NORTH WEST PATIENT ENGAGEMENT AND EMPOWERMENT PROGRAMME - building a
model for meaningful involvement of patients in improving respiratory services in North West
Background
In September 2011, North West Respiratory Clinical Pathway Team(NWRCPT) with support
from British Lung foundation (BLF)organised a NW Patient Listening event for patients with
respiratory conditions. Representatives (patients and carers) from most PCTs in NW attended
the day. The day was supported by Inspiration NW and following the event, a report1 was
published. The report highlighted 10 key messages2 Respiratory patients wanted their health
care professionals to know. These key messages were distributed to the Respiratory
Community in North West.
Discussions with patient representatives highlighted the current challenges in patient
engagement. Representatives felt that it was not meaningful and empowering. When they
represented patients on board of PCT/CCG structures they did not feel empowered as they
felt like outsiders. Amongst other things, they did not understand the ‘language that NHS uses’
(what does a commissioning cycle mean to a patient representative?)
Patient
engagement
in service
redesign
Service
Delivery
Service Delivery
Patient
engagement
in service
redesign
Service Delivery
Interviews
Surveys
Missing Link - Continuous user/patient and community involvement
Figure 1: Current Patient engagement cycle
Introduction
Demonstrating meaningful involvement and shared decision making with patients and the
public is a real challenge for commissioners in the NHS. Meaningful involvement is however a
key enabler to efficiency improvements in quality, innovation, productivity and prevention.
1
http://www.inspirationnw.co.uk/includes/uploads/file/Inspire/Listening%20to%20your%20voice%20%2021%20Sep%202011%20patient%20%20listening%20event-v1.pdf
2
http://www.inspirationnw.co.uk/includes/uploads/file/Inspire/10%20messages%20your%20Respiratory%
20patients%20want%20you%20to%20know%20flyer-%20Nov%202011.pdf
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Following the patient ‘Listening Event’ for patients with respiratory conditions in September
2011, the British Lung Foundation, North West Respiratory Clinical Pathway team and
Inspiration North West came together to look at how respiratory patients in the NW can best
be supported to ensure that they get the agreed NW COPD treatment standards when they
visit any respiratory service in the North West. One way is through more structured and
meaningful involvement with commissioners about the treatment and care standards they
should expect as part of any shared decision making process. The other way is through
defining in plain language what these NW Standards were for COPD, that met the current
guidelines.
Patients and service providers use ‘COPD patient passport’ at every
consultation
Service Delivery – towards excellent patient outcomes
North West Patient Leaders supporting service improvement through continuous
engagement
Through BLF support, patient leaders engage with local communities and provide the
feedback to service managers and CCG commissioners to improve outcomes.
Figure 2: NW Patient engagement and empowerment programme
This paper outlines how both initiatives are helping North West engage and empower its
service users.
1. Patient Leader programme
To build meaningful involvement of patients into the commissioning process, the North West
Respiratory team along with British Lung foundation has piloted an approach to identify one
patient leader for each CCG in North West who will act as a local resource. North West has 32
CCGs across Merseyside, Cheshire, Greater Manchester and Lancashire.
Methodology
Role definition
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The primary focus of the Patient Leader role is that of a volunteer representing their
locality/community, working in collaboration with Clinical Commissioning Groups and other
NHS bodies/interested parties, with the Patient Leader explaining the needs of respiratory
patients and identifying best practice examples (and providing a much needed, articulate
patient voice). These volunteers (patient leaders) work in partnership with the hospitals,
CCG’s and other parts of NHS to improve patient experience, and patient outcomes with
support from BLF.
Identifying patient leaders
For the pilot programme a person specification was prepared and shared with all Breathe Easy
groups in North West. Applications were invited from Breathe Easy chairs who have been
active in their localities. Many BLF user representatives applied and 11 were selected to be the
pilot cohort for the NW Patient Leader programme.
Embedding patient leaders in the NHS structure
The focus of the Patient Leader programme is to provide ongoing engagement of patients to
CCGs and providers. Hence it became crucial to create links between the identified patient
leaders and CCG commissioners. These links were facilitated both by BLF and NWRCPT. Each
CCG commissioner who had a patient leader on the programme was invited to attend the
training days along with the patients. After the training was complete the patient leaders met
with their CCG commissioners to understand how the commissioners wanted to engage them
in their work. BLF has committed to support the Patient Leaders in engaging with their
communities through local/cluster level patient listening event.
Defining training needs and delivering the training
Oakridge Training and Consulting worked with the BLF and NWRCPT to design and deliver
training for the initial pilot 11 volunteers. The training consisted of an induction event in April
2012– outlining the role of the Patient Leader, changes to NHS and training requirements. This
was followed by two days of skills training, covering topics such as How to communicate
clearly, How to be assertive (not passive or aggressive), How to influence others, How to work
in teams, How to play and positive role in meetings, and How to be confident. The design of
the training ensured that the Patient Leaders were competent in their role
Results
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Training days
The training was very well received (and the Patient Leaders showed high levels of
commitment and enthusiasm for their role).
Feedback from the Patient Leaders following the training has been excellent; they are highly
motivated, committed and appreciative for the investment in their training.
Feedback from NHS management and clinicians have recognised the positive changes in
Patient Leaders behaviour (being more effective and adopting a more collaborative/more
effective approach to working together to identify and address issues).
Post-training
Post training meetings were organised by BLF and NWRCPT of the patient leaders with their
CCG commissioners and/or clinical leads. Patient Leaders are attending NHS meetings
regarding service provision and they are attending BLF meetings to gather patient experience
information, communicate news, and share best practice in how to communicate and
influence others.
This engagement has led to better working relations.
‘I have been a Breathe Easy Chair for 10 years but the impact/engagement I have had in the
last year is more than what I have done in the last 10 years – Patient Leader, North Lancs’
Patient Leaders network
The patient leaders trained in April-Mary 2012 have come together to discuss their success
stories and share learning at a follow up event in September 2012. The network of patient
leaders thus created support each other in local work.
Adoption by other regions
Representatives of the BLF from London attended the North West training sessions and have
commissioned training in London, the South East, and South Central. Patient Leader Training
has also been commissioned in the Midlands. By December 2012 there are circa 50 Patient
Leaders throughout these regions, trained, attending NHS meetings, and working to ensure
that COPD and Asthma patient’s experiences are communicated to service providers.
The primary benefits of this project are:
1. To improve communication between patients with COPD and Asthma and the service
providers (NHS/CCG’s)
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2. To improve service provision (addressing areas of poor service provision and sharing
best practice, ensuring CCG’s have the opportunity to hear and understand clear key
messages of patients experience’s)
3. Improved quality of life for patients with COPD and Asthma
4. Reduce admissions and cost of provision of health care to COPD and Asthma
Next steps
Following the training and embedding of the first 11 patient leaders, BLF and NWRCPT are
now investing in ensuring that NW has one patient leader for each CCG in the North West –
total of 32. The training days for the remaining 21 patient leaders are being organised in
February – March 2013
2. North West COPD Passport – 7 steps to best COPD care
Self-care is an important component of national COPD guidelines and strategy yet little is
known about the key messages patients and carers need to enable them to engage, and to
drive appropriate standards of care. We worked with patients and carers to develop the COPD
passport. The passport informs patients of the markers of a quality service and empowers
them to engage in self-care interventions that can release value.
Methodology
Patients and carers from 24 localities across NHS North West were invited to attend an
interactive networking event facilitated by service experience experts. At the event personal
reflections of experience and feelings were captured and shared in table top discussions to
identify common themes and differences. A core pathway was then developed and used to
engage whole group discussion on the development of key messages. The resulting 10 key
messages were then mapped to national COPD guidelines, standards and strategy and refined
into the seven steps of the COPD patient passport. The passport was used to measure
adherence to quality standards – including self-care interventions as experienced by patients.
7 steps to best COPD care:
I HAVE COPD
1. I have had my diagnosis confirmed by lung function test performed by a qualified person.
2. I feel supported to manage my COPD. I am actively involved in my care and have the
opportunity to discuss how I wish to be treated.
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3. I have been regularly offered help and support to stop smoking.
4. I know the importance of keeping active and have been offered the opportunity to improve
my activity through exercise and pulmonary rehabilitation if appropriate.
5. I know how and when to take my medicines, and feel able to use my inhalers and other
medicines properly.
6. I have a written action plan, rescue medication and know when and how to use them.
7. I see my doctor or nurse routinely at least once a year for review of my lung function,
medicines and inhaler technique, breathlessness, activity and oxygen levels, flu vaccination
and my action plan.
Results:
100,000 passports have now been printed and are being distributed to CCGs/service providers
in the NW region. The various ways in which they are distributed include:

Through CCG commissioners who want their surgeries to hand it out to COPD patients

Through Hospital consultants and nurses at out-patient consultations

Through Pulmonary Rehabilitation and Oxygen Service providers
Benefits:

Provides insight into patient and carer viewpoint of COPD quality standards

Can be used to measure patient experience of quality and value COPD interventions

Simple, patient held document that provides key self-care interventions and links to
British Lung Foundation helpline for on-going support

Empowers patients to drive best practice in COPD
Learning points:
• Listening to patients and carers experience and feelings about the care they received led to
the creation of the COPD patient passport
• Pooling the knowledge and experience of clinicians and patients means the passport is
evidence based and mapped to quality standards
• Access to self-management action plans and pulmonary rehabilitation – the most important
self-care interventions – needs to improve.
• Working with a patient organisation led to:
•rapid feedback on the seven steps
•relevance and acceptability to a wider patient group
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•ability to measure adherence to quality standards
•access to patient helpline
Survey:
Audit of adherence to the seven steps is continuing and will provide localities with relevant
data to inform service development/ improvement. We have now conducted a pilot survey of
patients to find out how frequently the 7 steps were met.
The BLF on-line community has 2129 members, 306 (15%) completed the survey, results are
summarised in the table.
Positive
%
response
Step 1 (QA diagnosis/spirometry)
275
90
Step 2 (support in self-management)
140
46
Step 3 (help with smoking cessation)
101
33
Step 4 (referral for pulmonary rehabilitation)
151
49
Step 5 (understand medication & inhaler technique)
244
80
Step 6 (rescue medication)
95
31
Step 7 (regular review)
204
67
None of the above
17
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Results show a variation in the offer of basic standards of care to COPD patients completing
this survey, demonstrating significant room for improvement. It is not clear whether
responders were commenting on primary or secondary care providers
The high number of responses in a relatively short time suggests that patient websites offer
useful opportunities for patient engagement. However, responders may be a self-selecting
group and may not therefore be representative of the wider COPD population.
Next Steps:
We propose wider use of the 7 Steps Patient Passport and a more extensive survey as a way of
improving standards of care, driven by patient demand as well as by more comprehensive
guidelines.
We are promoting the passport alongside BLF nationally.
For more information: write to Preeti.sud@northwest.nhs.uk
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1. Appendix 1:
The British Lung Foundation support people and their families who have or have been
affected by lung disease. One in seven people in the UK are affected by a lung disease. The
British Lung Foundation is the only UK charity dedicated to supporting all people with lung
disease. The British Lung Foundation are proud of the services it offers, from the Breathe Easy
support groups across the home nations to the telephone Helpline, BLF nurses, PenPals
scheme and interactive web forums. The British Lung Foundation aim to create a network of
patient leads to harness the patient voice across the North West to achieve improved care for
people with respiratory disease
The NHS NW Respiratory Clinical Pathway Team (NWRCPT) was set up in April 2010. The
team is responsible for implementing the National Chronic Obstructive Pulmonary Disease
(COPD) strategy in the North West. The team works on the model of engaging change
champions within each health economy. Integrated teams are engaged through various
networking events and clinical best practice days. Other stakeholders are also involved in the
work being done by the team through representation on the Regional Board, Asthma steering
group and expert panels for Home Oxygen Services, Medicines Management, Kite Marking of
COPD and Asthma services etc. Communities of practice are being set up to implement the
work at local levels.
NHS North West established ‘Inspiration NW’ in 2008 as part of the Service Experience
Directorate. It is a dedicated programme within the directorate which has worked with some
60 Trusts and received national acclaim for raising the profile of experience as an important
dimension of quality and developing innovative bespoke packages of support which focus on: 
Building knowledge and insight

Strategy and planning

Living with values and behaviours everyday

Experience based designed services
National context
Reference: Quality, reforms and CCG authorization process. Supporting clinical decision
making. No decision about me without me
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Appendix 2:
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Appendix 3: (response from a NW COPD patient on the draft passport highlight NICE QS)
Walk the 7 steps to the best COPD care
I have COPD
1. My diagnosis has been confirmed by lung function test performed
by a qualified person.
Included in NICE quality standard 1.
2. I feel supported to manage my COPD. I am actively involved in my
care and have the opportunity to discuss how I wish to be treated.
NICE quality standard 2, except for the very important section I
have emphasized in bold regarding my opportunity to discuss how
I wish to be treated and to be listened to!
3. I have been offered help and support to stop smoking.
NICE quality standard 5.
4. I know the importance of keeping active and have been offered the
opportunity to improve my activity through exercise and pulmonary
rehabilitation if appropriate.
NICE quality standard 6.
5. I know how and when to take my medicines, and feel able to use
my inhalers and other medicines properly.
NICE quality standard 3.
6. I have a written action plan, rescue medication, and know when
and how to use them.
Included in NICE quality standard 7.
7. I see my doctor or nurse routinely at least once a year for review of
my lung function, medicines, inhaler technique, vaccinations,
breathlessness, activity and oxygen levels and to review my action
plan.
Included in NICE quality standard 4.
8. At my annual review I can request and receive a detailed, updated
prognosis.
(I am aware that not all patients would want this, so it should be
subject to request rather than routinely offered.)
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Appendix 4: 10 key messages from September 2011 patient listening event
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