Making Waves: RIPPLE 2, evaluation of a new model of care for people with COPD

Evaluation of the MAKING WAVES: RIPPLE 2 Spread Project July 2018

Produced by:

The School of Nursing, Midwifery and Health Faculty of Health and Life Sciences, Coventry University

Design and Production:

Photographs by Joy Monkhouse and Fresh@CU (images reproduced from the Making Waves film with thanks to Fresh@CU) Artwork and Illustrations by Joy Monkhouse and Dominic Leatham The School of Art & Design, Faculty of Arts and Humanities, Coventry University

Acknowledgements:

The Making Waves evaluation team would like to thank all the participants from the Making Waves clinics who gave their time to take part in the evaluation. The team would also like to thank the project workers and clinical staff from each of the Making Waves sites. Thanks also to Dr Katherine Wimpenny, Reader, Coventry University for her time and advice. Finally, we would like to thank James Breakwell for all his help and support.

Coventry University Evaluation Team: Chief Investigator

Dr Alan Taylor

Senior Investigator

Dr Louise Sewell

Communications Lead Joy Monkhouse Health Economist

Dr Amir Khan

Field Researcher Team: Victoria Fessey

Michelle Kerslake Vicky Lord Sean Lowton-Smith Research Assistants: Sophie Krumins Joanne Kelly Making Waves Project Board: Paul Dodd (Project Lead) Dr Colin Gelder (Clinical Lead) Sarah Gray (Regional Service Development Manager, British Lung Foundation) Funded by The Health Foundation

Evaluation Report first printed July 2018, Coventry University View the Making Waves film https://www.youtube.com/channel/UC71prOnF8xI6aX3Hdw6iHvg https://copdmakingwaves.coventry.domains

Contents Executive Summary

6

Project Background and History

10

Making Waves Overview and Aims

13

Evaluation Methods

16

Findings: Process Evaluation and Site Overviews

22

Perceived Impact and Learning: Key Themes

29

Participant Evaluation

34

Healthcare Utilisation Evaluation

49

Conclusions and Recommendations

52

EXECUTIVE SUMMARY Introduction The Making Waves project aimed to establish and develop community clinics for people living with COPD in the Midlands, UK. This report presents the findings of an outcome and process evaluation of this project.

Chronic Obstructive Pulmonary Disease (COPD) is a leading cause of unplanned hospital admissions and disability in the UK. This presents a major challenge to health and social care resources.

People who have COPD are primarily limited by symptoms of breathlessness, cough and fatigue but also experience significant secondary problems of reduced mental well-being and social isolation. Uptake to effective and evidenced based interventions such as pulmonary rehabilitation is low and there is limited opportunity for people with COPD to receive support to help them to manage their disease.

An assets-based approach to addressing the issues of reduced mental well-being and social isolation for people living with COPD was developed in Coventry in 2015. The Health Foundation funded RIPPLE (Respiratory Innovation: Promoting Positive Life Experience) project was a community clinic which aimed to address issues of social isolation and reduced mental well-being. This was a co-created initiative involving partnership working across third sector organisations and NHS services.

The weekly RIPPLE clinic provided a space for people with COPD to meet, provide mutual support and also benefit from regular clinical input and advice from a community respiratory team. This project was shown to reduce levels of social isolation and an improvement in mental well-being was observed.

Following the success of the Coventry RIPPLE project, further funding was provided by The Health Foundation to spread this innovative model across other sites in the East and West Midlands. This project, known as ‘Making Waves’ supported the development of six further clinics in:

- - - - -

South Central Birmingham CCG (Breathe Well, Take Control) Dudley CCG (‘Airtime’) Wolverhampton CCG (‘TWIRL’) South Lincolnshire CCG (‘Happy Breathers’) Nottingham North and East CCG (‘Take a Breather’) - Northampton CCG (‘Breathing Space’)

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Making Waves: RIPPLE 2 Spread Project Report

Evaluation Methods The aim of the evaluation of the Making Waves project was to report on the spread of the community clinic model. The aims of the evaluation were: - To provide a narrative overview of the experience of each of the six new Making Waves clinics - To undertake a process evaluation of the project and identify key learning points from the clinic coordinators and the wider project team - To collect baseline information from all Making Waves clinics (including Coventry RIPPLE) regarding demographics, health care utilisation, and health status data in order to describe the population that attend Making Waves clinics to understand how this intervention can integrate with current respiratory services - To observe changes in health status across the duration of the project - To measure participants’ ability and readiness to self-manage their COPD - To evaluate the costs of the project Field researchers from the Coventry University evaluation team were attached to each clinic to facilitate the evaluation. Participants completed a questionnaire to provide demographics and selfreported health care utilisation information.

The impact of their COPD was measured by: The COPD Assessment Test (CAT) and The Medical Research Council (MRC) Breathlessness Scale.

Mental well-being was measured by: The Warwick Edinburgh Mental Well-Being Scale (WEMWBS) and The Hospital Anxiety and Depression Scale (HADS).

General health status was measured by: The EuroQol 5D Quality of Life Scale. Participants’ readiness and ability to selfmanage their COPD was assessed using The Long-Term Conditions 6 (LTC6) questionnaire and the Patient Activation Measure (PAM).

Data was collected from participants at baseline, 3 month and 6 month time points.

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Findings The evaluation period ran from April to December 2017. A total of 145 participants consented to take part in the evaluation across the six new Making Waves clinics and the existing Coventry RIPPLE site. Participants had attended the clinics for an average of 29 weeks prior to the beginning of data collection.

Qualitative data gained from individual sites overwhelmingly highlighted that the clinics were highly valued by participants and they spoke of how the clinics had improved their overall well-being and helped to reduce social isolation. An evaluation of the process of the innovation spread underlined that effective use of local assets and partnerships are crucial to success. It was noted that involvement of commissioners and clinical teams were key to the clinics’ development. Some sites reported that was difficult to initiate and maintain clinical involvement. A common issue recognised by several sites was that NHS staff found it difficult to change working practices in order to become involved in the clinics.

Evaluation of baseline data revealed that Making Waves participants had a lower level of health status at baseline (as measured by the COPD Assessment Test) when compared to people with COPD who attended pulmonary rehabilitation programmes in the UK. Baseline HADS scores also indicated that 44% of Making Waves participants may be anxious and 54% may be depressed. 38% of Making Waves participants lived alone and 11% of Making Waves participants reported that they are current smokers. 68% of Making Waves participants had an MRC breathlessness score of 3 or higher.

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One third of all participants stated that that they had not attended a pulmonary rehabilitation programme. Half of all participants had low levels of activation to self-manage their COPD as measured by the Patient Activation Measure.

Statistically significant improvements were noted in health status after 3 and 6 months. CAT scores increased significantly after 3 months and the largest improvement in CAT scores at 3 months was noted in participants’ level of confidence to leave the house.

Scores for the EQ5D and CAT also improved significantly from baseline to 6 months in the 67 participants with complete datasets. Notably, improvements were observed levels of activation to self-manage (as measured by the PAM) with 35% of participants increasing their PAM activation levels by the end of the 6 month evaluation period.

The average reported cost of running a Making Waves clinic was £26,088.

64% of all running costs were accounted for by premises and staff costs. Further economic analysis revealed that there was a declining trend for participants to use NHS resources. Initial data collected by the Northamptonshire site signalled a potential cost saving in six-month period to £10,480 or an annual figure of £20,960.

Conclusions This evaluation demonstrates that the Making Waves clinics provide a highly valued intervention for people with COPD. They were attended by a population that has lower health and psychological status compared to people who access pulmonary rehabilitation programmes in the UK. There were observed improvements in health status and activation to self-manage over the evaluation period. The findings support the conclusion that Making Waves clinics appear to help to reduce social isolation. There is preliminary evidence that suggests that the clinics may result in a reduction in health care utilisation.

The Making Waves project required multisystem working and effective collaboration. Spreading this innovation from the original Coventry RIPPLE model has been complex for all partners. Evaluation of multiple sites across several localities is challenging and future studies should ensure that evaluation is more closely aligned with the launch of clinics. Further work is also needed to assess the ongoing impact of individual clinics as new participants join. Most importantly continued engagement of commissioners and clinical teams is crucial for their ongoing development and success.

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1. PROJECT BACKGROUND AND HISTORY COPD is a major health problem in the United Kingdom (UK). It is the second most common cause of NHS emergency admission and causes 1 in 20 deaths in the UK (British Lung Foundation 2016)1. COPD is characterised by cough, phlegm and breathlessness, and individuals living with the condition commonly experience lowered self-esteem, reduced mobility and reduced quality of life. In addition, a significant percentage of individuals with COPD have other Long Term Conditions (LTCs), including anxiety and depression, which further impact on their health and well-being and compound social isolation. People with severe disease can experience a negative spiral, where increased social isolation leads to anxiety and loss of confidence, which then in turn leads to further isolation and increases anxiety. Both anxiety and poor self-management are important causes of unscheduled admission to hospital, which negatively impacts on the ability to self-manage.

People with long term conditions such as COPD are substantial users of the health service. However, they are likely to spend less than 1% of their time in contact with health professionals. (NHS England 2014)2. It is therefore very important that people are empowered to self-manage their own conditions.

The RIPPLE project model The original Health Foundation funded RIPPLE project was a new model for a community-based clinic that used both clinical and social support and it commenced in early 2015 in Coventry. Coventry is a Marmot City with high levels of deprivation, social isolation, low levels of literacy and a 10-year difference in healthy life expectancy between different local authority areas. The RIPPLE project grew out of a stakeholder consultation event that invited local people with COPD and carers, health professionals, third sector organisations and academics to an open space event, where innovative solutions to the loss of well-being caused by COPD were discussed. The RIPPLE project applied an asset-based community development approach. The aim was to improve well-being and reduce the high levels of anxiety and social isolation observed in individuals with severe COPD in Coventry.

The RIPPLE clinics were based in a community venue. During the RIPPLE clinics people with COPD had the opportunity to share their experiences with one another, engage in social activities and take advantage of clinical support and education and was delivered by regular support from a respiratory consultant and a respiratory nurse.

1 2

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British Lung Foundation Battle for Breath Report https://www.blf.org.uk/policy/the-battle-for-breath-2016 NHS England Five year forward view http://www.england.nhs.uk/ourwork/futurenhs/ (2014)

Making Waves: RIPPLE 2 Spread Project Report

The RIPPLE clinics included elements of selfmanagement, relaxation, healthy eating, exercise and practical advice such as use of inhalers, rescue packs and oxygen.

In addition to the clinical elements, there were facilitated activities so the clinic could become a participant-led activity, wherein the specific needs of participants are addressed as, and when they arise. Partnership with the Third sector is intrinsic to this assets-based model, as local community organisations are best placed to provide certain aspects of the holistic process, regarding sustaining community engagement and understanding the assets of local communities.

The self-management and peer advice activities provided an opportunity for health professionals to contribute their expertise on a variety of issues relevant to the participants. One example of this included a session on ‘planning a holiday’. The Third sector partners provided the necessary information re location, offers through agencies and insurance, and the clinical team provided information related to preparation of medication and ordering oxygen cylinders. Participants themselves shared coping strategies on how to minimise the impact of COPD on their holidaymaking, and encouraged each other to go on holiday despite their severe COPD. A key characteristic of the RIPPLE clinic was the informality of the setting.

The clinic enabled health care professionals to interact with participants, build rapport and get to know people based on regular, individual interaction. This gave health professionals a more accurate understanding of a person’s health needs, which may not always be picked up in a more formal clinic appointment. As trust was built between patient and professional, patient confidence increased and any doubts reduced achieved with the encouragement of third sector partners. Participants began to approach professionals about their condition and thus more actively took responsibility for managing their own health. A striking feature of the RIPPLE clinic was that participants relaxed, asked questions that they had not been confident to ask in a traditional clinic setting. Additionally, they listened to and acted upon the answers given, particularly when reinforced by other participants within their peer group.

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One of the key successes of this project was that individuals and organisations from a wide variety of backgrounds began to trust each other and work together cooperatively. Early in the RIPPLE project, it became clear that different organisations had different cultural and linguistic values leading to misunderstandings. These were rectified by having a regular open and honest dialogue that enabled a trusting shared relationship to emerge.

The project enabled individuals with COPD to be more active, involved in the community and improve their self-care. This resulted in increased mental well-being, increased confidence of their own ability to self-manage their condition and preliminary evidence of a reduction in unplanned hospital admissions. The RIPPLE project had thus evolved an innovative way of integrating the social and medical models of care for people with COPD.

From RIPPLE to Making Waves The model utilised in the RIPPLE project demonstrated positive outcomes, so the aim of the Making Waves project was to further spread and evaluate this assets-based Community Clinic model to six further sites across the Midlands. This project matched the desire expressed in the Five Year Forward View (NHS England 2014)3 that:

‘The NHS will become a better partner with voluntary organisations and local communities.’

Delivering the Making Waves model required health care specialists to overcome traditional ways of thinking and ‘fixing’ and instead approach and involve participants as co-decision-makers. Therefore, moving towards a more asset-based approach where people with COPD, carers and other stakeholders are able to operate as a collaborative team.

3

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NHS England Five year forward view http://www.england.nhs.uk/ourwork/futurenhs/ (2014)

Making Waves: RIPPLE 2 Spread Project Report

2. MAKING WAVES OVERVIEW AND AIMS The overall aim of the Making Waves project was to spread the model, developed within the original Coventry RIPPLE project, across six other local health economies within the East and West Midlands Region.

The project invited local health economies to submit an expression of interest, to apply and test new methods of developing a community based clinic, for people with respiratory illness within the East and West Midlands Regions.

The Making Waves project aimed to seed fund and support six sites with their development model that had the key successful attributes from the initial Coventry RIPPLE project. The project explicitly welcomed additional local innovation. The six project sites would be able to display local innovation and evolution based around key critical components of the existing RIPPLE model.

The sites were asked to ensure that:

 People with COPD were included to co-produce a local model  There was an assets-based approach to the community clinic  Clinics were based in local communities  Third Sector and cross sectorial partners were included to

co-deliver the model

mental well-being were included

development of the model

 Interventions and strategies to improve  There was a focus on physical well-being  Social inclusion was a key objective of the  Clinical input was offered at consultant or

nurse level with engagement of associated health professionals  Self-management support was provided that included peer-to-peer sessions (supported with British Lung Foundation self-management materials)  Understanding of local transport solutions for participants

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The project offered: • Seed funding of up to £25,000 per site to initially support the set up and

running of the model • Dedicated support and advice in setting up and running the clinics, including

advice from a dedicated clinical consultant • Dedicated support regarding change management dimensions and how

best to collaborate with potential partners Locally tailored British Lung

Foundation self-management literature • Detailed evaluation of the project via embedded researchers from

Coventry University • Knowledge sharing across all six sites Short expressions of interest were invited from interested health economies, which briefly outlined how the proposal fulfilled the criteria listed below. There were informal face-to-face discussions with all interested sites prior to formal expressions, so all parties were clear on the scope and complexities of the projects.

Expressions of Interest were evaluated by a committee made up of clinicians, Third Sector providers, RIPPLE participants, NHS programme management staff and University evaluators.

Making Waves Project Site: Criteria for inclusion

    

Must be located within the East or West Midlands Region To include patients/carers as co-producers of the project A desire to include local Third Sector providers Clinicians to be involved in the model Need to have fidelity to the key aspects of the RIPPLE model whilst

displaying local innovations  A history of working collaboratively on projects within their health economy  Board level sign up to the project  An open approach to working with a wide range of stakeholders  An enthusiasm to carry forward learning and improvements towards a

business as usual approach  Ability to develop a stakeholder board for the project  The willingness to support the dissemination of the project outcomes

to other health economies via case studies, publicity materials and

appropriate conferences/events  The ability and enthusiasm to influence change via levers within the system  Need to have dedicated project management or responsible manager/ coordinator  Need to capture data and work closely with Coventry University evaluators

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Making Waves: RIPPLE 2 Spread Project Report

Spalding Lincs

Coventry

Nottingham

Dudley Northhamptonshire

Wolvehampton South Birmingham

The Making Waves Sites: The following six sites were successful in securing project funding for a Making Waves Clinic: - - - - - -

South Central Birmingham CCG (Breathe Well, Take Control) Dudley CCG (‘Airtime’) Wolverhampton CCG (‘TWIRL’) South Lincolnshire CCG (‘Happy Breathers’) Nottingham North and East CCG (‘Take a Breather’) Northampton CCG (‘Breathing Space’)

The existing Coventry (‘RIPPLE’) clinic secured continued funding, and it was agreed that this clinic would be included in the participant evaluation of this report.

Stakeholder events were held in each site from spring 2016. The first clinic to launch was Wolverhampton (TWIRL) in July 2016.

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EVALUATION METHODS The aim of the evaluation of the Making Waves project was to report on the spread of the community clinic model. The evaluation objectives were based upon goals and expected outcomes from the Making Waves model which are outlined below and which were focused at the level of the individual participant:

SHORT TERM GOALS

LONG TERM GOALS

OUTCOMES

• Improvement in inhaler technique • Medicines optimisation • Verification of diagnosis • Increased patient self-efficacy • Increased participant mental well-being • Increased patient understanding and thus iiiiiself-management of their COPD • Fewer exacerbations

• Improved Quality of Life Years iiiiifor those with COPD • Decreased hospital admissions • Decreased anxiety and increased iiiiiwell-being in participant and iiiiicarers • Satisfied and engaged clinical iiiiistaff

• Healthier and less iiiiivulnerable community of iiiiipeople with COPD • Amelioration of budget iiiiipressures on a struggling iiiiihealth economy

There were three main areas of inquiry, mapped back to the outcomes and goals above: 1. Process evaluation and site overviews 2. Participant evaluation 3. Health Utilisation and cost evaluation

Ethical Approval This evaluation was reviewed and approved by Coventry University Ethics Committee on 01.11.2016. Full IRAS Ethical and Health Research Authority Approval was obtained on 23.01.2017 (IRAS project ID 207109, REC reference 16/EM/0502). Local permissions to commence the site evaluation delayed the start of data collection until the end of April 2017.

Participant Recruitment Participants of each Making Waves site were asked to consent to be part of the evaluation. Recruitment to the Making Waves Evaluation was entirely voluntary.

Each participant was provided with a Participant Information Sheet and asked to take this home to read. Informed written consent was then obtained at the following week’s session.

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Making Waves: RIPPLE 2 Spread Project Report

Evaluation Team Field Researchers A field researcher from Coventry University’s Evaluation Team was assigned to each Making Waves site and oversaw the process of gaining consent and data collection. They also ensured that data was collected at 3 month and 6 month time points, where possible, for each study participant.

1. Process evaluation It was recognised that there was a need to understand the experience of each Making Waves clinic and to also to understand the barriers and facilitators relevant to the success of the Making Waves clinics. Data was collected by field researchers and evaluation team members during visits to sites, group discussions, project meetings and collaborative site meetings.

Each Making Waves clinic was allocated a field researcher. Field researchers collected data during their Making Waves site visits and captured discussions and interaction with Making Waves clinic workers, participants and carers in the form of field notes. Discussions at project board meetings and at collaborative Making Waves site events were also captured by the evaluation team via the use of field notes. Written consent (‘model release’) was gained from participants for all components, including the use of photographs, videos and narratives, and once obtained this was kept in a locked filing cabinet at each site.

Each field researcher was asked to provide a site narrative or overview which included information relating to how the clinic was established, what partnership working existed and how the clinic model operated. Narratives from the Making Waves sites were discussed at evaluation team meetings and findings were synthesized by the lead investigators. Themes relating to the impact of the clinics and learning from the innovation spread were then identified and further developed by the Lead investigator and fed back to Project Board as well as to everyone involved in the project through the collaborative events.

It was initially anticipated that this evaluation of the process would be participatory in nature and would take place in collaborative Making Waves site events. There were however challenges in further refinement of the themes due to limited engagement at these events and thus the participatory nature of the planned evaluation was not fully realised.

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2. Participant Evaluation The primary objective of the quantitative participant evaluation was to describe characteristics of the population of people with COPD who attended the Making Wave clinics. A traditional ‘pre-post’ study design to evaluating the outcome of the clinics was not considered appropriate. Although all the clinics were based upon common ‘pillars’, they were also, by definition, asset-based in nature so were inevitably individual in nature. The evaluation was therefore not able to pre-determine the intervention itself or the ‘dose’ of the intervention.

In addition, the minimal clinical differences for measures were not known this particular population. Notably, a control or comparator group could not be incorporated into this design, so any changes in outcomes could not be attributed to the Making Waves intervention.

The agreed primary objectives of the participant evaluation were therefore to:

- Collect relevant demographic information in order to describe the

population studied. This included age, gender, employment status and details of participants’ social situation

- Collect relevant self-reported health care utilisation data, including

self-reported data relating to the number of COPD exacerbations, hospital admissions due to COPD and previous referral and uptake to pulmonary rehabilitation programmes

- Collect surrogate clinical information to describe the level of disability - Collect information regarding psychological and general health status

using validated outcome measures

- To measure participants’ ability and readiness to self-manage their COPD A secondary objective was to capture any changes that occurred in mental well-being, self-management ability and health care utilisation throughout the six month evaluation period. The analysis of this data aimed to establish the sensitivity to change of the selected metrics and would help to inform any future projects.

Please note improvement in inhaler technique, medicines optimisation and verification of diagnosis, could only be dealt with by members of the clinical team at each site, and this was therefore outside the scope of this evaluation.

Outcome Measures Used: Participant reported outcomes were completed once informed written consent had been completed. The outcomes collected are listed below. All questions and measures were included in the Project Evaluation Booklet and this was completed at baseline, 3 months and 6 month time points. All measures were piloted at the RIPPLE group in Coventry and the TWIRL Group in Wolverhampton, to assess their validity and ease of completion. The booklet was completed at each site as part of the session and participants were offered assistance to complete these by the project coordinators.

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Making Waves: RIPPLE 2 Spread Project Report

Demographic and health utilisation data: Participants were asked to complete a project evaluation booklet that contained questions relating to participants’ age, gender, time in full time education, employment status and social status. The questionnaire asked participants to indicate their smoking status, whether they have previously attended pulmonary rehabilitation, and whether they used oxygen. Participants also provided details related to hospital admission because of their COPD, and if they had seen a GP. Surrogate clinical indicators: COPD Assessment Test (CAT) (Jones et al 2009)4 is an eight item questionnaire that aims to measure the impact that COPD has on a person’s life. The items ask about levels of cough, phlegm, chest tightness, breathlessness when climbing stairs or walking up a hill, ability to complete activities at home, confidence when leaving the house, ability to sleep and energy levels. Participants indicate their level of symptoms in these areas on scale from zero to five with higher scores indicating a higher symptom burden.

Medical Research Council (MRC) Breathlessness Scale (Fletcher 1960)5 is a well-documented five point scale that asks participants to indicate their current level of disability as a result of breathlessness. Higher scores indicate higher levels of disability. The scale ranges from level one (“I am not troubled by breathlessness except on strenuous exercise”) to level five (“I am too breathless to leave the house, or I get breathless when dressing and undressing”)

4

Jones PW, Quirk FH, Baveystock CM, Littlejohns P. A self-complete measure for chronic airflow limitation - the St

George's Respiratory Questionnaire. Am Rev Respir Dis 1992;145:1321-7.

5

Fletcher CM (1960) Standardised questionnaire on respiratory symptoms: a statement prepared and approved

by the MRC Committee on the Aetiology of Chronic Bronchitis (MRC breathlessness score). BMJ 2:1665

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Well-Being and General Health Status: Warwick Edinburgh Mental Well-Being Scale (WEMWBS) (Tenant et al 2007)6 is a validated measure of positive mental health. It consists of 14 item questionnaire where participants indicate their experience of each item over the past two weeks.

Each item is scored one to five which produces an overall range of scores from a minimum of 14 to a maximum score of 70. Higher scores indicate higher levels of positive mental health. Scores of approximately 50 have been documented in a similar aged population to those participants evaluated in this project (Mason and Kearns 2013)7.

Hospital Anxiety and Depression Scale (HADS) (Zigmond and Snaith 1983)8 is a widely used measure of psychological status consisting of seven questions that ask about levels of anxiety and seven questions exploring levels of depression. The scale produces a score for depression and a score for anxiety.

Higher scores indicate higher levels of anxiety and depression and scores over eight may indicate the probable clinical significance (Zigmond and Snaith 1983)8.

EuroQol 5D Quality of Life Scale (Herdman et al 2011)9 is a widely used questionnaire that measures health across the five questions relating to mobility; self-care; usual activities; pain/discomfort; and anxiety/depression. Responses to these questions are presented as frequency distributions for a group of respondents. Participants were also asked to complete a 0 to 100 scale that asks “How would you rate your health today?” Higher scores for this item indicate better health status.

Self-Management Ability and Readiness: Long Term Conditions 6 questionnaire (LTC6) (NHS 2012)10 was used to assess the level of support offered to participants in the past 12 months, to help them to manage their disease. This questionnaire consists of six questions that ask participants about the level of involvement, information and support they have had to manage their long term condition in the past six months. This LTC6 also asks about their levels of confidence to manage their own health. One of four responses to each question are required e.g. not at all, rarely, some of the time, never. Responses were presented as frequency distributions for a group of participants.

Patient Activation Measure (PAM) (Hibbard et al 2007)11 is an NHS England recognised tool, which assesses an individual’s knowledge, skill, and confidence for managing their health and healthcare. It underpins an asset-based approach

Tennant R, Hiller L, Fishwick R, Platt S, Joseph S, Weich S, Parkinson J, Secker, J, Stewart-Brown S: The Warwick-

6

Edinburgh Mental Well-being Scale (WEMWBS): development and UK validation. Health Qual Life Outcomes 2007, 5:63.

7

Mason, P. and Kearns, A., 2013. Physical activity and mental wellbeing in deprived neighbourhoods. Mental Health

and Physical Activity, 6(2), pp.111-117.

8

Zigmond AS, Snaith RP. (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand; 67: 361–370.

9

Herman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., Bonsel, G. and Badia, X., 2011. Development and

preliminary testing of the new five-level version of EQ-5D (EQ-5D-5 L). Qual Life Res, 20(10), pp.1727-1736.

10

QIPP LTC Year of Care Funding Model Project Team. QIPP Long Term Conditions—Supporting the Local

Implementation of the Year of Care Funding Model for People With Long-Term Conditions. London, UK: Department of Health; 2012 https://www.gov.uk/government/uploads/attachment_data/file/215060dh_133652.pdf.

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that supports people to develop their capability to manage their own health and care by giving them information they can understand and act on, and providing them with support that is tailored to their needs. While patient activation is closely linked to other concepts such as ‘self-efficacy’ and ‘readiness to change’, it is a broader and more general concept, reflecting attitudes and approaches to selfmanagement and engagement with health and healthcare, rather than being tied to specific behaviours. The questionnaire produces a score between 0-100 with higher scores indicate higher patient activation levels. Participants are also placed into one of four levels on the basis of their responses.

These levels of activation are 12: • Level 1 - Disengaged and overwhelmed: Individuals tend to be passive and lack confidence. Knowledge is low, goal orientation is weak, and adherence is poor. Their perspective may be “My doctor is in charge of my health.”

• Level 2 – Becoming aware but still struggling: Individuals have some knowledge, but large gaps remain. They believe health is largely out of their control, but can set simple goals. Their perspective may be “I could be doing more”.

• Level 3 – Taking action: Individuals have the key facts and are building selfmanagement skills. They strive for best practice behaviours, and are goal orientated. Their perspective may be “I’m part of my health care team.”

• Level 4 - Maintaining behaviours and pushing further: Individuals have adopted new behaviours, but may struggle in times of stress or change.

Maintaining a healthy lifestyle is a key focus. Their perspective may be “I’m my own advocate.”

Health Utilisation and Economic evaluation The health economic evaluation of an intervention such as Making Waves require data of full resource use at site level and the data for corresponding health gains. The available site level resource use and cost data did not allow a full cost-effectiveness analysis for the intervention. However, participant level data was collected for NHS resource use during the intervention period. The evaluation therefore planned a descriptive approach to conduct an economic analysis which could hypothecate potential savings and demonstrate the overall impact on resource use. The detailed analysis on health gains was also documented based on important health outcome measures.

11

Hibbard, J.H., Stockard, J., Mahoney, E.R. and Tusler, M., 2004. Development of the Patient Activation Measure

(PAM): conceptualizing and measuring activation in patients and consumers. Health services research, 39(4p1), pp.1005-1026.

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PAM Level descriptions taken from https://www.insigniahealth.com/products/pam-survey

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3. FINDINGS Process Evaluation This section will firstly present an overview of how each Making Waves sites was established, details of partnership working and describe how each MW clinic operated. The main themes in relation to the perceived impact and learning from the Making Waves clinics will then be presented.

Site Overviews: Birmingham South Central: ‘Breathe Well, Take Control’ Establishing the service The group was launched with an open space event on 26th July 2016.

This was attended by two people who had COPD and alongside clinical professionals including a GP, a consultant in respiratory medicine from the Heart of England Foundation Trust, Birmingham and professionals from the British Lung Foundation. Their first weekly session took place on 7th September 2017 at the Norman Power Centre, with one person with COPD in attendance who had been referred by his GP. This clinic underwent a number of location changes in the initial stages with a subsequent move to The Women’s Enterprise Hub in Sparkbrook before making the MAC in Birmingham Cannon Hill Park its base for duration of the project. This was considered to be a good venue due to the picturesque surroundings and ability to take short walks in the park as part of activities in the group if desired.

Partnerships This project was delivered by Health Exchange, a third sector partner.

There has been some clinical support from a respiratory consultant and a respiratory nurse but this was not sustained.

The Model in operation The group met every Monday afternoon from 1-4 pm and a light lunch was provided, and the sessions were free for all participants. The group was usually attended by four to six members each week consisting of both men and women, from a variety of backgrounds. Health Exchange had surveyed their clients to see what they wanted to gain from the group and they desired to gain knowledge, personal health gain and socialising Activities undertaken included Tai Chi, which one client had requested, musical activities, crafts, seated yoga and other exercises, drumming workshop,

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Making Waves: RIPPLE 2 Spread Project Report

anxiety management, colouring sheets, crosswords left on the table as options, and mindfulness. There was intermittent attendance from clinical staff. This included a respiratory consultant and respiratory nurse would offer group based self-management information. In addition, they offered individual support to participants to answer any questions and give advice.

Whilst this group is small, it was clear that the participants had no desire to leave and did not want the group to be discontinued. The group planned to meet weekly or fortnightly for the immediate future but no new members seemed to be forthcoming and future funding was uncertain. Health Exchange have explored some interim funding from a sponsor (Pfeizer) as they also wished the group to continue.

Dudley: ‘Airtime’ Establishing the service Airtime was a weekly group supporting people with COPD (and other respiratory conditions) and their families in the Dudley Borough. Following a successful stakeholder event in June 2016, the Airtime group was co-created and they held their first session in July 2016. The early success of the group led to the appointment of a designated coordinator in September 2016 until the end of October 2017. The group is currently supported by staff from Dudley Council for Voluntary Service (CVS).

Partnerships The project was delivered by Dudley CVS in partnership with Dudley Clinical Commissioning Group (CCG), the Dudley Respiratory Team and Healthwatch Dudley. In addition, the group worked closely with local services, including the social enterprise ‘Lunch on the Run’, which provides training and work experience in catering for people with learning disabilities. They provided catering and hospitality services for the Airtime Group. There were also links with respiratory services including a maintenance pulmonary rehabilitation group.

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The Model in operation A core group of around 20 members met every Thursday afternoon from 1-3pm at the DY1 community building in Dudley town centre. The sessions were free and offered tea, coffee and a buffet lunch. Airtime provides varied and interactive weekly activities including appropriate exercise, professional support from health experts and information and advice about keeping well.

The sessions were designed to be fun, engaging and welcoming with a wide range of activities such as Tai Chi, seated yoga, art therapy, massage, seated aerobics, singing therapy, quizzes and Bingo, mindfulness and meditation, as well as health talks on mental health, medication and diet. Additional pulmonary rehabilitation sessions were also offered for a few months by Dudley Respiratory Team for one hour immediately before the Airtime group in the same location.

The group embraced an asset-based philosophy and sessions were delivered through engagement with local people and communities. The group have also explored the assets within the group that could be used in the future.

The group continues to evolve and attract new members. One member took part in a local People’s Network event where they championed the benefits of the group and shared their personal experiences. Members of the group also took a central role in the steering group with the CCG in order to help Airtime continue, which was a success. The group is set to continue in the immediate future and are in the process of planning the next phase of their journey.

Wolverhampton: ‘TWIRL’ - The Wolverhampton Integrated Respiratory Lifestyle Project

Establishing the service The submission from Wolverhampton was led by Wolverhampton CCG, in partnership with Wolverhampton NHS Trust. The service was advertised successfully prior to launching via press release (advertisement in the local Express and Star paper and The Wolverhampton Wanderers Website news section). The idea was to demonstrate the patient story, linking in with people with COPD who attended the stakeholder event, what it will mean to them, and what they would get out of the group. People with COPD were invited for a photo shoot at the Molineux, along with the Wolverhampton Wanderers mascot, a firefighter and clinical staff in uniform. It was also advertised via patient communications such as flyers for GP practices, community matrons, respiratory team, patient participation groups, practice managers, and Compton hospice. The project launch took place in July 2016 at the Molineux stadium in Wolverhampton.

Partnerships The project was delivered in partnership with Wolverhampton Clinical Commissioning Group (CCG), The Royal Wolverhampton NHS Trust, British Lung Foundation, Age UK, Compton Hospice and the Wolverhampton Wanderers Community Trust.

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Making Waves: RIPPLE 2 Spread Project Report

The Model in operation The group initially started with just over 20 people in attendance and progressively grew.

By November there were over 30 regular attenders, with the group numbers peaking at over 40s. The sessions offered free tea, coffee and a buffet lunch. TWIRL was supported by the community matrons, respiratory nurses, Age UK volunteers, respiratory consultants and the CCG. Patient volunteers were invaluable and will be coordinating the group in its new form going forward. The group plan to meet as a selffunding group until April 2018 when they plan to register as a charity. Ongoing support will also be provided by the CCG and Royal Wolverhampton NHS Trust.

Regular activities included Bingo, quizzes and a raffle. There was a regular exercise-based session, which included seated Tai-chi and yoga. Sessional activities were also included, such as singing for lung health and a tour of the Wolverhampton Wanderers museum. There have been many health talks such as, medication/ inhaler technique, how to cope in hot weather, diet, benefits of pulmonary rehabilitation, and social benefits, amongst many more.

South Lincolnshire: ‘Happy Breathers’ Establishing the service The submission from South Lincolnshire was led by the Head of Transformation at South Lincolnshire Clinical Commissioning Group and was strongly supported by local people with COPD. Extensive planning discussions were held following co-creation principles with people with COPD and their carers, who were clear in their understanding of their own needs, and how this could be supported by the Making Waves model. Many of those involved were already known to one another, and more socially integrated than in some of the other sites.

The group called themselves Happy Breathers and were supported and facilitated in their weekly meetings by the Lincolnshire Community Voluntary Service (CVS). They described their meeting as a clinic, and have developed a clear and consistent structure for the weekly meetings, which commenced in August 2016. 25 people with COPD, and 3 with other long-term lung conditions, were referred to the service, which has also supported 15 carers.

Partnerships The service was run by a project coordinator from the Lincolnshire Community Voluntary Service CVS. The local commissioner, who led the development of the South Lincolnshire service has been absolutely key, particularly in the ways that he has deliberately supported colleagues across the health economy to innovate, and to manage their anxiety.

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25

The British Lung Foundation provided self-management materials. Local community respiratory nurses have tried their best to provide consistent clinical support, this has not proven to be easy, due to short-staffing and the ways that workload monitoring is enacted by local trusts. Nurses struggled to justify their attendance at a clinic, which did not necessarily meet the needs of named patients they were tasked to support.

The Model in operation Happy Breathers takes place at the Ivo Day Centre in Spalding, Lincolnshire. Arrival and set up takes place between 1300 and 1400, then after any necessary introductions have taken place, there is usually a formal activity led by an invited facilitator or sometimes by one of the group members themselves. These sessions varied from singing, laughter yoga, gentle exercise, to activities specifically focussed on management of COPD. There was time after the formal activity for chat, tea and cakes, mutual support and catching up with the news. Activities were supported by the CVS group leader, who provided some games, colouring in, useful information, community information and facilitates peer-support; there was usually a nurse in attendance who can meet people on a one-to-one basis.

Imaginative use of the available funding, and a tight control over expenditure enabled the group to run for 18 months rather than the anticipated year. The group have worked closely with the facilitator and commissioner to develop a business case, and it’s anticipated that funding will be extended into financial year 2018-19.

Nottingham North and East: ‘Take a Breather’ Establishing the service Nottingham North and East Clinical Commissioning Group (CCG) led the successful bid which resulted in the establishment of a service in Arnold in the northern suburbs of Nottingham. Initially the CCG embarked on a process of consultation with partners and people with COPD, convening two collaborative workshops in 2016.

Particular local aims were to foster collaborative working with a wellestablished Breathe Easy group and also to deal with tensions between local communities, which impacted on the provision of services. Collaborative work across constituent parts of the local NHS also posed challenges.

Following changes in commissioning personnel within the CCG, the strategic commissioning approach chosen was to subcontract the work to Rushcliffe Community and Voluntary Service (CVS) - which then undertook to recruit staff, find premises and run the service. This took some time, and the CVS team marketed the service from October 2016 onwards, resulting in the group starting in January 2017.

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Making Waves: RIPPLE 2 Spread Project Report

The Nottingham group struggled to establish a referral route and to secure referrals. Overall there were 11 referrals, almost all of whom became committed to the group. There was respiratory nurse input, but no GP input or input from acute NHS respiratory services. Although the (lead) CCG was supportive, there was limited input from clinical staff. Rushcliffe CVS also devoted considerable time and effort to producing leaflets, and in marketing the service, included very successful local radio interviews.

Those who did attend tended to have heard about the service through local publicity, a community magazine, but there were also referrals from the community matron, a respiratory nurse, and the Breathe Easy group.

Partnerships The British Lung Foundation, through their regional staff, provided considerable support to the Nottinghamshire area, and it’s anticipated that the second phase of their Integrated Breathe Easy groups will support further development in this area.

In Nottingham, diagnosis, assessment and ongoing management were questioned by the participants, and the experience of participants differed widely. Some participants had little or no awareness of Pulmonary Rehabilitation, and support from GP practices was variable.

The complexity of geographical areas and CCG responsibilities resulted in major issues in Nottinghamshire. Workload pressures, and monitoring issues for Respiratory Nurses, who covered three separate CCG areas, meant that it was difficult to justify nurse attendance. Participants benefitted enormously from meeting healthcare professionals through the group, as they were unable to access all services that should have been available to them through their GP practices.

The Model in operation Members of the group would arrive between 1pm and 2pm on Tuesdays, and developed new social connections and friendships, swapping stories of their lung conditions, and learning from one another. In addition, the CVS project lead facilitated activities and introduced a range of speakers and activity leaders to the group. Participants enjoyed learning strategies to apply at home to make life easier, how to improve their use of medication, completed activities of daily living with less breathlessness, managed oxygen at home, and many different examples of exercises to improve breathing were sampled. Yoga and Tai chi, used from a seated position, were also found extremely useful.

Participants expressed their appreciation of the diversity in the group, commenting how they all enjoyed different things, and by having a range of activities meant that every week was enjoyable. Central to the positive experiences gained was that a carer of a participant, who also joined the group, baked and brought along a cake every week. And it was a different cake every week. Such small details meant a lot to the participants.

The CCG reviewed the service in September 2017 and funding for ongoing support was not forthcoming. The group has therefore closed.

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Northamptonshire: ‘Breathing Space’ Establishing the service Breathing Space was launched in September 2016 and the weekly clinics the project commenced in Daventry on the 1st November 2016 and Northampton on 8th November 2016.

Partnerships The clinics are delivered in partnership by Northamptonshire carers, Northamptonshire Healthcare NHS Foundation Trust and Nene Clinical Commissioning Group. The team consists of the group coordinator, staff from Northamptonshire Carers, a GP, counsellor, and nurses and physiotherapists from the RESpiratory Therapy Acute Response Team (RESTART). Several members also attend a local group called “Singing4 Breathing” which enables a ‘word of mouth’ referral system to Breathing Space within the local community.

The Model in operation Breathing Space clinics met fortnightly in each site on alternate weeks. Alongside the more traditional support group approach, they worked with health professionals who offer expert advice on the condition, how to manage it and how to look after their well-being. The meetings provided opportunities to share experiences, engage in social and fun activities, access to clinical advice from a GP or specialist nurse, sessions on relaxation, self-management, healthy eating, exercise and practical advice and access to emotional support service. The group members were encouraged to assist in running the group – suggesting and leading activities. Tea, coffee and lunch were provided free of charge.

The group at Northampton continues to grow and is planned to split the group into two – using two venues to continue and enable the inclusive approach.

In October 2017 Breathing Space was nominated for and won the Pathway Innovation of the Year at the National Primary Care Awards. The group hope that their success will enable them to expand the service throughout the county and into other long term health conditions. Funding for the project has been extended until April 2018. The team are putting together a proposal to the CCG for the project to be considered for permanent funding.

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Making Waves: RIPPLE 2 Spread Project Report

Perceived Impact and learning: Key Themes Data was collected in the form of field notes from fieldworkers and evaluation team members during visits to sites, group discussions, project meetings and collaborative site meetings. Field notes were compiled and evaluators agreed upon the following six themes which are briefly presented in turn: - Clinic Organisation and Structure - Clinical Input - Developing Partnerships - Communicating Outcomes - End of Life Issues - Developing and Evaluating a Complex Intervention Clinic Organisation and Structure It was evident that most sites followed the original model from Coventry RIPPLE in that there would be a co-created and structured approach to the Making Waves clinic sessions. It was notable that the one of most successful of the local projects (Northamptonshire) was fully co-created and led by a carers association in partnership with NHS staff, and this was recognised through a National Award 13.

Activities such as playing Bingo and having a weekly quiz appeared to be well received by most groups. These regular activities have offered opportunities for group members in some clinics to take responsibility for leading these activities. Field workers and coordinators reported that this has been helpful as it has given these participants a defined identity in the group participants.

“The reason why I come to Airtime is to meet people, have a chat, get some exercise and enjoy the company” Dudley Airtime participant

“I enjoy some of the activities.”

Birmingham Breathe Well, Take Control participant

The importance of time given within the session to socialise and gain support from each other was noted across all sites and was perceived a major reason for attendance. One notable asset that each group had was that of participants having the shared experience of COPD and were able to pool knowledge.

“Relief from solitary confinement, to be able to mix with like-minded people and not to feel embarrassed.”

Dudley Airtime participant

13

https://www.northamptonshire-carers.org/news/breathing-space-project-wins-national-award

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“I have been very lonely. Friends have stopped seeing me and inviting me out because I am too slow and need to stop all the time.

Something like this is so wonderful as I can make new friends and have something to look forward to each week”

“My breathing tests are so much better since beginning rehab and now I come here I really believe that this has helped me to keep these improvements going. I haven’t been in hospital for ages”

Wolverhampton TWIRL participant

Lincolnshire ‘Happy Breathers’ participant

Some sites have been mindful of the effect of challenging group dynamics as the clinics were established and they wanted to share this learning. There were examples of coordinators changing rooms or seating layouts to ensure that participants sat with differing group members from time to time. It was also noted that social activities, away from the usual clinic location, were important opportunities for participants to make new contacts with the group and this was seen an important element to foster. This approach was not adopted by all sites and some sites reported that it has become difficult to ‘disrupt’ established seating arrangements over time.

The assets-based nature of the project has helped some sites to respond to changing needs and circumstances. For instance, participants have now become volunteer coordinators in at least two Making Waves sites. One site has also had to respond to a change in their designated coordinator. In response to this challenge they undertook a session where they were able to take stock of the skills and assets with the group, to help them to identify areas that they required help and support with from the third sector organisation.

Clinical Input Clinical input was highly valued by participants as can be seen from these participant quotes:

“Attending the group has provided me with the skills/techniques to manage my condition …and for the first time I did not have to access my GP when I felt poorly due to my COPD”

“Excellent to have access to so many professionals, where you have longer to talk to them in a relaxed environment”

Northamptonshire Breathing Space participant

Wolverhampton TWIRL participant

“I’ve learnt more about my condition and how to manage it in one session than I have in the 4 years seeing my GP and the hospital consultant”

30

Northamptonshire Breathing Space participant

Making Waves: RIPPLE 2 Spread Project Report

Clinical support was also valued by clinic co-ordinators:

“By providing an environment for people to meet and to have a weekly focus, they are more equipped to manage their symptoms and to feel a greater sense of belonging.”

Dudley Airtime Project Worker.

The level of clinical input varied markedly across all sites. Some sites had more visible and consistent emphasis on clinical input to the sessions.

Northampton, Coventry and Wolverhampton were examples of sites where there was consistent clinical involvement from either primary or secondary care. These sites had an identified ‘clinical lead’ and were able to monitor inhaler technique, ensure pharmacological treatment was optimised and help to verify the diagnosis. Other sites received clinical input on a less regular basis and it wasn’t clear if this level of clinical intervention was carried out.

It should be noted that the issue of whether the lead clinician worked in primary or secondary care may have influenced the cohort demographic by influencing the referral pathways. These clinicians may have been more likely to refer patients directly under their care to the Making Waves clinics.

Several sites reported that was difficult to initiate and maintain clinical involvement. A common issue recognised by several sites was that NHS staff found it difficult to change working practices in order to become involved in the clinics. Health Care Professionals spoke of limited freedom to innovate.

This was most noticeable for nurses, who across all the projects, were unable to flexibly respond to group and participant need, because of workload management and other protocol issues. Nurses and health care professionals could see the benefit of a change in working practices, but could see no route to their participation.

Commissioners are likely to be key to this process. The commissioner working with the South Lincs clinic was able to discuss working practices with nurses, and others involved, to try to progress more informal support methods. This has had limited success but there were systemic pressures and performance monitoring processes which restrict options for nurses in particular.

Developing Partnerships Partnership working was a key pillar of the project and essential to the spread of the Making Waves model. There was evidence that the project has provided positive experiences of partnership working. For example, the Northamptonshire sites have developed links with their local COPD Singing Making Waves: RIPPLE 2 Spread Project Report

31

group, The Dudley group has links with a social enterprise cafe and the Wolverhampton clinic is looking to develop a more formal partnership with the British Lung Foundation.

However, the ease of creating these partnerships has varied enormously across the sites. In some areas there was limited trust within local partnership working. One example encountered was where clinical staff did not engage with services developed by a commissioning team due to personality issues.

Elsewhere initial enthusiasm and engagement was not sustained and there was a lack of referrals.

In another area there was a powerful voluntary sector organisation, closely interwoven with the commissioning organisation(s) of the NHS, but not clinical partners. Elsewhere there were excellent partnerships between commissioning and voluntary sector, but the culture of the NHS resulted in limited systemic partnership. Partnerships may also not work particularly well within the voluntary sector and there were examples of some tensions around area of operation, mandate to provide services and competition between agencies.

The spread sites were all able to explore the links and integration with Pulmonary Rehabilitation, smoking cessation and Increasing Access to Psychological Therapies (IAPT) teams as these relationships can add additional value and referral pathways to spread site projects.

Communicating Outcomes There have been difficulties communicating the learning from each of the Making Waves clinics.

Some clinics have a useful webpage to describe their service which is hosted by the Third sector partner. Effective communication between projects and NHS organisations has been more problematic because of restrictions, for example Firewalls, when emailing materials to NHS organisations. In addition, some sites have reported difficulty in accessing NHS systems in order to promote the clinic and establish effective referral pathways. The project was able to work around this by using an independent platform but issues of data governance and data sharing remained notable barriers in cross partnership working.

This is a complex model with no ‘one-size fits all’ solution to improving COPD care across varied sites and locations. Communicating the successes of the model and spreading the benefits across sites has involved a range of local and social media, but the use of ‘word of mouth’ between participants and clinicians remained a dominant form of communication. However, the success of this strategy was variable. For example, several members of the South Lincolnshire clinic (Happy Breathers) stated that they found out about the

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Making Waves: RIPPLE 2 Spread Project Report

group by chance. A problem expressed by several sites was: “how do we get GPs to know?” Group attendees from the Nottinghamshire group were clear that there needed to be more info at GPs’ surgeries, and accessible leaflets publicising the service. Some felt that notices in the GP surgery would help.

There was also a lack of clarity about how various local services integrate.

Similarly, as is recognised nationally, carers really want to be involved but it remains unclear as to how this can be well-implemented.

End of Life Issues Several sites noted that they needed to address questions and discussions regarding end of life care that arose following the death of Making Waves clinics’ participants. Discussions with these sites highlighted that discussing participants’ questions and thoughts regarding managing end of life in COPD during these times were well received. This was an area that has been commonly considered to be poorly addressed in traditional models of care for people with COPD. Additionally, the Making Waves the clinics provided a safe and appropriate forum to offer support to participants regarding these issues.

Delivering and Evaluating a Complex Intervention The Making Waves project as a whole brought together many partners from differing organisations with contrasting working cultures, expectations and practices. This project was extremely complex in nature, and as such has presented stakeholders with needing to negotiate numerous barriers in its implementation and this has at times been both rewarding and stressful.

The evaluation of a multi-agency project working with the NHS across 7 different localities was also multi-layered and complex. The process for obtaining Health Research Authority approval and local research permissions across NHS organisations was exceptionally complicated and delayed the start of the evaluation. These systems are difficult to negotiate and not helpful or flexible enough to support the evaluation of projects like Making Waves that aim to spread innovation.

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Participant Evaluation: This section details the results of the demographic and questionnaire data.

These data was collected at three separate time points: baseline, 3 months and 6 months.

It should be noted that baseline data does not indicate that data was collected from participants before they attended a Making Waves clinic for the first time. Baseline data collection was only able to commence in mid-April 2017 once full IRAS and Health Research Authority approval and local permissions had been gained. All Making Waves sites had launched before this date and all participants had been attending for some time. The mean time from date of first attendance to baseline data completion is detailed in table 2 below.

Data was collected from Coventry RIPPLE as part of this section of the evaluation. It was hypothesised that this group may have a higher level of health status when compared to the six newer sites. However, comparison of baseline values between Coventry participants and the other six sites for measures of health status, revealed that there were no significant differences for any measure other than in the COPD Assessment Test (CAT), where Coventry participants actually had a higher (i.e. worse) score at baseline (p=0.02).

BASELINE DEMOGRAPHIC DATA:

A total of 145 participants from all seven sites gave informed written consent to be part of the Making Waves evaluation. Table 1 details the numbers of participants from each site.

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Making Waves: RIPPLE 2 Spread Project Report

Table 1: Numbers of participants from each Making Waves site at baseline

n 5 27 20 16 43 7 27 145

MAKING WAVES Birmingham Coventry Dudley Lincolnshire Northampton Nottinghamshire Wolverhampton Total

% 3.4 18.6 13.8 11.0 29.7 4.8 18.6 100%

Table 2 provides information regarding the average number of weeks that participants had attended at the baseline data collection time point.

As expected, the average weeks attended before data baseline data collection was longer at 29 weeks if Coventry RIPPLE participants were included. This average number of weeks from first Making Waves clinic attendance to baseline data completion was 21 weeks if participants from Coventry are excluded. This understandably reflects the fact that the Coventry clinic has been in existence for a longer period of time prior to baseline data collection when compared to the other sites.

Table 2: Number of weeks between first attended site and until first completion day Statistic

All sites (including Coventry)

Without Coventry

Observation

141

114

Mean

29

21

Standard deviation

28

14

Minimum

0

0

Maximum

116

56

The number of weeks from first MW clinic attendance to completion of baseline data is shown in Figure 1 for all participants.

Making Waves: RIPPLE 2 Spread Project Report

35

0

10

20

Number of Participants

30

40

Figure 1: Weeks from first Making Waves attendance and baseline data completion (all sites)

0

20

40

60

80

Number of weeks since first attendance

100

120

Baseline demographic information can be found in Table 3. The mean age of participants was just over 72 years and ranged from 57 years to 90 years.

These are identical to the mean age reported in the secondary care COPD clinical audit report (RCP 2015 COPD: Who Cares Matters)14. but are older than the mean age of 69 years reported in the recent Audit of Pulmonary Rehabilitation Programmes (RCP Pulmonary rehabilitation: An exercise in improvement)15. This may indicate that participants attending a Making Waves clinic were similar to a secondary care population. There was a range of mean ages across the MW sites ranging from 68.8 years (Dudley) to 77.3 years (Nottinghamshire) - see Figure 2.

Figure 2: Mean Age of Making Waves Participants per Site

Stone RA, Holzhauer-Barrie J, Lowe D, et al. COPD: Who Cares Matters. National Chronic Obstructive Pulmonary Disease (COPD) Audit Programme: Clinical Audit of COPD Exacerbations Admitted to Acute Units in England and Wales 2014. Executive summary. London, England: RCP; 2015 14

15

Steiner M, McMillan V, Lowe D, Holzhauer-Barrie J, Mortier K, Riordan J, Roberts CM. Pulmonary rehabilitation:

An exercise in improvement. National Chronic Obstructive Pulmonary Disease (COPD) Audit Programme: Clinical and organisational audits of pulmonary rehabilitation services in England and Wales 2017. National report.

London: RCP, April 2018

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Making Waves: RIPPLE 2 Spread Project Report

Table 3: Baseline Demgraphic Information (all sites)

Age Sex Age left Education n (%)

Employment Status n (%)

mean (SD) yrs.

72.2 (7.7)

Male: female n (%)

68:77 (47: 53)

<16yrs

84 (57.9)

16yrs

34 (23.4)

17rs

7 (4.8)

18-20 yrs

7 (4.8)

21yrs +

13 (9.0)

In paid work

2 (1.4)

Retired

116 (80.0)

Looking for paid work

2 (1.4)

Unable to work because of 23 (15.9) long term sickness

Social status

Missing data

2 (1.4)

Lives alone

55 (37.9)

Lives with spouse or partner

73 (50.3)

Lives with other family

16 (11.0)

Lives in residential or nursing care

1 (0.7)

There were slightly more female participants (53%) than men. 80% of participants reported that they considered themselves as being retired. Over 60% of participants lived with a spouse or other family member but 38% reported that they lived alone. These figures seem to be slightly higher than the wider UK population as a recent Age UK report (Later Life in the United Kingdom 2018)16 that 32% of people over the age of 65 live alone.

16 Age UK â&#x20AC;&#x2DC;Later Life in the United Kingdomâ&#x20AC;&#x2122; Factsheet https://www.ageuk.org.uk/globalassets/age-uk/ documents/reports-and-publications/later_life_uk_factsheet.pdf

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Table 4: Baseline Surrogate Clinical Data

MRC Grade n (%)

Smoking status n (%) Previous attendance at pulmonary rehabilitation (PR)

Grade 1

8 (5.5)

Grade 2

37 (25.5)

Grade 3

48 (33.1)

Grade 4

25 (17.2)

Grade 5

25 (17.2)

Missing data

2 (1.4)

Current smoker

16 (11.0)

Ex-smoker

113 (77.9)

Never Smoked

16 (11.0)

Yes - in the past year

53 (36.6)

Yes - but longer than a year ago

45 (31.0)

No – didn’t feel able to attend

8 (5.5)

No – I have not been referred to PR

31 21.4)

Don’t know

6 (4.1)

Missing data

2 (1.4)

It was not feasible to record relevant direct clinical indices such as measures of airway obstruction but participants were asked to report their MRC grade, smoking status and whether they had previously attended a pulmonary rehabilitation programme. These are detailed in Table 4 and 5. The spread of MRC scores for all participants can be seen in Figure 3. A total of 98 participants reported an MRC score greater than that of 3. This figure reflects that 68% reported that they are either breathless when walking on the level, have to stop after 100 metres, breathless when dressing or undressing or are too breathless to leave the house (see table 5).

11% of participants reported that they were current smokers, which is significantly lower than those rates reported by the RCP Pulmonary Rehabilitation Audit15 of 22% and much lower than that of the 37% current smoking rate stated in the RCP Secondary Care Audit14.

The majority of participants had attended pulmonary rehabilitation with almost 67% reporting that they had previously attended a programme. The NICE Guidelines for COPD17 suggests that people with an MRC score greater than 3 should be referred to a pulmonary rehabilitation programme. Closer exploration of this data revealed that 23.5% of participants who had an MRC score greater than 3, either had not been referred or they could not recall being referred to pulmonary rehabilitation (see table 6). Only 5.5% of all participants reported that they had been referred to a pulmonary rehabilitation programme but did not feel able to attend.

National Clinical Guideline Centre. (2010) Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care. London: National Clinical Guideline Centre.

17

https://www.nice.org.uk/guidance/cg101

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Making Waves: RIPPLE 2 Spread Project Report

Figure 3: Self-Reported MRC Grade at Baseline – all sites

Table 5: Self-Reported MRC Grade at Baseline – per site MRC Grade

1

2

3

4

5

Missing

Total

Birmingham

0

3

1

1

0

-

5

Coventry

0

4

6

7

10

-

27

Dudley

2

5

6

2

4

1

20

Lincs

2

4

7

3

0

-

16

Northampton

3

14

17

6

3

-

43

Notts

0

1

2

3

1

-

7

Wolverhampton

1

6

9

3

7

1

27

Total (n)

8

37

48

25

25

2

145

Total (%)

6

26

33

17

17

1

100

Table 6: Previous attendance at pulmonary rehabilitation (PR) where MRC grade was higher than 3 (all sites) Self-Reported PR attendance

n (%)

Yes - in the past year

31 (31.6%)

Yes - but longer than a year ago

37 (37.8%)

No – didn’t feel able to attend

6 (6.1%)

No – I have not been referred to PR

20 (20.4%)

Don’t know

3 (3.1%)

Missing data

1 (1.0%)

Total

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Making Waves: RIPPLE 2 Spread Project Report

68 (69.4%) 29 (29.6%)

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Baseline Health Care Utilisation: A third of all Making Waves participants reported that they had been admitted into hospital in the past year because of their lung condition (see table 7). It is difficult to draw conclusions from sites with low numbers of participants (such as Birmingham and Nottinghamshire). Dudley, Northampton and Coventry reported similar admission rates but Wolverhampton record the highest admission rate with 56% of all participants reporting that had been admitted to hospital in the past 12 months.

Table 7: Have you been admitted into hospital because of problems related lungs in last 12 months?

MW Site

Yes

No

Total n

Birmingham

0

5

5

Coventry

7

20

27

Dudley

5

15

20

Lincs

4

12

16

Northampton

13

30

43

Notts

4

3

7

Wolverhampton

15

12

27

All sites n

48

97

145

All sites %

33%

67%

100

Baseline Health Status Data: Health Status was measured by the COPD Assessment Test (CAT), Warwick Edinburgh Well-Being Scale (WEMWBS), and the Hospital Anxiety and Depression Scale. Baseline scores can be found in Table 8. There were no statistically significant differences between the sites at baseline. The median CAT score for all Making Waves participants at baseline was 25 (IQR 2030) and this is higher than that recently reported in the National Pulmonary Rehabilitation Audit15 of 22 (IQR 17-28). There was a range of CAT scores across the sites with Birmingham and Dudley recording the lowest symptom burden and Coventry and Wolverhampton recording the highest.

Baseline WEMWBS scores recorded in the initial RIPPLE evaluation were lower at 42 compared to a mean baseline score of 45.7 for all Making Waves participants. This could be explained by delayed data collection as in the initial RIPPLE project. WEMWBS scores increased in the first 3 months of attendance but then levels out at 6 months. This higher baseline score in Making Waves participants may then reflect initial gains made in the period between date of first attendance and date of baseline data collection.

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Table 8: Baseline Health Status Metric (mean (SD)) MW Site

n

CAT score

WEMWBS

HADS Anxiety

HADS Depression

EQ5D VAS

Birmingham

5

18.2 (8.0)

50.4 (10.2)

6.6 (3.4)

6.2 (3.8)

56.00 (16.35)

Coventry

27

27.7 (6.0)

47.9 (10.4)

8.6 (4.5)

6.5 (2.7)

53.15 (22.88)

Dudley

20

24.8 (9.8)

45.0 (11.1)

8.2 (6.0)

8.0 (5.6)

60.32 (18.88)

Lincs

16

20.0 (6.8)

48.9 (12.5)

7.1 (5.7)

5.8 (3.5)

67.75 (22.56)

Northampton

43

22.4 (6.8)

44.8 (10.8)

9.1 (4.1)

7.6 (4.2)

59.91 (19.44)

Notts

7

27.1 (8.2)

41.1 (5.0)

9.0 (4.2)

9.3 (4.6)

47.14 (16.80)

Wolverhampton

27

27.6 (6.9)

43.6 (10.7)

9.3 (5.3)

7.4 (4.0)

49.63 (19.61)

All sites

145

24.5 (7.7)

45.7 (11.1)

8.6 (4.8)

7.2 (4.0)

56.88 (20.7)

Mean HADS scores for anxiety and depression are comparable with previous observation in a pulmonary rehabilitation population (Griffiths et al 200018). HADS scores of 8 and above are said to indicate â&#x20AC;&#x2DC;probableâ&#x20AC;&#x2122; anxiety and depression (Zigmond and Snaith 1983)8. It is therefore useful to understand the proportions of MW participants that scored 8 or higher for anxiety and/or depression. These data are detailed in tables 9 and 10 for anxiety and depression respectively.

Table 9: Participants who recorded HADS Anxiety scores greater than or equal to 8

MW Site

n

HADS Anxiety 8 or HADS Anxiety below 8 above (n (%)) (n (%))

Birmingham

5

2 (40%)

3 (60%)

-

Coventry

27

14 (52%)

13 (48%)

-

Dudley

20

8 (40%)

10 (60%)

2 (10%)

Lincs

16

7 (44%)

9 (56%)

-

Northampton

43

29 (67%)

14 (33%)

-

Notts

7

4 (57%)

3 (43%)

-

Wolverhampton

27

16 (59%)

11 (41%)

-

All sites

145

80 (55%)

63 (43.5%)

2 (1.5%)

Missing data

18 Griffiths, T.L., Burr, M.L., Campbell, I.A., Lewis-Jenkins, V., Mullins, J., Shiels, K., Turner-Lawlor, P.J., Payne, N., Newcombe, R.G., Lonescu, A.A. and Thomas, J., 2000. Results at 1 year of outpatient multidisciplinary pulmonary rehabilitation: a randomised controlled trial. The Lancet, 355(9201), pp.362-368.

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Table 10: Participants who recorded HADS Depression scores greater than or equal to 8

MW Site

n

HADS Depression below 8 (n (%))

HADS Depression 8 or above (n (%))

Missing data

Birmingham

5

2 (40%)

3 (60%)

-

Coventry

27

7 (26%)

20 (74%)

-

Dudley

20

11 (55%)

7 (35%)

2 (10%)

Lincs

16

5 (31%)

11 (69%)

-

Northampton

43

24 (56%)

19 (44%)

-

Notts

7

4 (57%)

3 (43%)

-

Wolverhampton

27

12 (44%)

15 (56%)

-

Total

145

65 (45%)

78 (53.5)

2 (1.5%)

Baseline data for the EQ5D health questions for all sites is summarised in table 11. This confirms that significant proportions of MW participants reported at least slight problems in all 5 questions.

66% of all participants reported at least slight problems with anxiety /depression. 27% of participants reporting moderate, severe or extreme problems on this EQ5D item. Almost 90% of participants report at least some problems with mobility.

Table 11: Number and proportions (in parenthesis) reporting levels within EQ-5D components at baseline EQ -5D components

Mobility

Self-Care

Usual Activities

Pain/ Discomfort

Anxiety/ Depression

1 (no problems)

15 (10.4)

57 (39.6)

15 (10.4)

29 (20.2)

49 (34.0)

2 (slight problems)

28 (19.4)

39 (27.1)

32 (22.2)

41 (28.5)

56 (38.9)

3 (moderate problems)

57 (40.0)

30 (20.8)

58 (40.3)

52 (36.1)

27 (18.8)

4 (severe problems)

42 (29.2)

16 (11.1)

29 (20.1)

16 (11.1)

8 (5.6)

5 (unable to do/ extreme)

2 (1.4)

2 (1.5)

10 (6.9)

5 (3.5)

4 (2.8)

Total

144

144

144

143

144

Number reporting some problems

129 (89.6)

87 (60.4)

129 (89.6)

114 (79.7)

95 (66.0)

Number reporting Serious Problem

46 (31.9)

18 (12.5)

39 (27.1)

21 (14.7)

12 (8.3)

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Making Waves: RIPPLE 2 Spread Project Report

Baseline Patient Activation Measure (PAM) Scores and Levels PAM activation level 1 indicates the lowest level of patient activation (indicated by scores â&#x2030;¤ 47 points) and level four the highest level of activation (indicated by scores â&#x2030;Ľ 67.1 points). PAM levels were calculated and the mean scores for all sites is presented in table 12 below. The Lincolnshire Making Waves site recorded the highest mean activation scores and the groups at Nottingham and Northampton recorded the lowest.

The number of participants in each PAM activation level is presented in figure 4 for each Making Waves site. 22.1% of all Making Waves participants were scored at levels one, 27.6% at level two, 35.9% at level three and 11.0 % at level four at baseline. This distribution of PAM activation levels is comparable to a study of 290 participants with COPD by Korpershoek et al (2016)19.

Table 12: Baseline Patient Activation Measure scores Baseline PAM Score MW Site

n

Mean score

SD

Birmingham

5

56.4

4.1

Coventry

27

56.4

8.8

Dudley

20

59.5

14.9

Lincs

16

62.6

14.7

Northampton

43

53.5

9.4

Notts

7

52.0

5.5

Wolverhampton

27

55.7

11.5

All sites

145

56.4

11.2

Figure 4: Baseline PAM Levels per site

19 Korpershoek, Y.J., Bos-Touwen, I.D., De Man-Van Ginkel, J.M., Lammers, J.W., Schuurmans, M.J. and Trappenburg, J.C.A., 2016. Determinants of activation for self-management in patients with COPD. International journal of chronic obstructive pulmonary disease, 11, p.1757.

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CHANGE IN HEALTH STATUS MEASURES:

Mean changes for each measure were compared from baseline to 3 months using a paired studentâ&#x20AC;&#x2122;s t test and also from baseline, 3 months and 6 months with analysis of variance (ANOVA). Complete data sets from baseline to 3 month time points were obtained from 112 participants and 67 participants had complete data sets across all three time points. Changes across all three time points are not presented at a site level because of very small numbers of complete data sets.

A trend for improvement in scores were seen in all measures but only changes in CAT scores reached statistical significance (paired t test p=0.03) (see table 13). Mean changes for each item of the 8 items on the CAT were analysed from baseline to 3 month time points. These are shown in figure 5. This revealed that question 6 that asked about the level of confidence that participants feel when they leave the house, demonstrated the largest improvement. This improvement was statistically significant (p<0.05).

Table 13: Changes in Health Status from baseline to 3 months Metric

Mean (SD) T2

Mean change (95% confidence interval)

p value

24.57 (7.52)

23.37 (8.19)

-1.21 (-0.14 to -2.27)

0.03

112

46.53 (11.30)

46.62 (10.69)

0.09 (1.77 to -1.60)

0.92

HADS anxiety

111

8.38 (4.68)

8.20 (5.24)

-0.18 (0.50 to -0.86)

0.60

HADS depression

111

7.25 (4.05)

7.11 (4.14) -0.14 (0.38 to -0.67)

0.59

EQ5D VAS

112

55.88 (20.36)

56.89 (21.30)

0.59

n

T1

CAT Score

112

WEMWBS

1.01 (4.68 to-2.66)

Figure 5: Changes in individual items for CAT score (all sites) from Baseline to 3 months

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Making Waves: RIPPLE 2 Spread Project Report

We conducted repeated measure analysis of variance ANOVA test to compare the difference in health condition variables across the 3 time periods. The repeated ANOVA is appropriate for the analysis, as the data for 67 participants observed over 3 time periods correspond to repeated observation sample. We have reported the means over 3 periods, and p values in Table 14. The results for health status and CATS are statistically significantly different across time periods (p value <0.05).

Table 14: Changes in health status at baseline, 3 months and 6 months Mean Baseline

Mean 3 months

Mean 6 months

P Value

EQ5D VAS

55.4

60.6

61.1

0.022

CATS

24.6

22.6

23.9

0.026

WEMWBS

46.8

48.0

48.0

0.370

HADS Anxiety

8.3

8.0

7.65

0.398

HADS Depression

7.0

6.6

6.4

0.313

CHANGES IN PATIENT ACTIVITATION LEVELS AND ABILITY TO SELF MANAGE: Patient Activation Measure A total of 65 participants across all MW sites had complete data sets at baseline, 3 months and 6 months.) Mean PAM scores increased by 2.1 points for these participants during the evaluation period. The mean scores (SD) were 57.2 (11.4) at baseline, 58.5 (13.3) at 3 months and 59.3 (13.8) at 6 months.

Figure 6 sets out the change in PAM levels across the evaluation period. There was a decrease in the number of participants scored at the lower PAM levels (1 and 2) at the six month period and an increase in the number of participants moving to the higher PAM levels (3 and 4).

Figure 6: Change in PAM levels (n=65)

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Further examination of changes in individual participants revealed that 16.9% decreased their PAM level at six months, 47.7% had no change to their PAM level and 35.4% of participants actually increased by at least one level (see figure 7).

Long Term Conditions 6 Questionnaire The results for the Long Term Conditions 6 Questionnaire are presented below for the 68 participants from all sites that completed data at all three time points.

The majority of participants were positive about the care and support they had received to help them to manage their condition over the past 12 months and the distribution of responses was similar for all items over the three time points.

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Making Waves: RIPPLE 2 Spread Project Report

47

SUMMARY OF PARTICIPANT EVALUATION FINDINGS - 38% of participants reported that they lived alone - 11% of participants reported that they still smoked - 68% of participants had an MRC breathlessness score of 3 or higher - 33% of Making Waves participants reported that they had not

attended a pulmonary rehabilitation programme at any point prior to attending the Making Waves clinic

- Baseline Hospital Anxiety and Depression scores indicated that

44% of Making Waves participants may be anxious and 54% may be depressed

- Participants had lower levels of health status and symptom

burden at baseline, as measured by the COPD Assessment Test (CAT), when compared to patients who attend pulmonary rehabilitation programmes

- Statistically significant improvements were noted after 3 months

in CAT scores which indicates an observed reduction in symptom burden over this time period

- Scores for the EQ5D and CAT improved significantly from baseline

to 6 months in the 67 participants with complete datasets suggesting that there was an improvement in health status and symptom burden for these participants over the complete evaluation period

- The largest improvement in CAT scores at 3 months was noted in

the item that recorded participantsâ&#x20AC;&#x2122; level of confidence to leave the house which indicates that the Making Waves clinics may be effective at reducing social isolation

- 50% of participants had low levels of activation to self-manage

their COPD as measured by the Patient Activation Measure

- 35% of participants increased their levels of activation to self-

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manage (as measure by PAM levels) by the end of the 6 month evaluation period

Making Waves: RIPPLE 2 Spread Project Report

HEALTHCARE UTILISATION EVALUATION: Costing for the sites, “Making Waves” programme The purpose of the costing exercise was to measure the resource-use associated with the provision with the “Making Wave” programme at the sites. We have also addressed the potential cost saving to the NHS system due to the Making Waves intervention.

The point of view adopted in the first part is the cost of provision experienced by the sites. Therefore, site expenses are treated as final cost measures and any imputation on the bases of national price weights is avoided. These costs will enable decisions to be made about the resources requirements and pricing of the future roll-out of the scheme. Five making Waves sites report site level costs and these operational expenses are presented in Figure 14, for the cost analysis the figures are annualised.

Figure 14: Annual cost of running the program per site The average cost of five reporting sites stands at £26,088.

The approximate portion for fixed cost, rental cost and variable cost are also analysed for the five sites. The rental cost appears to be the largest component for running the sites. Staff and services at sites also cost more than a quarter of expenses. The approximate composition of expenses is presented in the Figure 15. The overall data provided by sites for the cost figures were not detailed enough. Therefore, any lessons drawn should be considered cautiously.

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Figure 15: Site level expenses per category

Potential Savings to the healthcare systems and NHS: Northampton Case Study The Northamptonshire site (Breathing Space) shared their local evaluation of the potential health care utilisation savings that Making Waves clinic attendance may have. The analysis is based on the 41 persons who attended more than three times between November 2016 and February 2017 at one site and they were able to compare this cohort with a matched cohort of patients who had not attended the clinics. The impact from avoiding increase in unplanned hospital respiratory condition admissions and avoiding A&E attendances purely for respiratory related issues results in potential saving to NHS. Combined savings from not using national healthcare resources amount to in six-month period to ÂŁ10,480 or an annual figure of ÂŁ20,960.

Potentially similar savings occurred at other sites as well. This can be estimated based on the NHS resource utilization by participants.

Figure 16 below shows the number of visits to A & E departments and to GPs by the participants who provided the information at baseline, 3 months and 6 months data collection time points over the project. A declining trend in the number of visits was reported.

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Making Waves: RIPPLE 2 Spread Project Report

Figure 16: Number of visits to A&E and GP by MW participants

In addition to an absolute trend in the resources utilization the relative use of services is also shown in Figure 17. This indicates a small (~1%) decrease in the percentage of participants who accessed Accident and Emergency departments over the six months with a small increase in the number of participants visiting their GP. Figure 17: The proportion (%) of participants using the health resources

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CONCLUSIONS AND RECOMMENDATIONS This evaluation demonstrates that the Making Waves clinics provided a highly valued intervention for people with COPD. Participants recognised the benefit of peer support and also found the clinical support was accessible and beneficial. The profile of Making Waves participants was different to that seen in secondary care or pulmonary rehabilitation populations. The clinics were attended by a population that is has lower health and psychological status than people who access pulmonary rehabilitation programmes and yet they have a lower rate of people who currently smoke compared to the COPD population described in secondary care. This indicates that the Making Waves clinics may be providing a valued intervention for a population not currently seen in other evidence based interventions for people who have COPD. In addition there were strong indications that the Making Waves clinics may improve participantsâ&#x20AC;&#x2122; levels of activation to self-manage their COPD. There was also anecdotal evidence that the Making Waves clinics provided a supported environment where end of life issues could be addressed.

Recommendation: Health economies should explore the potential of the Making Waves clinic model to help to reduce social isolation, improve levels of well-being for people who have COPD. A substantial proportion of participants had not previously attended a pulmonary rehabilitation programme. This suggests that Making Waves clinics may be a useful resource to help to improve uptake to this intervention and further consideration should be given as to how Making Waves clinics can maximise this potential. All clinics engaged in some type of physical exercise as a scheduled activity and so could be more effectively used to help maintain FLU N VACCINATIO benefits in the people that have already attended pulmonary rehabilitation.

SMOKING CESSATION

52

PULMONARY REHAB

Recommendation: The potential for Making Waves clinics to help to improve uptake and adherence to existing pulmonary rehabilitation programmes should be explored and maximised.

Making Waves: RIPPLE 2 Spread Project Report

There were observed improvements in health status over the evaluation period Making Waves. These findings support the conclusion that Making Waves clinics appear to help to reduce social isolation. Further research is required to confirm these findings. In particular it is recommended that this be completed at an individual clinic level where the intervention can be more effectively described and a pre-post design effectively employed. This approach would also facilitate the collection of clinical data at a local level which was not feasible in this multi-site evaluation. Evaluation of multiple sites, across several localities, is challenging and future studies should ensure that evaluation is more closely aligned with the launch of clinics to assess the ongoing impact of individual clinics as new participants join.

Recommendation: Participant level evaluation of Making Waves clinics are required to further establish the clinical impact of the intervention.

There is preliminary but encouraging evidence that suggests that the clinics may result in a reduction in health care utilisation and potential savings were described by at least one site. However, this was not confirmed by all sites and access to local health utilisation data is required to establish this. Third sector partners do not have access to this data and clinical teams and commissioners are essential to this process.

Recommendation: Each site should continue to engage with clinical teams and local commissioners to evaluate the economic impact of the clinics upon local health care resource utilisation.

The Making Waves clinics involve multisystem working and effective collaboration. Spreading the innovation has been complex for all partners and there are often barriers to effective communication. Most importantly continued engagement of commissioners and clinical teams are crucial for their ongoing development and success. Clinics that were not able to gain this level of regular clinical involvement or support from commissioners reported difficulties in attracting referrals and securing future funding.

Recommendation: Identified, continued support from local â&#x20AC;&#x2DC;clinical championsâ&#x20AC;&#x2122;, adherence to co-creation principles, and effective partnership working with the Third sector are key factors in the success of Making Waves clinics.

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Making Waves: RIPPLE 2 Spread Project Report