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Respiratory (COPD) MCN Annual Report 2008-2009

Annual Report

2008-2009

Lothian Respiratory

(COPD)

Managed Clinical Network

2


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

3


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

4


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


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


6


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


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

8


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


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


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:


One of the treatment charts provided with the

Lothian COPD Guidelines

Patient taking a

spirometry test

11


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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