CANCER NHSImprovement · 2017-11-17 · NHSImprovement-Lung Zoë Lord, NationalImprovementLead, NHSImprovement-Lung PhilDuncan, Director, NHSImprovement-Lung PhilDuncan Director,

Improving earlier diagnosis andthe long term management ofCOPD: Testing the case forchange

NHS Improvement - Lung: NationalImprovement Projects

NHSNHS Improvement

Lung

HEART

LUNG

CANCER

DIAGNOSTICS

STROKE

Introduction

Case studies

Hinchingbrooke Health Care NHS TrustThe introduction of direct access pulmonary function testing to support primarycare in accurately diagnosing and managing respiratory patients, while reducingwaiting times for clinic appointments and reducing costs

North East, North Central London and Essex Health Innovation and EducationCluster working with Walthamstow West Primary Care Commissioning GroupValidating registers and reviewing patients to ensure an accurate diagnosis ofchronic obstructive pulmonary disease (COPD) and understand the region oferror on GP disease registers and the variation between practices

Imperial College Healthcare NHS Trust and Central LondonCommunity Healthcare NHS TrustAn integrated respiratory team can make significant improvementsacross the entire COPD patient pathway

London Community Healthcare NHS Trust and Hammersmithand Fulham Primary Care TrustUsing an innovative data warehouse developmentto improve respiratory services

The Leeds Teaching Hospitals NHS TrustDeveloping an integrated COPD disease register to support qualityassured diagnosis and proactive chronic disease management

Leicester County and Rutland PCTHow good is our management of chronic obstructive pulmonary disease?

The Victoria Practice, Aldershot, HampshireReducing waste and increasing adherence in use of medicines for chronicobstructive pulmonary disease

NHS BlackpoolFormalising self management planning in Blackpool

Veor Surgery, Camborne, CornwallA systematic approach to implementing self management action plans

Breathe Easy North Staffordshire and NHS Stoke on TrentHow support groups can impact on patients’ ability to self manage

Acknowledgments

References

Contents

NHS Improvement - Lung National Improvement Projects -Improving earlier diagnosis and the long term managementof COPD: Testing the case for change

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3Contents

Introduction4

Introduction

Case for change: the current positionfor chronic obstructive pulmonarydisease in the UK

There are around 835,000 peoplecurrently diagnosed with ChronicObstructive Pulmonary Disease (COPD)in England and an estimated 2,000,000people with COPD who remainundiagnosed and are living with thedisease1. The majority of these have mildor moderate disease but if they werediagnosed early, they could then take thenecessary steps to improve the outcomeof their disease and modify itsprogression. The disease is progressiveand cannot be cured, with one persondying every 20 minutes in England andWales. However, timely and accuratediagnosis, with supportive ongoingmanagement can help modify the impactof the disease, helping people to self-manage more effectively and therebyreducing the need for hospital admission.It is therefore vital that patients receive aquality-assured diagnosis at the earliestopportunity in order to commenceappropriate treatment and to slow theprogression of the disease for theindividual. This can also reduce theimpact on carers and on the burden oflong term management and its relatedcosts.

The Outcomes Strategy for COPDi andAsthma in England and the NCROP Auditii

identified that there is significant variationacross England in the way in whichpeople are referred, diagnosed andtreated. There is significant scope toimprove the quality and timeliness ofdiagnosis, treatment and management,including pharmacotherapy, and toorganise care in a more integrated way.This would not only improve the qualityand efficiency of the service, but alsoempower patients to manage their owncondition.

A reduction in this variation would alsoincrease value for money of services aswell as improving outcomes for peoplewith COPD in line with the Quality,Innovation, Productivity and Preventionagenda.

During the first year of project work, NHSImprovement – Lung through the ‘EarlierDiagnosis’ and ‘Managing COPD as aLong Term Condition’ nationalworkstreams have focussed ondeveloping services that deliver efficientand high quality care and support forpatients suspected to have COPD or livingwith the disease. This has been achievedthrough working with and supportingclinical teams to identify, test andimplement the changes needed toachieve this level of care and understandthe key components that have thegreatest impact on the pathway andbenefit to patients.

The aim of the earlier diagnosisworkstream was to ensure that all peoplewith suspected COPD receive an accurateand quality assured diagnosis sooner andas a result, are placed on the correcttreatment pathway. The aim also includedensuring that patients receive appropriateinformation about their condition and areadded to the practice disease register.With the right pathway in place, it washypothesised that timely and qualityassured diagnosis would lead to areduction in service costs by optimisingthe treatment pathway for patients andinitiating self-management at an earlierstage in the disease progression. Projectwork included testing service models inboth primary and secondary care,understanding and reviewing registersand the development of tools to improveand monitor quality.

The aim of the managing COPD as a longterm condition workstream was toexplore how supported self-care andregular review can best be delivered inorder to improve the outcomes andquality of care offered to patients. Theaim also included related work to test theoptimisation of health resources towardsa reduction in emergency admissions. Animportant component of the workincorporated medicines management byensuring all patients with COPD were onthe correct treatment in relation to theseverity and symptoms of their disease,and were regularly reviewed to helpsupport them to use their medicationcorrectly. Project work included testingways to develop and implement effectiveself-care models and ongoing patientreview, and to identify the key challengesand solutions for overall long termcondition management.

This publication, which is aimed athealthcare professionals, commissionersand other key stakeholders involved inrespiratory health, draws together theevidence and learning from the past 12months and highlights the workundertaken by the project sites withinboth national workstreams.

Improvement approach

In July 2010, NHS Improvement - Lunginvited NHS organisations to work inpartnership on projects dedicated toimproving the COPD patient pathway andto help address the variation in care thatpatients receive. Projects plans weresubmitted from a number of sitesincluding acute trusts, primary care trusts(PCTs) and community organisations.

5Introduction

The primary aims of the projects in thetwo national workstreams were to:

• Define the patient’s pathway• Identify and reduce variation in thedelivery of care

• Challenge the system and test thecomponents of care that lead toconsistent and effective diagnosis andmanagement of the condition

• Identify the success principles thatother organisations and teams couldlearn from and adopt

• Distil the learning to inform future‘prototyping’ work.

Focus was also given to improving thepatient’s experience and outcomes alongwith removing duplication and wastefrom the pathway or specific processesthrough different ways of working andservice redesign. Productivity gainsachieved by sites were measured toidentify the impact of the work.

During the ‘testing’ phase of theprogramme, project teams have exploredthe reality of making this happen bytaking stock of current practice andunderstanding the process ofimplementation to ensure patients receiveoptimal care in a challengingenvironment. The project sites adopted asystematic approach to qualityimprovement to ensure that any changesimplemented were thoroughly tested andmeasured. Prior to commencing thework, the project sites were required toestablish their service baseline throughanalysis of local data and to understandthe variation in services.

Once the project teams were established,a period of analysis followed to allowteams to understand the patient pathway.This also helped dispel any assumptionsabout the process, its challenges and thesolutions. Potential solutions were testedusing the model for improvement andplan-do-study-act (PDSA) cycles withongoing measurement to evaluate theimpact of the interventions and refinewhere appropriate.

Common challenges and solutionsClinical teams at all sites have beenfocussed on specific aims which haveincluded:

• Identifying the current state of practiceand any gaps, duplication, waste oropportunities to improve the quality ofcare

• Increasing the number of patientswhose treatment is optimised byidentifying the right patients, providingappropriate information and support,and ensuring they are on the righttreatment path

• Identifying ways to ensure that theirsystems for diagnosis and managementare consistent and effective.

Whilst each project site has worked on adifferent part of the diagnosis andmanagement pathway, a number ofthemes have emerged across all sites:

• Although clinicians understand thecomponents of optimal COPD care,there is widespread variation in practicein the way in which diagnosis andmanagement are provided. Thisincludes aspects such as spirometry,support for self care and optimisingtreatment

• There appears to be extensive variationin the quality of spirometry beingundertaken and interpreted, along withthe quality of information beingcollected. This includes the accuracy ofCOPD registers.

• Taking time to understand what ishappening in the current system andidentifying who is doing what maymean that change can occur morequickly, safely and reliably without theneed for additional resources

• Significant variation across primary caremay not be immediately apparent.Identifying low prevalence, highadmission rates and prescribingperformance can help target efforts forimprovement

• Consistent recording of data across thepractice team is essential to allowstratification, monitoring ofdeterioration and impact of changes incare, and highlights any increasingfrequency of exacerbations early inorder to initiate targeted interventionwhere appropriate

• Data is essential for improvement.There is plenty of it available but it isimportant to identify what is mostuseful and how best to present it.Targeting patients or practices withhigh resource use can help towardsdemonstrating benefits more quickly

• There can be a significant impact onadmissions by targeting moderateCOPD patients and increasing theirconfidence in self management, whileensuring work is undertaken tocorrectly identified patients’ severity inthe first instance

Introduction6

• Where there are no formal systems inplace for risk stratification, it is stillpossible to start the improvementprocess by exploring which patientsaccount for the greatest use ofresources – for example, appointments,accident and emergency attendances,admissions or medicines. Using thePareto principle – the principle that20% of people or problems mayaccount for 80% of resources – canhelp target effort more effectively

• It is important to work together toimprove the management of COPD byboth gaining common agreement withstakeholders, and developingintegrated and consistent approachesto patient pathway management

• Good management and self-caresupport requires 30–60 minutes and apatient-led approach. Patients withmore than one long term condition(LTC) may benefit from a holisticassessment and review, which may alsoreduce total demand for healthcareresources over any twelve monthperiod. Shorter appointments maymean there is little time to listen to thepatient and establish their needs andmay lead to repeat appointments

• Inhaler technique is a key area forimprovement in the management ofCOPD. Many patients do not maintainthe correct technique and many staffmay not be demonstrating correctly.There is evidence of the costeffectiveness of using trainer devices toimprove technique, and regularchecking can ensure patients receivethe maximum benefit from theirmedication

Project Outcomes: EmergingSuccess Principles from ProjectLearning

Through problem solving and asystematic approach toimprovement, all teams workedthrough a number of challenges inorder to achieve their project aims.Across the sites, a number of successprinciples have been identified thatrepresents improvementopportunities towards effectiveservice provision in the diagnosis andmanagement of COPD:

• Defining and gaining a goodunderstanding of the wholepathway of care supported byrobust data to demonstratecurrent processes, performanceand variation is essential whenembarking on improvement work.This allowed organisations toidentify priorities for change andalso to benchmark themselveswith others locally and nationally

• Issues and challenges viewed inisolation without dueconsideration to the whole patientpathway were less likely to lead tosustainable improvements in careprovision

• Effective working relied on thecommitment of teams in primary,secondary and community care toimprove communication across thepatient pathway. Integratedworking helped to build positiverelationships with health careprofessionals, departments andorganisations, and improve thecritical interface between theseorganisations

• People are motivated by differentthings. Taking time to find out whatwill motivate someone to changebehaviour will lead to an increasedchance of helping them

• Teams may have concerns about thepracticalities of offering longerappointments, including the impact ofpatients not attending. Group sessionsfor review or patient education canlimit the impact on resources and mayenhance the patient experience

• Taking time with patients to explorehow the care they receive affects theirhealth or their ability to self-manage,using a tool such as the COPDAssessment Test (CAT) or similar, canlead to improved outcomes and overallexperience

• Providing patients with information,advice and contact names and numberscan result in improved managementalong with earlier recognition of andaction on symptoms, thereby reducingthe need for emergency care andadmission

• Providers should systematically addressthe way they work to find consistentand sustainable pathways that deliverproactive and holistic care.

7Introduction

• Access to and effective use of datathrough collaboration betweenclinical and managerial staffenabled the project teams tobetter understand the patientpathway and demonstrate theimpact of any change. The routinecollection and review of data wasimportant in implementingsustainable improvements andunderstanding outcomes of anyservice improvements

• Identifying the key levers anddrivers in the system by integratinglocal and national priorities intothe work such as Quality,Innovation, Productivity andPrevention (QIPP) raised the profileand priority of the project workwith decision makers and helpedto achieve improved engagementfrom senior management teams

• There was a need to identify andunderstand the gaps, duplicationand waste in the patient pathwayin order to make best use ofavailable resources. It was essentialto work and communicate withcolleagues, commissioners andother stakeholders in serviceprovision in order to maximisethese resources and to ensure aconsistent and co-ordinatedapproach to care.

Many of the issues and challengesmet by the project teams weresimilar to those faced in otherspecialities and several of the successprinciples have been demonstratedto be effective in other disciplines. Itwas important for sites to recogniseareas where common principles andpractice meant that learning couldbe transferred across specialities.

• Service models that support diagnosisacross the whole pathway (for COPD,Asthma, Home Oxygen and SleepApnoea)

• Opportunities for diagnostic bundleapproaches

• Workforce skills and competencyrequirements.

Managing COPD as a long termcondition workstreamIt is known that patients who understandwhat to do in the event of anexacerbation are more confident to seekhelp earlier and can avoid admissions,while regular medication reviews andinhaler technique checks can help reducewaste in prescribing. It is alsoacknowledged that while it is critical tohave access to tools like plans, reviewsand templates to help patients managetheir condition, effective managementneeds to be underpinned by a set ofskills, an approach and an infrastructurethat will allow delivery. Thesecomponents can be considered as:

• The resources that patients need• What professionals need to do• The infrastructure that needs to be inplace to facilitate to delivery.

For patients to be effectively supported toself care and for professionals to deliverchronic disease management successfullyeach of these components needs to be inplace. The challenge now is to identifyhow best to implement this consistently,reliably and cost effectively. Further workis also required to identify the essentialelements and most effective means toput these into practice, including:

• Planning for early intervention in theevent of exacerbation

• Medicines management and goodinhaler technique

Future ‘prototyping’ work

In the forthcoming year of project worksites will be building on the learning fromthe ‘testing’ phase of work. Sites will berefining the components attributed to theemerging care models and successprinciples that demonstrated the greatestimpact on the patient pathway during thepast year. The prototyping work willdefine the chronic care model for patientswith COPD, representing an efficient andhigh quality care model that reflects notonly best practice, but also demonstratesexamples of practical approaches towardssustainable implementation. The evidenceand learning from the diagnosisworkstream will inform its scoping workprior to commencing the prototypingphase.

Earlier diagnosis workstreamUsing national data currently available,a national scoping exercise will beundertaken to determine the currentdiagnostic pathways for patients withsuspected COPD. This will also define theoptimum pathway and identify bestpractice case study examples. Followinganalysis, service gaps between the‘current’ state and ‘future’ statepathways, common themes andprinciples, challenges and potentialsolutions will be pulled together in orderto inform future priorities forimprovement and prototype work.

In summary, the key aims of the scopingwork will be to identify:

• Sustainable and innovative servicemodels (including direct access tosecondary care, GP provision andsecondary care provision)

• Models to support earlier diagnosis andimproved primary care access

• Models to support diagnosis of allseverities and associated conditions

Introduction8

• Adequate time for regular review thatencompasses what is important to boththe clinician and the patient/carer andsupports self management

• Skills to deliver support, education andtreatment.

As a result the workstream will now focuson demonstrating how to improvemanagement and self care for peoplewith COPD to reduce admissions,optimise medicines use and enhancepatient experience by prototyping:

• The optimal time and components ofan effective review from both patientand clinician perspective

• Practical ways of implementing this anddelivering it within existing resources

• How to optimise medicines use and theimpact of doing so on cost, experienceand use of other health care resources

• The key components that need to be inplace for patients to be able toeffectively self-manage and the benefitsof doing so.

This will allow the production of a modelthat demonstrates what needs to be inplace for care to be delivered effectivelyand how to implement it, to ensure thatevery minute of contact is used tomaximum effect, every time.

In summary, the key aims of prototypeproject sites will be to:

• Define the exemplar model of care• Demonstrate an integrated care modelto identify and manage acute episodes/exacerbation

• Demonstrate an approach to improvingother condition management

• Ensure a supportive self managementapproach to care that incorporates aregular structured review

• Ensure a medicines management andreview approach that optimisestreatment.

It is the aspiration of the nationalprogramme to deliver a QIPP reduction inemergency admissions by 20%, areduction in readmissions at 30 days by20% and reduction in prescription spendby 10% to which effective diagnosis andmanagement can contribute. In addition,the workstream will continue to identifythe key components of care that improvethe overall patients’ experience andoutcomes, and further develop thelearning and key success principles thatsupport effective commissioning ofrespiratory services in England.

Catherine Blackaby,National Improvement Lead,NHS Improvement - Lung

Zoë Lord,National Improvement Lead,NHS Improvement - Lung

Phil Duncan,Director,NHS Improvement - Lung

Phil DuncanDirector,NHS Improvement -Lung

Catherine BlackabyNational Improvement Lead,NHS Improvement – Lung

Zoë LordNational Improvement Lead,NHS Improvement – Lung

9Introduction

Project summaryHistorically, most patients referred to thesecondary care consultant-led respiratoryclinic via Choose and Book receiveddetailed pulmonary function testing priorto their appointment with the consultant.However, an audit highlighted that 30%of referrals did not require interventionand were immediately discharged back tothe GP as these patients could have beendiagnosed and managed in primary care(estimated saving of £10,000).

This led to the introduction of a directaccess service to provide full pulmonaryfunction testing for those GPs whorequired support diagnosing andmanaging their respiratory patients inprimary care.

The new service provided detailedpulmonary function testing (spirometry,static lung volumes, gas transfer +/-reversibility testing) for all referredpatients. Where there is diagnosticcertainty, the patients receive informationfrom the physiologist about the outcomeof their test and a British LungFoundation (BLF) leaflet; where thiscertainty does not exist, patients receivemore general information about lunghealth, based upon leaflets from the BLF.GPs receive fully interpreted PulmonaryFunction Tests, with chest physicianguidance as necessary. Depending on theoutcome of the tests, patients no longerautomatically see the consultantrespiratory physician, although advicemay be given to refer the patient in to therespiratory clinic where deemedappropriate.

Project aim• Improve the accuracy of diagnosis,especially chronic obstructivepulmonary disease (COPD), in primarycare

• Ensure all patients are on theappropriate management pathwayswith appropriately identified patientsbeing managed in primary care,resulting in:• Earlier access to smoking cessation• Improved access to COPD respiratorynurse specialists

• Earlier access to pulmonaryrehabilitation services

• Appropriate referrals into the hospitalrespiratory clinics for specialist guidance(a reduction in unnecessary referrals forpatients who can be managed inprimary care)

• To create a measurable effect on GPs’decision to refer a patient to hospitalclinics with the aim to reduce referralsby 25%.

Highlights and achievementsReduction in unnecessary consultantappointments by 78% for those patientsreferred in to the service:• Saving of £144 per patient who doesnot require a consultant appointment

• Reduction in waiting times – from eightweeks to one week

• 32% of patients have had theirdiagnosis changed following detailedPulmonary Function Tests:

• 15% classified as restrictive by GPwere normal

• 15% classified as obstructive by GPwere normal

• 69% classified as normal by the P wereobstructive

• 54% of patients referred needed to beadded to the practice COPD diseaseregister and 7% needed to be removedto the register

• Out of the total GP referrals whichwere classified as obstructive, 32% ofpatients had their Global Initiative forChronic Obstructive Lung Disease(GOLD) disease severity changed:

• 43% maintained their severity asclassified by GP spirometry

• 20% changed by one GOLD stage• 38% changed by two GOLD stages.

Learning• Meaningful patient engagementpresents valuable insights into a currentservice provision. Patient engagementwas highly beneficial resulting in adirect impact on the project:improvements included the way inwhich the patient invitation letters arestructured and written along with theinformation leaflets that are given outto patients at the time of their tests

• GP engagement can be challenging.Use data to target high volumereferrers. Only providing writteninformation about a new service doesnot instigate a change in referralpatterns. Newsletters, emails and lettershave a limited effect. Buildingrelationships and using personalmediums of communication likeface-to-face meetings can have apositive effect.

ContactDr Robert ButteryConsultant Respiratory Physician,Papworth Hospital andHinchingbrooke HospitalEmail: [email protected]

The introduction of direct access pulmonary functiontesting to support primary care in accurately diagnosingand managing respiratory patients, while reducingwaiting times for clinic appointments and reducing costs

Hinchingbrooke Health Care NHS Trust

Dr Robert Buttery, Lorraine Leech, Kelly Backler(Hinchingbrooke Hospital), Dr David Roberts (GP)

10 Case studies

Project summaryNorth East, North Central London andEssex Health Innovation and EducationCluster (NECLES HIEC) have been workingwith nine practices in Walthamstow WestPrimary Care Commissioning Group withsupport from GlaxoSmithKline UK toquantify the region of error in thediagnosis of COPD and the recording ofinformation on disease registers.

Project aim• Quantify the region of error indiagnosis of COPD, by understandingthe proportion of patients with anincorrect diagnosis (following NationalInstitute for Health and ClinicalExcellence (NICE) 2010 guidelines forconfirming COPD diagnosis)

• Quantify the variation betweenpractices

• Establish a comprehensive and accuratedisease registers that capture allelements of the diagnostic and severityassessment, enabling healthcareprofessionals to take a proactiveapproach to the identification andmanagement of people with COPD, inline with the NICE COPD guideline2010

• Reduction in waste, improvedproductivity and quality of servicesprovided locally, by reducinginappropriate administration ofmedicines

• Prevent inappropriate treatment due toinaccurate diagnosis or incorrectassessment of severity.

Highlights and achievements• A baseline from the practices wasextracted using GSK POINTS tool alongwith a list of COPD patients on eachdisease register

• Any patient without a recordedspirometry result or with an FEV1/Ratiorecorded >0.7 was invited for a reviewwith the respiratory nurse specialist –using NICE COPD 2010 guidelines. Thereview was based on and included afull patient history and spirometry withreversibility testing

• Following a clinical review, the practiceregisters were updated and the GPinformed. If any medication changeswere necessary, the patient notes werealso updated along with dialogue withthe GP

• Up to 36% of records on the registershad no documented spirometry whichwould suggest that spirometry has notbeen performed or the result had notbeen documented on the register

• Between 3% and 100% of records inthe nine surgeries had incompletespirometry results which could indicatethat these patients have not had avalidated diagnosis and that there is thepossibility that these patients are notbeing treated effectively

• 18% to 100% of records in the ninepractices did not document ‘percentageof predicted FEV1’ to assess severity ofthe disease and monitor diseaseprogression over time

• Between 21% and 47% of records hada ‘FEV1/FVC ratio ≥ 0.7’ which couldindicate that the patient does not sufferfrom COPD and there is an issue withpoor technique or interpretation ofspirometry results

Validating registers and reviewing patients to ensure anaccurate diagnosis of chronic obstructive pulmonarydisease (COPD) and understand the region of error onGP disease registers and the variation between practices

North East, North Central London and Essex Health Innovation andEducation Cluster working with Walthamstow West Primary CareCommissioning Group

Quality of COPD diagnosis measures at practice level

Practice 1 Practice 2 Practice 3 Practice 4 Practice 5

Practice 6 Practice 7 Practice 8 Practice 9

11Case studies

• Four out of the nine practices had 60%or more patients with a dual diagnosisof asthma

• Evidence from the practices confirmedthat patients on both COPD andAsthma registers receive two reviewswhich is costly to the health service andconfusing to patients

• Results following a review with therespiratory nurse specialist to confirmdiagnosis highlighted 50% of patientshad a confirmed diagnosis of COPDand 50% did not have COPD.

Learning• A standardised register whichincorporates the requirements forQuality Outcomes Framework (QOF)and NICE diagnosis and management isrequired to drive up quality

• Variation occurs in the patientinformation collected on the practicetemplates. This occurrence is due todifferent software companies (EMIS,VISION etc) and variations within eachversion of the software

• Education and training for practice staffis imperative to the quality of COPDdiagnosis and the recording ofinformation. Both individual and groupeducation and training session arerequired ensure all new diagnoses arequality assured and the correctinformation is added to the COPDregister

• A standardised register would assist learning for healthcare professional whoare new to COPD

• Collecting data is time consuming butimportant to understand the currentreality and the variation in clinicalpractice so that action can be taken toimprove quality and patient care.

ContactDr Gabby IvbijaroGP Waltham ForestEmail: [email protected]

Professor Mike RobertsHIEC FacilitatorEmail: [email protected]

Anne O'MalleyRespiratory Nurse Specialist

Kirsty BarnesHIEC FellowEmail: [email protected]

12 Case studies

Project summaryA consultant led integrated respiratoryteam in Hammersmith and Fulham (H&F),working across Imperial CollegeHealthcare NHS Trust (ICHT) and CentralLondon Community Healthcare NHS Trust(CLCH) has been working to improve thequality of services for patients with COPDand other long term respiratoryconditions.

The project was part of a broader reviewto reconfigure and re-commission servicesto deliver an integrated COPD patientpathway, supported by the primary caretrust and local stakeholders. The projectwas commenced after a gap analysisshowed that H&F had among the worstoutcomes for COPD patients in London,with high admissions costing over £1mper year and an estimated 5,000 patientswith as yet undiagnosed COPD.

Service developments have includedspecialist support to primary caredelivering quality assured spirometry,workplace based training and qualityreviews; community based pulmonaryrehabilitation; a COPD discharge bundlewith community follow-up; andcommunity clinics.

Project aim• To review practice disease registers andsupport primary care clinicians toconfidently diagnose and managerespiratory patients

• Ensure all reviews include qualityassured spirometry to confirmdiagnosis, with an assessment ofdisease severity, and patients receivewritten information about theirdiagnosis

• To support patients to self manage• To facilitate NICE standardpharmacological and nonpharmacological management of COPDand asthma

• To support patients post discharge afteracute exacerbation

• To improve communication and jointworking by clinicians looking afterCOPD patients in primary, secondaryand community teams.

Highlights and achievements• Improvements across the patientpathway have led to a reduction ofadmissions by 19% and readmissionsby 66%

• Reduction in first and follow upoutpatient appointments equating toapproximately £170k savings

• Reduction in the proportion of patientspresenting with an acute exacerbationof COPD who do not have a previousGP diagnosis

• 145 patients have had a quality reviewwith a respiratory specialist as a resultof which:• Quality of recording of FEV1,exacerbations and breathlessnesshave improved in line with NationalInstitute for Health and ClinicalExcellence (NICE) quality standards ina practice audit exercise

• 30% additional referrals tosmoking cessation advice were made

• 41% of patients received rescuemedication packs

• 23% of patients were referred topulmonary rehabilitation

• 44% of patients underwentchanges to prescribedpharmacotherapy

• 5% of patients had their diagnosischanged from Asthma to COPD.

• A real time ‘COPD Report’ tool hasbeen developed in liaison with PublicHealth to capture patient and practicelevel data on COPD care and outcomesand to monitor progress of thepathway.

Learning• Shared aims and joint working acrossprimary, secondary and communitycare, with engagement ofcommissioners is critical to the successof an integrated service

• Changing traditional patterns ofworking is challenging and takes timeto implement

• Data is crucially important; robusttimely data is difficult to obtain andclinicians need to take ownership andresponsibility for it

• Managing change can be slow anddifficult. Communicationthroughout the process is vital

• Implementation of the chronic caremodel in COPD pathway can deliverimproved outcomes. Working acrosstraditional boundaries to deliver anintegrated pathway is one way toachieve these outcomes and delivervalue for money.

ContactDr Irem PatelConsultant Respiratory Physician,Integrated CareEmail: [email protected]

An integrated respiratory team can make significantimprovements across the entire COPD patient pathway

Imperial College Healthcare NHS Trust and Central LondonCommunity Healthcare NHS Trust

13Case studies

Example of the GP practice reports and progress made

Number of admissions by patients who are on and not on the GP COPD disease register

Patient on GP condition register

Patient not on GP condition register

PRACTICE A

PRACTICE B

PRACTICE C

14 Case studies

Project summaryIn all quality improvement projects, accessto data is a crucial part of identifying theareas for improvement and formonitoring progress.

An integrated respiratory team inHammersmith and Fulham workingacross Imperial College Healthcare NHSTrust and Central London CommunityHealthcare NHS Trust started theirimprovement project by working withlocal GP practices. Using theGlaxoSmithKline POINTS (GSK) audit toolto assess the quality of chronicobstructive pulmonary disease (COPD)management in their area, a respiratoryspecialist team worked with practices toreview COPD and asthma patients todeliver workplace based training aimed atprimary care clinicians. Data fromenhanced COPD and asthma reviews wasentered on read code linked templatesand progress was followed up with asecond audit.

Significant improvements were made toreduce the variation between practicesand improve the quality of diagnosis andmanagement. To sustain theimprovement in the area, a multidisciplinary team from Central LondonCommunity Healthcare NHS Trust,Hammersmith and Fulham Primary CareTrust (PCT) and General Practice initiateda project to build a near a real-time audittool.

The tool can baseline and monitorinformation recorded on practicecomputer systems, monitor out patientappointments, admissions and re-admissions, along with highlighting thoseadmissions coded as COPD or asthmawho are not on the GP practice diseaseregister. This then generates a local

‘COPD’ or ‘asthma’ report at patient,practice or Primary Care Trust (PCT) levelas required which also can trackimprovements over time. A keycomponent of this is measuringcompliance with locally agreed andNational Institute for Health and ClinicalExcellence (NICE) standard care, ratherthan Quality Outcomes Framework (QOF)targets, and focusing on important datasuch as smoking prevalence in therespiratory population.

Project aim• Improve joint working across primary,secondary and community care todeliver and monitor an integratedpathway

• Improve the collection and analysis ofprimary and secondary care data tosupport local services and the decisionmaking processes

• Improve monitoring of the localintegrated COPD pathway, throughmonthly monitoring across primarycare and secondary care

• Improve local monitoring of asthmapatients

• Provide greater feedback on admissionsdata to local GP practices

• Create useful performance measures tosupport clinicians and managers in thearea.

Data extraction and matching processA multidisciplinary team made up of anintegrated care consultant, primary andcommunity clinicians, public healthspecialists and commissioners built thewarehouse based on primary andsecondary care read codes relevant toCOPD and asthma. The 30 practices inNHS Hammersmith and Fulham agreed toshare a generic monthly extract of datafrom their practice systems to the PCT.

• Data is automatically extracted from GPpractices and aggregated by ApolloSoftware

• The data is then downloaded fromApollo and linked into the PCT datawarehouse

• The data warehouse combinesindividual patient level data fromSecondary Uses Service (SUS), the localRIO database and the extract fromprimary care, matching patients on NHSnumber

• An innovative, interactive document isproduced for viewing and sharing thedata, using Tableau software. Tableausoftware provides an intuitivedashboard style interface that enablespractices to have an overview of thekey measures for their practice, andclick into the detail for patient levelinformation if they require

• This data is shared with practices andthe integrated respiratory team tofacilitate appropriate intervention andmonitor progress.

Highlights and achievements• This innovative approach enables thePCT to access and merge the data fromthe local acute services and generalpractices to provide a whole systempicture of the care received by COPDand asthma patients in the area

• Data is collected on compliance withlocally agreed and NICE standards ofcare as opposed to QOF targets (e.g.stop smoking support, pulmonaryrehabilitation referrals etc)

• The architecture of the data warehouseis owned by the PCT and is available forother healthcare providers to use andimplement in their local area. Noadditional software is required as thewarehouse is based on the commonlyused Microsoft SQL database

Using an innovative data warehouse developmentto improve respiratory services

London Community Healthcare NHS Trust andHammersmith and Fulham Primary Care Trust

15Case studies

• The database structure and definitionsof the read code extractions areavailable to share with other PCTs orclinical commissioning groups

• The extracts from Apollo software areautomated for the practices and thePCT. No further user input is requiredonce the extract is set up

• Matching the data from GP practices tosecondary care allows for some usefulmeasures to be calculated. Forexample, each month the PCT reviewsthe COPD and asthma patients whohave had an admission for theirrespiratory condition who do not havea diagnosis in Primary Care and are noton the practice disease register

• The practice list data is refreshedmonthly, compared to the previousannual QOF practice list which thepractice received

• Practices receive admissions and re-admissions data on a monthly basis

• The data is obtained from the practiceseach month providing a timely updateon performance unlike annual datasources such as QOF

• The tableau interface provides atailored approach depending on theaudience’s requirements; it can outputto a pdf or word document, or usingthe tableau browser interface. Thisenables practices to drill-down to theindividual patient level data

• Transferability – current work haspiloted reports for COPD and asthma.The same data warehouse could beused for other disease areas.

Learning• There is a cost associated withextracting data using Apollo, which islow when considered on a per extractbasis, but may limit implementation inlarger PCTs over longer periods

• The reports are dependent on thequality of coded data. The dataextracted is very useful, but data codingissues can sometimes reportunexpected results, which require localinvestigation

• Risk stratification has been difficultfrom the initial extracts due to anincorrect level of read code data, butthere are plans to fix this in futureextracts.

ContactDavid SayersPublic Health Intelligence AnalystEmail: [email protected]

Dr Irem PatelConsultant Respiratory Physician,Integrated CareEmail: [email protected]

Alide PetriConsultant in Public Health MedicineEmail: [email protected]

Dr Clare GraleyGeneral PractitionerEmail: [email protected]

Case studies16

Example of COPD and asthma reports produced for GP practices

Case studies 17

18 Case studies

Project summaryThe Leeds Teaching Hospitals NHS Trustdeveloped a standardised ChronicObstructive Pulmonary Disease (COPD)register designed to proactively supportdiagnosis and chronic diseasemanagement across both Primary andSecondary Care.

Project aimTo produce an integrated standardisedregister to ensure all the necessary patientinformation is collected and recorded inone system. Thus improving thecommunication and information flowbetween Primary and Secondary Carewhich is highly beneficial for both patientoutcomes and efficiency, and to act as aplatform where diagnostic information(e.g. current smoking status) triggerspatient referral for treatment (e.g.smoking cessation).

Highlights and achievements• Development of an integrated register• A decision making pathway has beendeveloped to sit alongside the registerand support a care planningconsultation

• Fully implemented register in LeedsTeaching hospitals with work ongoingto convert the register into anelectronic format for primary care.

Benefits of using this disease registerinclude:• Standardised register for both primaryand secondary care

• Standardised collection of data• Mechanism for improvedcommunication between primary andsecondary care

• Improved the information flowbetween primary and secondary care

• Supports the assessment of severityof disease

• Enables assessment of the impact ofthe disease on the patient

• Facilitates assessment of diseaseprogression over time to identify theindications for all interventions with theimpact on the patient and their chronicdisease

• Consistent with the current clinicalevidence and the recommendations ofthe national and internationalguidelines

• Data format will be compatible withthe different information technologysystems used in NHS

• The process of collecting, recording andanalysing the data will be acceptableand feasible for both patients andhealth care organisations

• Support continuous audit of allrequirements of Quality and OutcomesFramework (QOF), Quality Standardsfor COPD and National Institute forHealth and Clinical Excellence (NICE)standard CG101.

Learning• The consultation with patients wasinvaluable to understand theirexperiences, expectations and needs ofa COPD service

• Support from the primary carecomputer systems is of paramountimportance for the full implementationof the integrated register. The processof engagement and decision making isslow and requires perseverance

• A barrier to the implementation of adisease register is the lack of widelyaccepted and robust standards formanagement of patients with COPD.QOF has limited clinical value, however,this disease register can facilitate theestablishment of such standards.

ContactTo receive a copy of the register,supplementary documentation or torequest to use the register in your areacontact:

Dr Doychin DimovConsultant Physician inRespiratory MedicineEmail: [email protected]

Further information including the registeris also available on the following website:www.improvement.nhs.uk/lung

Developing an integrated COPD disease register tosupport quality assured diagnosis and proactivechronic disease management

The Leeds Teaching Hospitals NHS Trust

19Case studies

The Disease Register for COPD is developed in the department of Respiratory Medicine at Leeds Teaching Hospitals NHS TrustCorrespondence: Dr Doytchin Dimov, Consultant Physician in Respiratory Medicine, St Jamesʼs University Hospital,BeckettStreet, Leeds LS9 7TF Tel: +44 113 2064523 Fax: +44 113 2064158 E-mail: [email protected]

Patient’s goals: (enter in patient’s own words)

Summary of thre consultation:

Disease Register for COPD - Leeds Teaching Hospitals NHS Trust

More documents are available on the NHS Improvement at: www.improvement.nhs.uk/lung

20 Case studies

Project summaryLeicester County and Rutland PrimaryCare Trust worked with Optimum PrimaryCare (OPC) using software to extractprimary care data. In order to targeteducation and intervention appropriatelyan evaluation was conducted todetermine how well asthma and chronicobstructive pulmonary disease (COPD)were being diagnosed and managed.Following the results of this evaluation itwas evident that a significant variation inquality and consistency existed, whichwas not routinely visible through thecurrent standard measures and reports.

Project aim• Develop an accurate baseline of currentperformance in primary care

• Provide practices with individualisedpatient reports on their system tosupport improved management

• Stratification of patients by diseaseseverity

• Identification of high risk patients• Assist in the planning of servicedevelopment

• Identify scope for targeted interventionto optimise therapy and reduceadmissions.

Highlights and achievementsOPC software was used to extractroutinely recorded data from participatingpractices. The data is automaticallycompared with the National Institute forHealth and Clinical Excellence (NICE)COPD rule sets to identify anydiscrepancies between current andsuggested optimal care for each patient.This is automatically fed back into thepractice system forming personalisedrecommendations for that patient; thisinformation will also inform the patient’snext review as well as creatingaggregated reports. Those patients with arecorded diagnosis of COPD ofapproximately 10% did not have COPDon spirometric criteria:

• Over 50% of patients had no FEV(Forced Expiratory Volume) or FVC(Forced Vital Capacity) values withintwo years of diagnosis. The cost oftherapy for misdiagnosed COPDpatients could amount to £86k pa –this represents a potential saving,depending on what their accuratediagnosis would be

• 30% of patients required optimisationof therapy, which could reduce thelikelihood of admission

• Approximately 7% of patients wereidentified as high risk patients usingthe DOSE index.

LearningExisting data sets and Quality OutcomesFramework measures give only a limitedunderstanding of quality. The markedvariation in recording of FEV1, COPDseverity, exacerbation recording, smokinghistory, medicines use, referral forpulmonary rehabilitation and otheraspects of care potentially indicatessignificant difference in quality of careand related impact on secondary care andprescribing. Making this visible helps totarget appropriate intervention toimprove management.

As patients with moderate or severedisease account for significant numbersof admissions, there is scope for improvedmanagement of these patients to haveconsiderable impact on acute activity.

ContactDermot RyanCOPD LeadLeicestershire County and Rutland PCT/Woodbrook Medical CentreEmail: [email protected]

How good is our management of chronicobstructive pulmonary disease?

Leicester County and Rutland PCT

The DOSE indexThe DOSE index (MRC Dyspnoea Scale, airflow obstruction, smoking status andexacerbation frequency) is a simple, validated tool for assessing the severity of COPDand guiding management, for use in routine clinical settings.

21Case studies

Project summaryVictoria practice employed a clinicalpharmacist to conduct reviews for asthmaand COPD patients that has reducedprescribing costs and improved patient'sCOPD assessment test (CAT) scores.

Project aim• Review asthma and COPD patients' useof medicines

• Identify opportunities to improvequality and reduce waste in prescribing

• Evaluate the cost effectiveness of aclinical pharmacist as part of theprimary care team.

Highlights and achievementsThe pharmacist sees COPD and asthmapatients routinely for review. Theseconsultations are specifically structuredaround previous National PrescribingCentre (NPC) concordance training, usingopen questions which help to understandthe patients' current attitude to theirmedicines and to set realistic goals forimprovement for the future.

During these consultations inhalertechnique is evaluated and an InCheckDial trainer device is also used in order todetermine that patients are achieving theoptimal inspiratory flow for their device.Patients using metered dose inhalers(MDIs) are also given a 2Tone Trainerdevice and advised to check theirinspiratory flow once a month at home.

The pharmacist is an independentprescriber, who holds COPD and clinicalpharmacy diplomas. This ensures thatthe pharmacist is able to review andrevise current medication, but working inthe practice she also has the opportunityto discuss any significant concerns withthe practice's lead GP.

Patients complete a CAT at their firstappointment with the pharmacist whichis then repeated at follow up where anintervention has been made in order tomeasure and document the effects andoutcomes. Patients who do not need aface to face follow up appointment arecontacted by phone two to three weeksafter their appointment. Where asignificant intervention such as change ofmedication was made during the courseof the project, 8 out of 10 patientsshowed reductions in CAT score ofbetween 5 and 17 points.

Reducing waste and increasing adherence in use ofmedicines for chronic obstructive pulmonary disease

The Victoria Practice, Aldershot, Hampshire

Change in consecutive CAT score by patient

35

30

25

20

15

10

5

01

CA

TSc

ore

2 3 4 5Patient

6 7 8 9 10

Original CAT Score Second CAT Score

CAT scoresThe COPD assessment test (CAT) isa simple validated test of 8questions that objectively measuresthe impact of COPD on the person’slife. A high score indicates thecondition is having greater impacton the person’s life; a low scoreindicates less impact. Patients areencouraged to complete itindependently, as the test allowsthem to express themselves in away that permits a commonunderstanding of the issuesaffecting them. Ongoing use andcomparison of consecutive scorescan reveal whether impact ischanging over time, providing auseful framework for discussion tohelp optimize treatment.

More information is available atwww.catestonline.co.uk/hcpbenefits.htm

Victoria Practice prescribing costs

The practice has demonstrated asustained reduction in prescribing costs of£1300 per month on respiratory chaptermedicines when other practices in itsgroup were showing an increase.

LearningAllowing 30 minute appointmentsprovides sufficient time with the patientso all aspects of the consultation can becovered. Making this time available forthe patient is important to establish arapport with the patient.To reduce ‘do not attends’ (DNAs) thereceptionists phones the patient the daybefore their appointment with areminder; this also allows time to contactother patients if there is a cancellation.

Looking at the total prescribing picturefor the patient can help identify waste.

Ensuring that repeat prescriptions fordifferent medications are synchronized interms of quantity prescribed can reduceover or under ordering. This alsoincreases the reliability of patients havingthe medication and taking it correctly.

Process mapping at the practice hasrevealed scope to work more closely withthe local pharmacies to reduce potentialwaste in repeat prescribing systems.

Enhancing the skill mix in the practiceteam has brought more generalknowledge and sharing into the practicesuch as an increased awareness ofmedication costs, benefits waste ofdifferent medication and additional coverwithin the team.

ContactClare WatsonClinical Pharmacist Victoria Practice,Medicines Management PharmacistNHS HampshireEmail: [email protected]

22 Case studies

Project summaryWith high prevalence of chronicobstructive pulmonary disease (COPD)within the region along with high rates ofsmoking, high mortality and highspending, improving care planning andpatients' ability to self manage were seenas priorities by the Primary Care Trust(PCT). At that time there was noformalised self management plan in uselocally so a format was developed inconjunction with patients. This initiative isnow in use across all 22 Primary Careteams and in the acute unit, with over1000 plans distributed by October 2011.

Project aim• Develop consistent written selfmanagement care plans for all patients,as a key component of an integratedCOPD pathway

• Develop patient education materialsand/or programmes together witheducational support for cliniciansadopting new ways of working

• Identify and promote the evidence basefor self management plans to gainclinical commitment for their use

• Agree an integrated approach toimplementation, including promotionof the plans and embedding their usein clinical and social care practice andother care settings

• Develop structured educationprogrammes appropriate to local needsand skilling healthcare professional todeliver the plan

• Evaluate the impact on patientconfidence and outcomes.

Highlights and achievementsA comprehensive plan was developed inconjunction with patients and adoptedacross primary and secondary care. Theplan was tested with clinicians andpatients to check terminology, contentand the process of delivery before rollingout, which both improved quality andincreased buy-in from clinicians.

Training and education sessions wereprovided to participating practices toensure that the plan was deliveredappropriately and consistently, tomaximise effectiveness.

Educational events and training sessionssupported the roll out of the plan whichembedded the ethos and methodologynecessary to deliver it successfully.Training included the whole team so thateveryone was aware of and engaged inthe process.

Plans were distributed to all GP practices,community matrons, case workers,pulmonary rehabilitation, acute trust,early supported discharge team and therelief nursing team. When a plan is issuedin secondary care, the named contact inthe patient's practice is informed tofacilitate seamless follow up. The planalso formed part of the Commissioningfor Quality and Innovation (CQUIN)payment framework with the acute trustto help embed its use as best practice.This helped reduce confusion for patientsby standardising the information theywere given and also helped assurecontinuity.

Training sessions were also run for socialcare workers to equip them withadditional skills to support patients intheir own homes by using My BreathingBook as an information tool. Communitypharmacists also have access to the planas a reference tool.

Formalising self managementplanning in Blackpool

NHS Blackpool

23Case studies

24 Case studies

The impact is being evaluated by apatient questionnaire, approved byClinical Governance and funded byPartnerships and Patient Engagementthrough local commissioners.

LearningStrong links and good personal workingrelationships help build bridges anddevelop a consistent approach to delivery.Clinical education is important to ensurethe plan is used properly and consistentlyand to promote both behavioural andcultural change. Pulmonary rehabilitationreferral rates improved withimplementation of the plan, withawareness of the educational componentand additional time staff can offerpatients.

A simplified version of a written selfmanagement plan is useful for thosepatients or carers who are less confidentor literate.

It can be difficult to evaluate or attributeimpact in the short term. Informationgovernance issues made it difficult totrack impact by NHS number as originallyplanned. Alternative process measuresmay help in the interim, or individual sitesmay be able to monitor their ownpatients, but it is important to getacknowledgement that impact on highlevel admission data will take longer towork through. Total resource use perpatient per year may be a better indicatorof integrated care that includes selfmanagement planning. Self managementplanning may be best seen as an integralcomponent of a care bundle approach todelivering holistic, best practice care.

It takes time!

ContactRos InceLead Nurse Respiratory NHS BlackpoolTel: 01253 651316Email: [email protected]

Project summaryTo ensure all chronic obstructivepulmonary disease (COPD) patients couldrecognise and respond appropriately toany worsening of their condition thepractice wanted to discuss a selfmanagement action plan with each ofthem before winter set in. In spite of asignificant rise in exacerbations, theproportion of reported exacerbationsresulting in admission was only 5% thatwinter compared to 8% the previousyear, and patients made greater use ofplanned appointments and telephonesupport to manage changes in theircondition.

Project aim• Ensure every COPD patient is reviewedand has discussed self managementaction for exacerbations in the run upto the winter period

• Issue antibiotics and steroids in linewith local guidelines to all appropriatepatients

• Evaluate the safety and impact ofissuing rescue medication to patients inrelation to untoward incidents,admissions and use of primary care.

Highlights and achievementsThe team reviewed existing resources andre-allocated time to set up 20 specificCOPD self management clinics, eachoffering six 30 minute appointments.122patients were reviewed for the project,and 100 patients agreed selfmanagement action plans during a threemonth period.

Receptionists contacted patients the daybefore their appointment with a reminderto reduce the chance of them notattending.

Consultations included discussing withthe patient general health and wellbeing(using a COPD computer template), whatto look out for when becoming unwell,prescribed medicines and their use,inhaler technique, spirometry check andrecording a COPD Assessment Test (CAT)score, sent to the patient for completionin advance.

Patients were encouraged to startantibiotics in line with local guidelinesand to contact the practice for advice andfollow up.

Exacerbations during the severe winterperiod were 117 (60 in previous year) butadmissions and GP appointmentsremained stable. Patients made more useof telephone consultations and plannednurse appointments rather than urgentcontacts, indicating early interventiongave better control and outcomes.

A systematic approach to implementingself management action plans

Veor Surgery, Camborne, Cornwall

Think ‘ABC’ to self-manageyour COPD

Able to do usual activities ?

Bit more breathless than usual ?

Coughing up colouredsputum or phlegm?

Don’t delay, start yourtablets today.

Proportion of exacerbations seen by GP or nurse

0.9

0.8

0.7

0.6

0.5

0.4

0.3

0.2

0.1

0October 2009 - March 2010

Perc

enta

ge

October 2010 - March 2011Year

Seen by doctor Seen by nurse

25Case studies

LearningInviting patients to discuss selfmanagement in August and Septembermeant there was less likelihood of illnessor bad weather affecting patients’ abilityto attend.

The professional conducting the reviewshould be able to prescribe antibioticsand steroids, and be confident toexamine and assess the patient, includingdistinguishing between exacerbation andheart failure. This helps avoid additionalreferrals back to the GP.

Allowing 30 minute appointments givesadequate time to address the patient’sconcerns and ensures their understandingwhen discussing self management.Setting up specific clinics to reach allpatients initially was time consuming, butdid not create the backlog of other workthat the nurses had expected. Once thesystem is established, new patients canbe booked in for appropriateappointments on diagnosis.

ContactAngie Bennetts,Advanced Nurse PractitionerEmail:[email protected]

Patient exacerbation pathway

26 Case studies

ExacerbationUrgent

appointment PrescriptionStart

medicationReview aftertwo weeks

Delay and stress when patient is unwell

BEFORE

Annual reviewwih plan Prescription Exacerbation

Startmedication

Review withnurse

practitioner

Prompt access to advice and treatment

NOW

Project summaryNHS Stoke on Trent and Breathe EasyNorth Staffordshire (BENS) demonstratedhow patient support groups can beintegrated into the patient pathway, witha 25% increase in attendance at the localgroup and 70% of members reportinggreater awareness of what to do whenthey become unwell. The area has highdeprivation along with high smoking andCOPD prevalence; increasing patients’understanding of how to manage theirown health is an important part of thelocal strategy to address this.

“…seeing the way othersufferers cope with theirillness has made me feelthat I can do the things Ipreviously felt I could not.”

Project aim• Analyse current membership of groupsand referral sources to identify gaps

• Increase the total number of patientsinvolved in the group andrepresentation from a wider group ofpractices by raising awareness andclarifying referral routes

• Develop effective patient and carerinformation to support selfmanagement

• Increase patients’ healthy behaviourand confidence to self manage byproviding appropriate messages,information and support

• Identify the impact that groupmembership has on patient outcomes.

Highlights and achievements• 75% of members say they are moreconfident and 90% have a betterunderstanding of their condition sincejoining the group

• A member of the local communityrespiratory team attends each meetingto answer questions and concerns, andto promote relevant self managementmessages. If any common themes areidentified this can then be addressed atan organisational level

• Enquiries and membership haveincreased, with a 25% increase inattendance at meetings, as a result ofmaking the referral process moreconsistent across a number of practicesand ensuring that Breathe Easy andBritish Lung Foundation (BLF) supportare highlighted at diagnosis

• Information packs on the local supportgroup and BLF are provided to practicesto give to patients on diagnosis andincrease the reliability of referral to thegroup. Information is also included indischarge information packs

• BENS members now provide input tothe local pulmonary rehabilitationprogramme, promoting the role of thelocal support group

• Representation from BLF at the localrespiratory implementation group hasenhanced understanding andawareness of what Breathe Easy andBLF can offer to enhance patientexperience and self management

• A quarterly newsletter and a welcomepack are provided to members.

• Group members completed aquestionnaire on the impact of thegroup on their confidence and selfmanagement (see box).

How support groups can impact onpatients’ ability to self manage

Breathe Easy North Staffordshire and NHS Stoke on Trent

27Case studies

Since joining Breathe Easy…

75% said they felt more confidentin managing their condition

88% indicated they felt morehopeful about the future

94% said they had a betterunderstanding of their lungcondition

70% felt they had moreknowledge of what to do if theybecome unwell

76% felt they had moreawareness of the supportavailable to people living with alung disease

28 Case studies

Learning• If health professionals are toconsistently promote membership of alocal support group, they need to beconvinced that the programme andadvice it offers are appropriate andvaluable. This can be achievedthrough engagement at both astrategic and operational level

• Personal contact with local practicescan help raise awareness of the supportavailable via the local group andincrease referrals to the group. This ishelpful because patients often reportreceiving only limited information atdiagnosis, whereas referral to the BLF /Breathe Easy group can provide anotherearly source of information andsupport, to enhance the opportunitiesfor understanding their condition andwhat they can do to manage it

• It is not easy to measure impact onhealth care resource use for smallgroup numbers, but patient-reportedmeasures and personal storiesemphasise the value of group supportin enhancing quality of life andconfidence which provides a powerfulmessage.

ContactRebecca GowersDevelopment Officer,Midlands Region (BLF)Email: [email protected]

Sharon MaguireService Improvement andDevelopment Manager,Long Term Conditions(NHS Stoke on Trent)Email: [email protected]

29Acknowledgements

Acknowledgments

NHS Improvement - Lung would like tothank all national improvement projectsites for their hard work and dedicationto improve quality and care for peoplewith COPD, and for their contributions tothis document.

In addition, the following people haveprovided a source of expertise andsupport and their help is gratefullyacknowledged:

Phil Duncan, Director,NHS Improvement - Lung

Ore Okosi, National Improvement Lead,NHS Improvement - Lung

Catherine Thompson, NationalImprovement Lead, NHS Improvement -Lung

Alex Porter, Senior Analyst,NHS Improvement - Lung

For more information pleasecontact: Catherine Blackaby,National Improvement Lead, NHSImprovement - Lung, Email:[email protected] Zoë Lord, National Improvement Lead,NHS Improvement - Lung, Email:[email protected]

30 References

i An Outcomes Strategy for ChronicObstructive Pulmonary Disease (COPD)and Asthma in England, Department ofHealth, July 2011

iiThe National COPD Resources andOutcomes Project Final Report, ClinicalEffectiveness & Evaluation Unit, RoyalCollege of Physicians, London, May 2009

References

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NHS Improvement’s strength and expertise lies in practical service improvement. It has over adecade of experience in clinical patient pathway redesign in cancer, diagnostics, heart, lung andstroke and demonstrates some of the most leading edge improvement work in England whichsupports improved patient experience and outcomes.

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