrum of COPD care as well as patient and
carer representatives to give us clear input into
their experiences with COPD. This group meets
three times a year.
The Core Group consists of 14 professionals,
including those from long-term care teams
throughout Lothian. We have a manager, a lead
clinician and a coordinator working together to
ensure goals are met and good communication is
maintained between all involved. This group
meets on a monthly basis and its members have
the responsibility of working and delivering on
projects.
Our funding is jointly provided by Lothian NHS
Board as well as five pharmaceutical companies -
AstraZeneca, Boehringer
Ingelheim, Cheisi,
GlaxoSmithKline and Pfizer -
under the umbrella of the
Association of British
Pharmaceutical Industries in
Scotland (ABPI Scotland). The
involvement of ABPI Scotland
has been an innovative
approach; they have helped
financially but also have been
very supportive in developing
and circulating ideas. Their
expertise has become more
useful as time and projects
have evolved. It has been an
interesting project in its own right and may
provide the necessary information for other
collaborative ventures in the future.
We have an agreed constitution which was subject
to wide consultation with health care professionals
involved in respiratory services in Lothian as well
as the voluntary sector.
On 28 May 2008, the inaugural meeting of the
Steering Group was held. In order to make the
best use of time with the professionals, patients
and carers we had gathered, the attendees were
split into five working groups: training,
diagnostics, pathway, supported self-management
and quality assurance. These groupings discussed
Lothian Respiratory (COPD)
MCN Steering Group
Lothian Respiratory (COPD)
MCN Core Group
Action Groups
Pulmonary Rehabilitation
Spirometry and Training
Supported Self-management
Quality Assurance
Short Life Action Groups
COPD Guidelines
Oxygen Therapy
Links
ABPI
Palliative Care MCN
Stop Smoking Services
LTC Steering Group
Working group at the inaugural
Steering Group meeting
5
Respiratory (COPD) MCN Annual Report 2008-2009
their topic, issues and concerns particular to their
area, as well as actions that would be required in
response to current concerns and how the quality
of those actions could be measured. Next, each
group was given time at the other group stations
to expand on what the initial group had come up
with.
Based upon these discussions, the following
action groups have emerged:
• Spirometry and Training
• Supported Self-management
• Quality Assurance
• Pulmonary Rehabilitation
• Oxygen Therapy
• COPD Guidelines.
We have also linked up with the Palliative Care
MCN and Lothian Stop Smoking Services and the
leaders from each of these networks are members
of our Steering Group.
Holding regular meetings for each group and
using the MCN office as the “hub” of
communication between all groups, ensures that
nothing gets overlooked and everyone stays on
the same page, allowing focus to be placed on the
reason behind the creation of the MCN – the
improvement, standardisation and equity of care
for respiratory patients throughout Lothian.
After much collaboration, we are very excited to
introduce our new website. Here, you will be able
to keep up to date with everything the MCN is
doing. We will include all public meeting and
event information and you will also be able to
read the latest minutes from all meetings.
Our new Lothian COPD Guidelines (see page 9)
are available for download from the website.
You will also be able to link to or download other
pertinent guidelines and forms. Links will be
included for other organisations dealing with
COPD such as the British Lung Foundation, Chest,
Heart & Stroke Scotland and Smokeline.
If you need to get in touch with someone from the
MCN support team, all contact information will be
located here as well. We aim to be a transparent,
inclusive and accessible network and our new
website plays an important part in achieving this
goal.
We’d be pleased to receive your feedback.
Contact us on…
www.lothianrespiratorymcn.scot.nhs.uk
www.lothianrespiratorymcn.scot.nhs.uk
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Respiratory (COPD) MCN Annual Report 2008-2009
COPD is a disease without an obvious beginning.
Symptoms creep up on patients and may be put
down to
getting older,
so it may be
some time
before they
decide to ask
their GP about
them. In other
instances, a
person might
have a sudden
exacerbation
of their
symptoms
where they
become much worse. This might result in
admission to hospital as an emergency, so it may
be there where they first learn of their diagnosis
of COPD.
Lothian is divided into four Community Health
Partnerships (CHPs); West Lothian Community
Health and Care Partnership (CHCP), Midlothian
CHP, Edinburgh CHP and East Lothian CHP. While
it is the goal of the MCN to help standardise
respiratory care across all CHPs, there is some
local variation in how each one operates and the
services it offers, reflecting the different
communities they serve.
If a patient is admitted to hospital, they will go to
either the Royal Infirmary of Edinburgh, the
Western General Hospital or St John’s Hospital,
depending on where they live. These three
hospitals provide a range of respiratory services,
including diagnosis, treatment, education and
support. These services are delivered by
respiratory consultant physicians, respiratory
nurse specialists, respiratory physiologists and
members of the mutli-disciplinary team.
When a patient first presents to their GP with a
complaint of breathlessness, the GP will either
carry out a spirometry test to determine the
diagnosis or refer the patient for a spirometry test
elsewhere. In West Lothian CHCP and East
Lothian CHP, each GP practice has a spirometer.
In Edinburgh CHP and Midlothian CHP, only about
half of the practices have spirometers, so
the patient will sometimes have to travel to a
central location to have their test performed.
The MCN is working hard to encourage all GP
practices to purchase suitable spirometers and to
undergo training to become proficient in
administering and interpreting the test. There is
still work to be done to achieve this in all CHPs.
Once a diagnosis of COPD has been confirmed,
the patient’s GP will prescribe the appropriate
treatment and will review progress. In May 2009,
the MCN published Lothian guidelines for the
diagnosis and treatment of COPD based on
national guidelines. Well-attended educational
sessions were held in each CHP so the treatment
patients receive across Lothian should adhere to
these guidelines.
Pulmonary rehabilitation
Evidence has shown that one of the most
beneficial and cost-effective treatments for COPD
is pulmonary rehabilitation (see chart below).
These classes are led by a physiotherapist and
involve a multi-disciplinary team.
MCN patient representative Billy Wight says:
“Pulmonary rehabilitation helps people with
breathing difficulties to get the most out of life. It
increases your self-confidence and independence
and helps you to understand your disease. The
best thing is when you actually start mixing with
people like yourself and learning a bit more about
your illness - it makes it a lot easier to cope with
it.”
A few years ago, the only pulmonary rehabilitation
service available to patients was located in the
Royal Infirmary of Edinburgh. As a result, there
was a long waiting list, classes were only held
once a week and unless a patient was referred by
Patient performing spirometry
COPD Services in Lothian
7
Respiratory (COPD) MCN Annual Report 2008-2009
a consultant from either the Royal Infirmary of
Edinburgh or Western General Hospital,
pulmonary rehabilitation was not available to
them.
Within the last two years, this situation has
changed dramatically. With the help of Chest,
Heart & Stroke Scotland and NHS Lothian long-
term conditions funding, pulmonary rehabilitation
is now available in each CHP, operating to shared
quality standards and subject to evaluation.
East and Midlothian
There are four groups that meet twice a week for
six weeks. There are five possible venues
throughout these two CHPs. Ideally, each class
will have 12 patients and there is a follow-up
programme but as yet, no formal maintenance
programme.
Edinburgh
The Royal Infirmary of Edinburgh offers one
rolling programme, twice weekly for six weeks.
The classes involve cardiovascular training,
strength training and education sessions. A
follow-up and maintenance programme has still to
be developed. However, particular to Edinburgh,
there is a maintenance programme being piloted
at Leith Victoria Swim Centre. It consists of a
once-weekly session and this approach will be
evaluated upon completion.
Edinburgh also offers a community service that
started in September 2007. There are six rolling
programmes at three different sites across the
city. The follow-up programme is delivered at
quarterly intervals for one year, during which
walking tests and the
COPD questionnaire
are re-evaluated, as
well as recording
smoking history,
exacerbation
information and any
hospital admissions.
Edinburgh also offers a community respiratory
team, which is a home-based physiotherapy
programme aimed at preventing hospital
admissions through early identification of
problems, swift treatment and coordinated care.
West Lothian
Started in November 2007, the West Lothian
pulmonary rehabilitation programme was initially
funded for two years by Chest, Heart & Stroke
Scotland, but the West Lothian CHCP will now
provide continuing funding. There are currently
four programmes at two different venues that
provide classes twice a week for eight weeks.
The follow-up consists of a postal questionnaire
and a quality of life questionnaire at three and 12
months. There is also a return appointment at six
months to repeat the initial assessment, which
includes strength, endurance and the incremental
shuttle walking test.
Maintenance classes are supported by West
Lothian Leisure at any of their ten facilities across
West Lothian. Patients are referred via the
Exercise Referral Scheme and receive a
discounted rate of membership.
A new physiotherapist was recruited in February
2009 and West Lothian are hopeful they will be
able to expand their Respiratory Function Service
with the appointment of a respiratory technician
in the near future.
Other exciting things happening around the CHPs
include the Met Office project. This has been
piloted in East Lothian, with Midlothian planning to
participate this year. The Met Office monitors the
weather conditions and contacts registered COPD
patients with an automated speech-based
telephone call to warn them of weather conditions
that may aggravate their symptoms. There were
Patient and physiotherapist communication
is key to rehabilitation
“Pulmonary rehab helps people
with breathing difficulties
get the most out of life”
~Billy Wight ,
Patient Representative
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Respiratory (COPD) MCN Annual Report 2008-2009
650 patients
involved in the first
pilot year and the
numbers are
predicted to increase
to around 1000 for
the second year. So
far, based solely on
patient reports,
there has been a
36% reduction in
hospital admissions.
Robert Pow, an MCN
patient
representative
taking part in this
pilot finds the alerts
to be “quite
significant and
helpful.” More research and data are needed but
this appears to be a promising service.
In Edinburgh, a telecare project called Telescot is
under way. Telecare is the use of a range of
technologies to support those in a home or
community environment. Telescot is a programme
of research trials looking at the impact of
telemetry on a number of long-term conditions
including COPD. The programme is funded for
four years with funding and resources from the
Chief Scientist Office, the BUPA Foundation, NHS
Lothian, Edinburgh CHP, Scottish Centre for
Telehealth and Edinburgh Council. This trial aims
to recruit 300 patients with moderate to severe
COPD within Edinburgh CHP who have had a
hospital admission with an exacerbation of COPD
within the last 12 months. All patients will be
monitored over a 12-month period.
In the COPD trial, the researchers want to see if
telemetry systems will help prevent hospital
admissions, improve COPD control and quality of
life, and save patients and their clinicians' time.
To do this, researchers will compare two ways of
helping people with COPD to monitor their
condition.
The first way is for patients to get advice and
treatment from the community respiratory team
(CRT). This is a team of community respiratory
clinical specialist physiotherapists who run a
seven-day, rapid access, specialist service for the
management of moderate to severe COPD
patients in Edinburgh CHP.
The second is to provide this respiratory
physiotherapy service but also to use tele-
monitoring. A small computer in the patient’s
home prompts the patient to complete a health
survey each day. This includes the patient’s
responses to a symptoms questionnaire, oxygen
saturations and heart rate. Once a week they are
also prompted to record a peak expiratory flow
rate and weight measurement. This information is
immediately sent by broadband telephone line
(which will be provided) to a secure NHS
computer. Recordings will be monitored by the
CRT, who will get in touch with the patient if their
symptoms or readings suggest they may be
becoming unwell.
Patient's observations/symptoms, health-related
quality of life and service use will be measured at
the beginning and at the end of the trial, and the
data from the two groups will be compared.
A pilot study was completed in 2008 and since the
start of recruitment for the full scale trial in April
2009, over 50 patients have been referred. This is
in line with the researcher’s targets.
West Lothian is also taking part in two pilot
schemes. The South East Long-term Conditions
Partnership Project supports the requirements of
the three NHS Boards within the south east of
Scotland (Lothian, Fife and Borders) in their
development of a training framework for
supported self-management.
The Staywell Generic web-based self care
education programme, developed with InTouch,
aims to improve the quality of life for patients
living with long-term conditions and their carers.
It focuses on challenges faced by patients and
their carers over and above the medical aspects of
long-term conditions.
The Airways Support Group, affiliated with Chest,
Heart & Stroke Scotland is open to anyone
affected by breathing problems, including carers,
living in the St John’s Hospital catchment area.
The Breath Easy support group, affiliated with the
British Lung Foundation, provides support and
information for people living with a lung condition
and their carers, throughout the rest of Lothian.
Cardiovascular exercise is an
important part of pulmonary
rehabilitation
9
Respiratory (COPD) MCN Annual Report 2008-2009
One of the major projects the Respiratory (COPD)
MCN has undertaken this year is to produce
Lothian guidelines for COPD. Surprisingly, there
are no Scottish Intercollegiate Guidelines Network
(SIGN) guidelines for COPD and all the work
establishing evidence has been taken from the
National Institute for Clinical Excellence (NICE),
the Global Initiative for Chronic Obstructive
Pulmonary Disease (GOLD) and the British
Thoracic Society (BTS) guidelines. These guides
are comprehensive and authoritative and so we
were able to incorporate them as the backbone to
support our local Lothian guideline.
Despite being a common disease, COPD has a low
profile nationwide and is grossly under-diagnosed.
However, in the past few years, three initiatives
have come together to raise the profile.
• The pulmonary rehabilitation programme has
been expanded from being offered only at the
Royal Infirmary of Edinburgh to being
available in every CHP in Lothian
• The Scottish Enhanced Services Program
(SESP) has supported COPD care in Lothian.
SESP provides funding for health boards in an
initial phase (2007-09) to develop locally-
determined services in primary and
community care and identifies a number of
national service priorities, including pulmonary
rehabilitation for COPD
• The new managed clinical network for COPD
was established.
These three elements coming together have
galvanised activity and have made the need for
a COPD guideline all the more important. It was
essential for Lothian to set our own standards for
the care, diagnosis and treatment of COPD so the
system was coordinated and not a patchwork of
disparate parts.
The guidelines we have created are thorough, yet
short and practical, to make it easier for busy
professionals to understand and use the
information. To achieve this, the initial drafts were
sent out to a very wide audience including
doctors, nurses, consultants, physiotherapists,
pharmacists, managers from all over the region,
allied health professionals (AHPs) and voluntary
groups asking for their comments and advice.
Finally, and far from least, patients and carers
also commented upon content and layout.
This draft process went through about 12 phases
before we felt confident enough to finalise the
guidelines and approve them for publication.
The core of the guidelines emphasises the
symptoms, diagnosis and treatment of COPD.
However, sections are also included on how to
evaluate the benefit of the treatment given. The
guidelines include references to many other
agencies directly linked to COPD and involved in
service delivery, such as stop smoking services
and palliative care. There is a section devoted to
frequently asked questions which will evolve as
practitioners ask practical questions that would be
of interest to others.
We have provided telephone, e-mail and website
contact information for local professionals, patient
and carer support groups and national
organisations. The contact section is a valuable
reference point.
Finally, the appendices include a guide for the
treatment of exacerbations (a worsening of the
condition), a pulmonary rehabilitation referral
form and a patient self-management form.
Lothian COPD Guidelines
Cover page of the Lothian COPD Guidelines
10
Respiratory (COPD) MCN Annual Report 2008-2009
The guidelines will be reviewed on an annual basis
because agencies and medical data change over
time. This will ensure it is an accurate and up-to-
date resource for the medical community.
Once the guidelines were completed, our final
task was to get the information into the correct
hands so it would have the best possible impact
on the quality of COPD care. To do this, we
organised many meetings and presentations
across the Lothian local health partnerships
(LHPs) and CHPs. There were also open meetings
held across the region to educate attendees on
the MCN, the new guidelines, spirometry and
treatment. These “COPD Hot Tips and Red Flags”
events were a great success and attended by
almost 200 Lothian professionals. Feedback from
these events was very positive, with professionals
taking away valuable information to use in their
own practices.
The guidelines are available for download from
the MCN website at:
www.lothianrespiratorymcn.scot.nhs.uk
One of the treatment charts provided with the
Lothian COPD Guidelines
Patient taking a
spirometry test
11
Respiratory (COPD) MCN Annual Report 2008-2009
The spirometry and training action group met for
the first time in August 2008 and is chaired by
Anne Ritchie, practice nurse and practice
manager. Created as a result of feedback from
the first steering group, their remit is to ensure
the delivery of a spirometry service that is
patient-centred, efficient, effective and safe – in
line with Better Health, Better Care. In addition,
they will investigate ways of delivering training to
practice nurses, general practitioners and any
allied health professionals who offer spirometric
testing.
The quality of spirometry in GP practices
is often not as good as it should be. This
became apparent when Andy Robson,
senior clinical scientist, and Anne
Ritchie, led training sessions for practice
nurses and GPs. This lack of education is
also apparent when patients are referred
to the respiratory function service,
because often the referral is
unnecessary and the patient turns out
not to have COPD.
The ideal solution would be to have a
diagnostic spirometry service across
Lothian which would mean that only
annual reviews of spirometry would need
to be done in primary care. This would
free up spirometry resources and allow
all new diagnoses to be performed by
fully qualified and experienced
professionals. Right now, we are
focussing on making the best use of the
current resources available to us.
Training
A training needs analysis has been completed,
with the survey going out to practice nurses
across Lothian and an abridged version going to
practice managers. This was done in an effort to
establish what barriers, if any, there are to
practice nurses accessing training.
The results of this will be available in the form of
a short report soon. The outcome though, will
most likely be the introduction of training days for
all interested staff which will cover a variety of
topics. We will work with our colleagues in the
other MCNs to achieve this. These will be in
addition to the courses already available.
The Lothian Practice Nurse Respiratory Group has
been reborn and now extends its invitation to all
nurses in both primary and secondary care who
have an interest in respiratory medicine. This
group is sponsored by AstraZeneca, Boehringer
Ingelheim, Chiesi, GlaxoSmithKline and Pfizer,
under the umbrella of ABPI Scotland. The first of
these meetings was held in April and the topic
was breathlessness. It was attended by a good
cross-section of nurses. An invitation was also
extended to the respiratory technicians.
The launch of the Lothian MCN COPD guidelines
offered the opportunity for further training. Three
very successful events were well attended by a
wide variety of disciplines within COPD care.
Attendees participated in an educational session
specifically on spirometry administration and
interpretation. Feedback suggested this was an
interesting and informative lesson for most and a
good refresher for others.
Performing spirometry correctly takes effort from
both the patient and the practitioner
Focus on … Spirometry and Training
12
Respiratory (COPD) MCN Annual Report 2008-2009
The respiratory function service within the Royal
Infirmary of Edinburgh and the Western General
Hospital has worked closely with the MCN over
the last year, especially with the spirometry and
training action group.
We are working with primary care to improve the
diagnostic usefulness of the direct access
spirometry service. An audit has revealed that a
large number of the patients being referred for
spirometry, as well as many of the patients sent
for repeat spirometry tests, did not actually have
COPD. This means that many patients were not
being effectively diagnosed and treated, which
has time, resource and financial implications for
all involved.
To combat this problem, we have adapted the
way in which we report the results of spirometry
tests to the patient’s GP. In the future, the report
will state clearly if the Quality and Outcomes
Framework (QOF) definition of COPD has been
fulfilled and will also refer to the COPD guidelines
that were published by the MCN earlier this year.
The service is involved in training practice nurses
who wish to provide a spirometry service within
their own practice. This will greatly benefit the
patients who will no longer have to travel to a
hospital laboratory for their regular monitoring
tests.
We also act as a central point of contact for
information if a primary care centre requires
information about performing spirometry and are
always happy to discuss result interpretation. We
are committed to supporting high standards of
spirometry in Lothian and are actively pursuing
this goal.
Dr Andrew Robson
Senior Clinical Scientist
Other highlights this year...
We are pleased to announce that Dr Ninian Hewitt
was officially appointed as the clinical lead for the
MCN in September 2008. He has been
tirelessly working as our acting clinical lead since
the inception of the MCN in March 2008 and we
are very happy to welcome him aboard in an
official capacity.
MCN manager, Dr Alison Bramley, along with Dr
Ninian Hewitt, are members of the National
Respiratory MCNs Steering Group. This group
consists of respiratory MCNs throughout Scotland
and aims to be an advisory group to the Scottish
Government.
The MCN has supported the Chest Voices pilot
offered by Chest, Heart & Stroke Scotland to
support patients and carers working with the NHS
in giving their views and contributing to the
development of new services. The project has four
aims:
• To develop a network of respiratory patient
and carer representatives who will receive
regular newsletters containing project
updates, details of opportunities to get
involved and information about training events
• Provide people affected with respiratory
conditions and their carers with the skills and
confidence to work with the NHS to improve
local respiratory services
• Empower patients and carers by giving them
access to information, training and support
• To encourage partnership working between
the NHS bodies and the patient/carer network.
The initial pilot, held on 5th February 2009, went
very well and the patients and carers who
attended were very enthusiastic. There are a
further three pilots and an annual conference
planned.
Patient representative, Patricia Dunnigan says:
“The Chest Voices training was mainly for people
who either have COPD or relatives of those who
do and it was very interesting to hear their
experiences of how they deal with it. The staff
who ran the training were very good and very
helpful. They presented a hierarchy of how the
NHS works. It was very straightforward and
definitely increased my understanding.”
Comment from the Respiratory Function Lab...
“The Chest Voices training...definitely
increased my understanding.”
~Patricia Dunnigan,
Patient Representative
13
Respiratory (COPD) MCN Annual Report 2008-2009
The pulmonary rehabilitation action group brings
together the providers of pulmonary rehabilitation
across Lothian and interested stakeholders. The
group has met three times since December 2008
following a preliminary meeting between Morag
Barrow, AHP Manager (group chair), Dr Alison
Bramley, Dr Ninian Hewitt and Susan McNarry
(physiotherapist,
pulmonary
rehabilitation
Edinburgh CHP).
The primary
objective of the
group is to ensure
all pulmonary
rehabilitation
programmes across
Lothian operate a
similar programme
with common
standards, referral
criteria and
streamlined
policies.
The physiotherapy
leads for each CHP
throughout Lothian
agreed to meet separately to discuss professional
issues (such as methods of exercise testing).
During the inaugural meeting, there was a lot of
shared learning about what each pulmonary
rehabilitation programme service provided and
the group identified a number of projects to be
undertaken. Local variations across the sites were
also noted.
Referral to pulmonary rehabilitation
The referral process and criteria for inclusion in a
pulmonary rehabilitation programme were
identified as areas which needed clarification for
service users. Although there had been previous
marketing of the relatively new community
programmes, some confusion existed as to how
and where to refer patients to these services. It
was also clear that there was some variation in
referral criteria throughout Lothian and that these
should be streamlined and aim to be more
inclusive.
To date:
• Referral processes have been clarified and
information on all community programmes has
been made available to secondary care
(referrers, clinics).
• Referral criteria have been revised, with all
programmes now using the same inclusion
criteria. This recognises that the degree of
impairment caused by the disease may be
disproportionate to disease severity as
determined by spirometry. This information is
currently being circulated to all referrers.
• Referral forms: Not all programmes are able to
receive electronic referrals via SCI Gateway, a
national system that integrates primary and
secondary care, but for those that do, there
was consensus that the current format does
not provide sufficient clinical information,
particularly when trying to prioritise patients
according to need. The group has agreed what
information is required and is currently
revising the electronic referral system.
• Referral pathway: this has been streamlined
across Lothian. Some local variations exist but
where possible this has been standardised.
Audit of pulmonary rehabilitation services
Boehringer Ingelheim has provided funding to
audit the pulmonary rehabilitation services across
Lothian. The audit will be retrospective and will
include core contents of the various programmes
such as:
• attendance and drop-out rates
• exercise capacity
• quality-of-life measures
• comparison of hospital and community
programmes and
• follow-up services.
There is currently wide variability in what follow-
up can be provided by individual services. A pilot
of 50 patients from Leith Community Treatment
Centre is currently underway to ascertain how
easily information can be extracted. Once this
preliminary investigation is completed, the audit
will be extended throughout Lothian. The audit is
expected to be completed by December 2009. It
is anticipated that the outcomes will influence
future programme provision.
Patient in pulmonary
rehabilitation class
Focus on … Pulmonary Rehabilitation
14
Respiratory (COPD) MCN Annual Report 2008-2009
Focus on … Supported Self-management
Early in the life of the MCN, it was decided that
the concept of supported self-management was a
very important one to consider.
To cope with long-term medical problems, it
seems self-evident that the patient and
professional need to work together. They need to
share the same goals and vision in order to
minimise the problems caused by the disease and
to maximise the patient’s everyday coping
abilities. However, research in this area shows
that current self-management plans have little
discernible effect on the actual quality of care.
The goal of the
supported self-
management
action group is to
create a workable
supported self-
management plan
that would have a
positive impact on
the quality of care
and be helpful to
both patients and
professionals.
This group was one of the first action groups to
meet and the first meeting was extremely well
attended by a diverse group of people. There
were representatives from hospitals, community,
voluntary groups, patients, carers, leisure
managers, smoking cessation and local
authorities. This first meeting was a challenge
because even though each of these members
brought with them excellent ideas and
perspectives, it was difficult to define the
common ground. However, out of this challenge,
grew an idea to include all of the essential
elements the group was discussing and turn them
into a coherent whole. It was agreed that having
every COPD care service identified and listed in a
map format would help to clarify what is available
and how each service can be accessed.
Working with the long-term conditions steering
group has also been fruitful and has helped to
clarify confusing terminology. Until now, there
have been several terms used to describe self-
management, each one having a slightly different
definition. Together, the long-term conditions
group and the MCN have agreed to use only two
terms within Lothian:
• “Anticipatory care plan” will refer to the plan
made by a health care professional for their
patient to help avoid complications with the
disease and to maintain good health. This
term will only be used between health care
professionals.
• “Self-management plan” will refer to a plan
created by both the patient and the health
care professional to aid the patient in
managing their own disease.
The supported self-management map and the
clarified definitions, have helped us to move
forward towards the overall aim of developing a
source of relevant, accessible information for
patients and their carers. This work will link into
the new COPD Manual project which is in the
planning stages (see page 18).
A patient discusses a self-
management
plan with his doctor
“I have so far been at four
meetings and am struck by the
persistence of the medical people there … to home
in on what can and needs to be done, and can if
possible be improved upon, to make the life of the
COPD patient a bit more comfortable and—very
important—keep them out of hospital.”
Mary Robb
Carer representative
“Being part of the MCN has given me a bit more
understanding of what’s going on in medical
terms. Its been interesting to find out more about
COPD and how we are taking forward services. It
has also helped to know what things are available
for COPD.”
Carol Ames
Patient representative
15
Respiratory (COPD) MCN Annual Report 2008-2009
Focus on … Oxygen Therapy
The oxygen therapy action group is chaired by
Professor Bill MacNee, consultant respiratory
physician at the Royal Infirmary of Edinburgh.
The group’s multi-disciplinary membership
includes respiratory physician specialists, nurses,
pharmacists, and representatives from the
pulmonary function laboratory and Scottish
Healthcare Supplies.
The remit of the group is to produce a standard
guideline for the clinical assessment, prescription
and management of patients with COPD receiving
long-term oxygen therapy at home.
The purpose of the guideline, principally for
primary care, is to focus on the indications for
long-term oxygen therapy and the role of
ambulatory (portable) oxygen for these patients.
A document was produced following a review of
existing guidelines which were then modified for
local use. The group recognised that there was
an Oxygen Review Group within the Scottish
Government Health Department who would report
on service delivery for domiciliary oxygen and
therefore did not include detailed service delivery
plans within the
guideline.
Patient follow-up
is discussed
within the
document and in
an appendix. It
details that
patients should be
visited at home
within four weeks
and again at six
months. It also lists the aims of each visit. There
is information included to clarify when a specialist
referral is needed.
In an appendix to the guidelines, there is a
summary explaining how to assess for long-term
oxygen therapy. This has been produced primarily
for secondary care.
These draft guidelines are still a work in progress
and have been distributed for consultation to the
MCN Core Group.
Preparing an oxygen cylinder
The Lothian Respiratory (COPD)
MCN has received funding from
a number of different places.
The Scottish Government gave
the MCN £46,000 over two years
to contribute towards a self-
management project. The MCN is currently
considering using this funding to develop a COPD
Manual, similar to that used for heart patients, to
support patients throughout the pathway of
COPD. (See page 18).
Lothian NHS Board has contributed £44,000 over
the first two years of the MCN.
The MCN is also partly funded by a consortium of
five pharmaceutical companies working together
under the banner of the Association of British
Pharmaceutical Industries in Scotland (ABPI
Scotland). The five companies involved are
AstraZeneca, Boehringer Ingelheim, Chiesi,
GlaxoSmithKline and Pfizer. A “Framework of
Understanding” between NHS Lothian and the five
companies involved has been developed. This
document includes sections on governance
arrangements and data and patient
protection. Each company will give
£11,000 over two years, providing a
total of £55,000.
Over halfway into this initial two-year
period, the partnership with ABPI has
been fruitful. In addition to their
financial contribution, they have been
supportive in building and realising ideas.
The Executive Management Team has agreed that
NHS Lothian will meet the full cost of the MCN on
a recurring basis from March 2010.
Financial Snapshot
16
Respiratory (COPD) MCN Annual Report 2008-2009
The MCN’s quality assurance action group has met
three times with Dr Ken Black, public health
consultant, as the chair. The availability of data
describing COPD services was reviewed and the
group discussed how to go about identifying
quality standards to include in a quality assurance
programme. The MCN will need this programme in
place in order to be accredited by NHS Quality
Improvement Scotland (NHS QIS).
NHS QIS is currently
working on standards for
COPD and several members
of the MCN are on its
working groups. The draft
standards are expected for
consultation by late summer
2009 and to be published
around March 2010. The
quality assurance action
group will meet again once
these are issued, to discuss
how these can
be monitored
locally.
The missing millions
We know one of the problems with
COPD is the ‘missing millions’
identified by the British Lung
Foundation. Less than 2% of the
population is recorded on GP
registers as living with COPD, but
the expected prevalence may be
more than 3%. The incidence of
newly-identified COPD cases is
about 180/100,000 of the
population from research evidence
and we can use these figures for
planning services.
The Royal College of Physicians
and British Thoracic Society national audit
The acute services in the Western General
Hospital and the Royal Infirmary of Edinburgh
took part in the third round of this national COPD
audit in 2008. Previous national audits of acute
COPD care in 1997 and 2003 highlighted the
limitations and variability of COPD management.
The audit aims to:
• Enable units to compare their performance
against national standards
• Identify resource and organisational factors
that may account for observed variations in
outcome
• Facilitate improvement in the quality of care
• Identify changes since the 2003 national COPD
audit.
Each participating hospital was given a report of
their own results in comparison to national
averages. In Lothian, the MCN quality assurance
action group asked for a summary of these
findings together with suggested actions to
improve future results.
The findings showed some differences in practice
between the two hospitals. A number of these
related to the recording of patient information
which is important in their management. The
audit also revealed a difference in the number of
patients being selected for the early discharge
scheme that is available in Edinburgh.
These outcomes are being
discussed in detail by the
respiratory consultants in the
Royal Infirmary of Edinburgh and
Western General Hospital. They
will respond with what needs to
be done to produce
improvement. Their suggestions
will be taken on board by the
local quality improvement team.
The survey also looked at the
provision of services across the
UK. Lothian came out well in
this analysis with good access to
pulmonary rehabilitation
schemes which meet the
standards set, and good access
to early supported discharge.
Quality Outcomes Framework
In the GP’s contract, some practice income is
connected to the achievement of certain quality
standards described by the Quality Outcomes
Framework (QOF). This has proven to be a
powerful incentive to improve care related to
prevention and treatment of several important
diseases and several of these standards are
related to COPD.
MCN action group discussion
Measuring What We Do
17
Respiratory (COPD) MCN Annual Report 2008-2009
Admissions for acute exacerbations of COPD,
HEAT target
HEAT targets are a core set of Scottish
Government objectives, targets and measures for
the NHS. HEAT stands for:
• Health improvement
• Efficiency and governance improvements
• Access to services and
• Treatment appropriate to individuals.
In line with the government’s HEAT targets, one
of the aims of the MCN’s work is to reduce the
number of patients who require frequent
admission to hospital for COPD. There is a 2%
target reduction in the rate of admissions to
hospital of patients with a primary diagnosis of
COPD, asthma, diabetes or CHD between 2006/07
and 2010/11. This is to be delivered by March
2011 through a variety of mainly CHP-based
initiatives to support people with the target
conditions.
Local data analysis shows that COPD is the reason
for many hospital admissions. It is because of this
that action on COPD has been prioritised,
including provision of pulmonary rehabilitation
and early intervention on COPD exacerbations.
This work is being carried out in partnership with
the secondary care respiratory service and
primary care, and will be further supported by the
MCN.
Crude rate of COPD admissions, Lothian Residents, all ages 2003/04 - 2008/09
0
50
100
150
200
250
300
350
400
450
500
2003/04 2004/05 2005/06 2006/07 2007/08 2008/09
FYE
Admissions (crude rate per 100,000
population)
The target is to reduce hospital admissions due to long-term conditions, including COPD, by 2% by 2010/1011
18
Respiratory (COPD) MCN Annual Report 2008-2009
The MCN will:
• Review the wide variety of differing
information available to patients and identify
a preferred list of patient information leaflets
agreed with patients and clinicians and advise
clinics and GPs of these
• Evaluate and follow up on telehealth
opportunities
• Evaluate use of the COPD guidelines
• Assist Lothian Stop Smoking Services in
accessing patients wanting to quit
• Develop the MCN quality assurance
programme and pursue accreditation of the
MCN following NHS QIS guidance
• Take part in NHS QIS COPD standards setting
• Begin discussions with other respiratory
services and expand remit beyond COPD.
The Spirometry and Training action group
will:
• Streamline the referral process for spirometry
by distributing a revised referral form, flow
chart and letter to all GPs. The updated
referral form will ask for specific information
needed by the Respiratory Function Lab to
determine if the referral is valid. The flow
chart will be a quick reference guide for
actions to be
taken based upon
the patient’s
spirometry results
• Specifically remind GPs to remove patients
with no airflow obstruction from the COPD
register. This will help to free up resources
and maintain accurate records
• Continue to make the best use of the existing
spirometry service
• Standardise spirometry training.
The Pulmonary Rehabilitation action group
will:
• Investigate creating a COPD Manual using the
£46,000 from the Scottish Government
earmarked for a self-management project
• Streamline existing information for clarity and
accuracy
• Create the COPD Manual in modular form to
increase relevance to where the patient is
along the COPD disease pathway
• Focus the COPD Manual on the point of
diagnosis, pulmonary rehabilitation,
maintenance, and advice for self-
management of exacerbations
• Investigate follow-up care after completion of
a pulmonary rehabilitation programme
• Provide evidence-based and standardised
follow-up care across all programmes in
Lothian.
The Supported Self-management action
group will:
• Combine work with the pulmonary
rehabilitation group on the investigation and
publication of a COPD Manual as described
above.
The Oxygen Therapy action group will:
• Expand the oxygen therapy guidelines to
include other chronic lung conditions in which
oxygen levels are low and for paediatric long-
term oxygen therapy
• Carry out an audit of the assessment and
prescription of long-term oxygen therapy in
Lothian.
Looking to the future of the MCN
Our Plans for the Coming Year
19
Respiratory (COPD) MCN Annual Report 2008-2009
Appendix 1
The nine core principles of an MCN: Self-assessment When the Lothian Respiratory (COPD) MCN was founded, it was done so with the nine core principles
of an MCN firmly in mind. These core principles were outlined in a Scottish Executive Health
Department letter and explain what is necessary for an MCN to help patients, carers and staff work
together to improve services.
No. Principles of MCNs
(as specified in NHS HDL(2007) 21)
Met/Partly Met/Not Met
1 Each Network must have clarity about its
management arrangements, including the
appointment of a person, usually known as a Lead
Clinician, who is recognised as having overall
responsibility for the functioning of the Network. Each
Network must also produce an annual report to the
body or bodies to which it is accountable, and that
annual report must also be available to the public.
MET
Lead clinician and manager in post.
Annual report for public in
preparation for June 09.
2 Each Network must have a defined structure which
sets out the points at which the service is to be
delivered and the connections between them.
MET
Lothian COPD Guidelines published.
3 Each Network must have an annual work plan, setting
out, with the agreement of those responsible for
delivering services, the intended service
improvements and, where possible, quantifying the
benefits to services users and their families.
MET
Work plan approved by NHSiL
Planning Group December 08
4 Each Network must use a documented evidence base,
such as SIGN guidelines where these are available,
and should draw on expansions of the evidence base
arising through audit and relevant research and
development. All professionals who work in the
Network must practice in accordance with the
evidence base and the general principles governing
Networks.
MET
COPD Guideline based on Global
Initiative for Chronic Obstructive
Lung Disease (GOLD) 2008.
Available from:
http://www.goldcopd.org
5 Each Network must be truly multi-disciplinary/multi-
professional and there must be clarity about the role
of each health professional in the Network, particularly
where new or extended roles are being developed to
achieve the Network’s aims.
MET
All action groups have multi-
disciplinary membership from across
Lothian, and patient/carer
membership, where needed.
6 Each Network should include representation by service
users and the voluntary sector in its management
arrangements, and must provide them with suitable
support in discharging that function. Each Network
should develop mechanisms for capturing service
users’ and carers’ views, and have clear policies on
improving access to services, the dissemination of
information to service users and carers, and on the
nature of that information.
MET
Public involvement is embedded in
all MCN activities and they are fully
supported to give their views
through representation on action
groups.
‘Chest Voices’ piloted in Lothian.
20
Respiratory (COPD) MCN Annual Report 2008-2009
Patients training in pulmonary
rehabilitation class
7 Each Network must have a quality assurance
programme which has been developed in
accordance with the arrangements set out by
NHS Quality Improvement Scotland (NHS
QIS).
NOT MET
Working towards accreditation in
second year.
NHS QIS COPD standards are under
development.
8 Network’s education and training potential
should be used to the full, in particular
through exchanges between those working in
the community and primary care, and those
working in hospitals or specialist centres. All
Networks should ensure that professionals
involved in the Network are participating in
appropriate appraisal systems which assess
competence to carry out functions delivered
on behalf of the Network, and that the
participating clinicians are involved in a
programme of continuous professional
development.
PARTIALLY MET
Survey of training needs done.
Spirometry and COPD training at
guideline launch events. Training
plans being developed.
Continuing professional development
in place and monitored by
operational management.
9 There must be evidence that the potential for
Networks to generate better value for money
has been explored.
MET
Actively working on making better
use of existing spirometry resources.
Clinical Lead, Dr Ninian Hewitt, discussing
supported patient self-management and
how to reduce hospital admissions
21
Respiratory (COPD) MCN Annual Report 2008-2009
The MCN membership consists of over 100 people from a wide array of disciplines related to COPD
care. It also includes patient and carer representatives which enable the MCN to have a first hand ac-
count of living with COPD and the effect health care measures have on their daily lives.
Appendix 2
MCN Membership
Surn
ame
Forename
Positio
n
Steerin
g G
roup
Core G
roup
Spiro
metry
and
Training
Pulm
onary
Rehabilita
tion
Supporte
d
Self-m
anagement
Oxygen Therapy
Quality
Assurance
COPD G
uidelin
es
Adams Jill Respiratory physiotherapist X
Ames Carol Patient representative X X
Amos Gillian Senior health promotion specialist X X
Barrow Morag Allied health professional manager X X X
Bebbington Carol Primary care practice manager X
Bews Michael MCN policy manager, British Lung Foundation X X
Bickler Carl Long-term conditions project manager X
Bracher Kim Specialist nurse X X
Bramley Alison MCN manager X X X X X X X X
Brown Denise Specialist nurse X X X X
Brown Shena Specialist nurse x x x
Bruce Sandra Charge nurse X
Bryan Rose General practitioner X X X
Burns Ruth Long-term conditions project manager X X
Candlish Christine In patient team leader physiotherapist, SJH X
Christie Elspeth Specialist nurse X X X X
Clapperton Karen Stop smoking facilitator X
Cochrane Caroline Clinical psychologist X X
Connelly Sally Support pharmacist, primary care and community X
Connelly Helena Stop smoking services manager X X
Corcoran Janet Lead practitioner, professional and role development X
Cottrell Gill Primary care practice manager X
Crookes Susan Allied health professional X X
Cunningham Gillian Clinical nurse manager X
Currie Paul Strategic programme manager X X X
Daniell Liz Respiratory physiotherapist X
22
Respiratory (COPD) MCN Annual Report 2008-2009
Surn
ame
Forename
Positio
n
Steerin
g G
roup
Core G
roup
Spiro
metry
and
Training
Pulm
onary
Rehabilita
tion
Supporte
d
Self-m
anagement
Oxygen Therapy
Quality
Assurance
COPD G
uidelin
es
Deas Andrew Information analyst X
Dickson Chris West Lothian leisure X X
Dietrich Richard Head of British Lung Foundation, NI and Scotland X
Dodds Hazel Long-term conditions project manager X
Douglas-Keogh Shirley Clinical nurse manager X
Duff Lesley Stop smoking specialist X
Dunnigan Patricia Patient representative X X
Fox Amanda Scottish primary care collaborative project manager X
Gardner Juanita Physician assistant X X
Gardner Morag Operational manager, acute hospitals X
Gibson Neil BOC Gases representative X X
Gibson Judy Occupational therapist manager X X
Gordon Callum Operational manager, acute hospitals X
Greening Andy Consultant respiratory physician X X X
Grieve Ross Lifestyle services manager, Thistle Foundation X
Groom Laura Respiratory physiotherapist X X X
Hacking Belinda Clinical psychologist X
Hamilton Elane Clinical support worker, RIE X
Harborow Genevieve Respiratory physiotherapist X
Lee Karen Boehringer Ingelheim representative X
McNarry Susan Respiratory physiotherapist X X
Milne Alison Practice nurse X
Montgomery Brian Associate medical director, NHS Lothian X
Norby Elizabeth Chest, Heart & Stroke Scotland X
O’Neil Carolyn AstraZeneca representative X
Oxenham David Palliative care MCN manager X
Pentland Jo Specialist physiotherapist X X
Pollock Wendy Respiratory physiotherapist X
Pow Robert Patient representative X
Pringle Richard Pfizer representative X
Read Donna Specialist nurse X X X
Reid Peter Consultant respiratory physician X X X X
Richards Barry Long-term conditions project manager, Midlothian CHP X
Ridley Sarah Physiotherapy clinical specialist X
Ritchie Anne Practice nurse and manager X X X X
23
Respiratory (COPD) MCN Annual Report 2008-2009
Contact Details Should you wish to be more involved or simply make contact with the Respiratory (COPD)
MCN, we would be delighted to hear from you.
Respiratory (COPD) MCN
Lothian NHS Board
Deaconess House
148 Pleasance
Edinburgh
EH8 9RS
0131 536 9443
www.lothianrespiratorymcn.scot.nhs.uk
Surn
ame
Forename
Positio
n
Steerin
g G
roup
Core G
roup
Spiro
metry
and
Training
Pulm
onary
Rehabilita
tion
Supporte
d
Self-m
anagement
Oxygen Therapy
Quality
Assurance
COPD G
uidelin
es
Robb Mary Carer representative X X
Robson Andrew Senior clinical scientist X X
Ross Alan GlaxoSmithKline representative X
Scott Jenny Pharmacist X X
Short Allister Strategic programme manager X
Somerville Margaret Chest, Heart & Stroke Scotland X
Sparrius Clair Respiratory physiotherapist X
Stewart Ewen Edinburgh CHP lead clinician X
Thayne Kathleen MCN coordinator X X X X X X X X
Thomson Ann Respiratory physiotherapist X X
Turnbull Lynne Respiratory physiotherapist X
Watson Fiona CHP clinical director X
White Wendy Respiratory physiotherapist X X
Wight Billy Patient representative X X
Zuckert Deborah Prescribing support pharmacist X
Published July 2009
Respiratory (COPD) MCN Annual Report 2008-2009