Barriers and Enablers in Accessing Eye Care Services in West Belfast

The barriers and enablers that affect access to primary and secondary eye care services — West Belfast site report

A report to RNIB by Shared Intelligence

RNIB Community Engagement Projects

Author(s):

Donna-Louise Hurrell and Sarah Donohoe

Final Report

January 2012

Document reference:

RNIB/CEP/IR/West Belfast/01

Published by:

RNIB

105 Judd Street

London, WC1H 9NE

Sensitivity:

Version 1.1

Internal and full public access

Copyright:

RNIB 2011

Commissioning:

RNIB, Evidence and Service Impact

Citation guidance:

Hurrell, D-L and Donohoe, S (2012) The barriers and enablers that affect access to primary and secondary eye care services — West Belfast site report. RNIB report: RNIB/CEP/IR/West Belfast/01, 2012.

Affiliations:

Shared Intelligence

Correspondence:

Contact: Carol Hayden, Research Director, Shared Intelligence

Email:

Acknowledgements:

Shared Intelligence would like to thank the many individuals for their time and input into this research. Our thanks also go to members of the Advisory Groups, RNIB staff and other professionals at the site for their help and support especially with providing local contacts, setting up fieldwork and arranging workshops. Thanks as well to Shaun Leamon and Helen Lee from RNIB for the information and support they have provided.

The analysis and views expressed in this report are those of the authors and should not be interpreted as the views of RNIB

INSIGHT RESEARCH - WEST BELFAST

Contents

Executive Summary......

1Introduction, aims and context

1.1Introduction

1.2Aims

1.3Local collaboration and leadership

1.4The population in Upper Springfield, Whiterock, Clonard and Falls and glaucoma

1.5This report

2Methodology

2.1Focus groups with community members

2.2Interviews with service users

2.3Interviews with service providers and managers

2.4Challenges and limitations

2.5Analysis

2.6Ethics

2.7Quotes in this report

3Findings

3.1Community views and experiences

3.2Secondary care patients’ experiences and views

3.3Views on improvement opportunities

3.4Service providers’ perspectives

3.5Service provider views on improvement opportunities

4Discussion of findings

4.1Barriers and enablers to accessing primary care

4.2Barriers and enablers to accessing secondary care

4.3Service capability to respond to inequalities

5Recommendations

6Site intervention summary

6.1Introduction

6.2How the intervention strategy was developed

6.3The West Belfast theory of change

7Recommended interventions

7.1Intervention 1: Community based eye health campaign

7.2Intervention 2: Community glaucoma support programme

8Next steps

9Concluding remarks

10References

SHARED INTELLIGENCE

INSIGHT RESEARCH - WEST BELFAST

Executive Summary

Introduction

The Eye Health Community Engagement Project investigated eye care services in West Belfast with specific reference to primary care and glaucoma treatment amongst the communities in Upper Springfield, Whiterock, Clonard and Falls, aged 40 to 65 years. The study aimed to understand people's experiences and perceptions of eye care services, and propose interventions to reduce the barriers and support enablers to increase the uptake of eye care services among the West Belfast Community.

The study was commissioned by RNIB as a part of the current five-year strategy, priority one of which aims to bring about a reduction in the rates of avoidable sight loss among people who are most at risk. The West Belfast site was selected by RNIB in response to available epidemiology indicating the increased risk of glaucoma and later presentation for treatment among socio-economically deprived groups.

The study has built a better understanding of the reasons behind inequalities in the uptake of primary prevention services and secondary care for glaucoma in the Upper Springfield, Whiterock, Clonard and Falls communities. As a result of the findings, local partners in West Belfast will be able to assess possible intervention responses and prepare a plan for action to improve the patient pathway and service system.

Aims

The aims of the study were to:

• Identify the barriers and enablers to accessing primary eye care services among the community in Upper Springfield, Whiterock, Clonard and Falls;

• Identify the barriers and enablers to accessing secondary eye care services among the community in Upper Springfield, Whiterock, Clonard and Falls;

• Identify the barriers and enablers among secondary care patients with glaucoma, and in the wider community, to concordance with treatment;

• Design and develop intervention strategies to increase the uptake of eye care services among people most at risk of developing avoidable sight loss.

Method

The approach taken was based on collaboration and engagement with clinicians, eye health professionals, local RNIB staff, public health stakeholders from the statutory and voluntary sectors, and with the community itself.

The study was comprised of the following data collection methods:

• Focus groups with residents of the Upper Springfield, Whiterock, Clonard and Falls wards — the majority of participants were aged between 40 and 65 years old (March-June 2011) — to explore attitudes to eye health, explore motivations for and barriers to eye tests, and suggestions for improving access to eye care services.

• Semi-structured interviews with people from West Belfast who have, or are at risk of having, glaucoma (May-July 2011) — to identify motivations for and barriers to concordance with secondary care and how eye health services and pathways could be improved.

• Semi-structured interviews were conducted with service providers and managers in eye health primary and secondary care (March-June 2011) – to gather experiences of take up of and access to primary and secondary eye care services from the target group and views about how to improve eye health pathways and access.

After insight was gathered and analysed, findings were presented to local stakeholders who then worked, in a series of workshops and meetings, to develop a theory of change and an action plan to respond to findings. As a result three interventions were proposed including: a public health campaign to increase the number of people attending for an eye test; providing sight tests in community settings to remove the retail dimension; and developing and delivering a support programme for people diagnosed with glaucoma and their families. These are to be taken forward and refined by the newly formed Community Engagement Project Advisory Group.

Findings

The findings provide a rich source for analysis and interpretation of the barriers and enablers that are influencing the uptake and access to eye care services among the community in Upper Springfield, Whiterock, Falls and Clonard. The key findings with regard to accessing primary care services are summarised below.

Primary care: motivations and barriers

Community awareness of eye health

• The research findings suggest that awareness of eye health and eye health conditions is limited among the target communities. Community members do not understand eye health beyond “eye sight”.

• As such there was also limited understanding about the risk factors related to eye health and/or any preventative behaviour that individuals could take to protect and promote eye health. Focus group discussions showed that, in part, participants attributed this limited understanding to a lack of available information about eye health.

• Community members also expressed the view that eye health is not deemed a high priority by policy makers or commissioners and that this is likely to continue given pressures on public resources.

• Yet there is a desire among community members to know more about sight loss and eye health. The belief is that there have been missed opportunities to date as many service providers have failed to understand the needs of the community and thus plan service delivery in response - this is echoed by a number of service providers. It is clear that there are many existing health projects and activities within the communities that could be used to promote eye health and eye health messages.

Symptom-led demand for prevention and care

• Preventive action in relation to eye health is understood almost exclusively through the prism of eye-sight and without reference to eye health or eye conditions. In part this is due to people taking a very much take a symptom led approach eye health - seeking assistance when they have a problem.

• Eye-tests are generally not recognised as health checks and individuals do not go (in the first instance) unless there are symptoms which they deem serious enough to take the time to arrange and attend an eye test.

• These results point to an apparent failure in the system to adequately address the prevention needs of this high risk community. Service providers representing a variety of professions all pointed to the existence of low community awareness and a symptom led demand for treatment and the need to address this. So while the problem is reasonably well-known, it appears that action has not yet been taken to resolve it effectively. The reasons for these are probably complex but may include a lack of knowledge from services about how to tackle the problem.

Barriers and enablers to tests and frequency of eye examinations

• Factors that influence people’s decision to have a test or not appear the same i.e. they will primarily seek response to a problem such as deterioration of sight, headaches etc. Following initial seeking of treatment key enablers for re-testing appear to be when reminders are received and/or there is a deterioration of vision.

• Experience of eye examinations is also crucial to the frequency of re-testing. The majority of individuals consulted feel that a positive experience encourages repeat attendance. Factors creating a positive experience are stated as: being met with a positive attitude from the clinician; and being given full information and explanation of the process.

• A further clear finding is that when the optometry service is clearly visible and involved in the community, attendance is encouraged. Attendance at optometrists from a young age encourages habitual attendance.

• The most dominant barrier identified to testing via the study was around the perceived costs of visiting the optometrist. The expectation of cost – for purchasing glasses as much as for the test - when attending for an eye test clearly results in individuals making the decision either not to attend at all and/or not attending as regularly as they should, even in circumstances when they know they have problems with eye sight. Linked to this there is a lack of awareness or understanding around assistance with costs associated with eye health and benefit entitlement.

Secondary care: motivations and barriers

Organisation and administration of Secondary Care Services

• The secondary treatment system for glaucoma in West Belfast is viewed as less than ideal. Both patients and service providers recognise a number of limitations in its capacity to respond fully to patient needs which can result in a less than ideal experience.

• The way in which referrals are managed is considered by many to be cumbersome and inefficient; optometrists having to refer to GPs, who then refer to secondary care, are considered to add an additional and unnecessary step. Many feel that the referral process would work better if optometrists could refer direct to secondary care.

• Some of the ways in which appointments are managed and administered present difficulties for many patients. Waiting times can be long; patients are often very unclear how long they will have to wait between appointments.

• There is a lack of follow up around why people do not attend for appointments. Tough rules on non-attendance may have an equalities impact with individuals being discharged and put at risk unnecessarily.

• Lack of explanation around testing, referrals and treatment processes/outcomes varies; generally there is a desire for more information and explanation to be given.

Limited service capability to respond to inequalities

• It is evident that enhanced and integrated social support (particularly that delivered in a community setting) would enable individuals to feel better assisted in the management of chronic/multiple conditions. Service providers point to unrealised opportunities for greater social support and reinforcement of awareness and treatment messages through GP clinics and better use of community optometry and pharmacy services.

• Service providers recognise that a number of the issues and challenges raised via the study will be potentially resolved via the new glaucoma service and referral process, i.e. more accurate testing and therefore more timely and appropriate referrals from primary care.

• Nevertheless it is recognised that there are still opportunities that could be exploited to ensure this new service and process is successful, including through more developed and effective partnership working.

• It is also recognised that more needs to be done to consciously engage with, involve and get to know the community to ensure that the service as it is rolled out is responsive to their needs.

• There is a need to agree a common set of key messages that will improve communication around eye health both at a preventative level and in relation to the eye care pathway.

• There is also a need to improve support systems such as the management and administration of patient information and appointment systems and to improve the sharing of and to use improved data recording to improve service design and delivery.

Recommendations based on the study conclusions

The following overall recommendations were developed to address the barriers experienced by the working class community in West Belfast as identified through an analysis of the key findings of the study. They have been used to stimulate discussion on the specific proposed implementation strategy that has been subsequently developed with site partners and remain ‘on the table’ for future consideration.

• Develop a targeted public health awareness raising campaign around eye health and the importance of attending regular site tests. Develop and deliver this programme in partnership with the community starting at early years.

• Engage key health professionals to work with the community to promote eye health messages and consult on service design and delivery.

• Address the cost barrier to sight tests by exploring options to separate the testing dimension from purchase of prescription; improve advice on eye health benefits and entitlements and explore delivery of sight tests in community health setting rather than retail environment.

• Explore the management and administration of the secondary care eye clinic appointment and waiting system in light of patient experience. In particular look to improve communication of waiting times; review procedures relating to non-attendance; and consider possible changes to improve attendance if necessary.

• Develop improved communication around the secondary care clinic, (e.g. explanation of the referral process, what is likely to happen during appointments etc) and the management and treatment of glaucoma.

• Address confusion around the different elements of the pathway via awareness raising and improved information/communication efforts.

• Investigate enhancement and creation of patient support programmes for glaucoma sufferers and their families (delivered outside the clinical setting) in order to support self-management of condition. Build on existing successful supports e.g. ECLO, support groups, community health projects.

• Involve other key professionals (GPs, community optometrists, pharmacists) in promotion and management of eye health.

• Develop partnership working and links between primary and secondary care in order to support improvements to the eye care pathway (i.e. between GPs and optometry, and optometry and ophthalmology).

• Explore improvements to data systems to support better recording and sharing of patient records to encourage delivery of integrated, outcome focused eye health pathway.

Site intervention strategy

The findings from the investigation of barriers to the use of services provided the basis for a collaborative process with West Belfast site partners through which intervention strategies to increase the uptake of eye care services have been designed and recommended. This process included a site workshop and discussions with local and national RNIB partners which responded to the findings and also considered the unique local circumstances and national context that would inform the future sustainability of selected action. The unfiltered range of potential interventions considered is reflected in the report recommendations (provided above). A number of these recommendations were also discussed and developed during the workshops and their detail is captured in the appendix two to the report (workshop outcomes).

To illustrate how the proposed intervention strategies respond to the study findings and are able to achieve the outcomes identified a ‘theory of change’ has been prepared. The diagram identifies the causal pathway from the site context and our study findings to the overall programme goals and shows the types of actions that will be required to meet these goals. This theory of change forms the basis for future assessments of appropriate interventions to reduce avoidable sight loss in the Upper Springfield, Whiterock, Clonard and Falls communities.

In response to the recommendations from Shared Intelligence, three interventions were proposed, to be led by the new Community Engagement Project Advisory Group:

Intervention 1

A community based public health campaign to increase awareness and uptake of primary eye care services

Intervention 2

Community support programme to aid concordance with glaucoma treatment and care

Next steps