eye 2 eye campaign in Birmingham
Michael Loftus - Project Lead - SeeAbility’s eye 2 eye campaign Development Officer - Birmingham
SeeAbility’s national eye 2 eye campaign is growing and developing with the establishment of the Look Up information service which targets people with learning disabilities, parents, family carers and health and social care staff as well as other professionals. Our website www.lookupinfo.org aims to produce and disseminate information and factsheets and also provides telephone advice.
eye 2 eye and Look Up are working to create a drive for nationwide improvements in eye care and hearing care for people with learning disabilities, and to ensure that people get the best possible help when a visual impairment and/or hearing impairment is identified. The national eye 2 eye campaign continues to deliver its work through local campaigns in Bristol, Sheffield, London, Sussex and here in Birmingham.
This article looks at how the Birmingham campaign obtained views and opinions from people with learning disabilities, their family carers and professionals in the field of eye care in the drive to enable the campaign to address areas of local need.
We started from the point that SeeAbility believes that each person has the same human value and rights as anyone else and the right to services with community inclusion. We believe that having the best possible eye care and hearing care considerably helps people to participate in society and have a better quality of life.
The following information formed the basis of driving the campaign forward within Birmingham, with the following objectives being paramount -
- To establish the project and communicate its existence to relevant individuals and agencies.
- To undertake a mapping exercise to identify need within Birmingham.
- To communicate the results of the mapping exercise and make recommendations and provide solutions where possible and appropriate.
- To raise awareness of the importance of eye tests and good eye care amongst people who have learning disabilities.
- To raise awareness amongst supporters of people with a learning disability.
- To raise awareness of the needs of people with learning disabilities amongst a wide range of eye care providers.
- To form links and collaborate with other organisations involved with people with sensory impairments in the community.
- To raise awareness amongst relevant health and social care staff.
The work in Birmingham began with numerous presentations to different audiences about the eye 2 eye campaign, its aims and objectives and the importance of developing quality services focused on social inclusion. Information about the campaign was sent to service users, carers, families, home managers, multi-disciplinary teams, work and college placements and training establishments, and to the Birmingham Local Optical Committee which is a forum for optometrists and opticians.
The mapping exercise followed, gathering information from service users, support workers, home managers, carers, and optometrists within Birmingham. This gave us crucial information about the quality of eye care in the City, and some of the difficulties people faced when they tried to gain access to good eye care. Confidentiality has been maintained throughout the article.
Information provided from those who use services
The opinions of service users were sought in order to highlight both positive and negative experiences of eye tests and people’s access to other eye care services. We needed to identify relevant factors which can promote quality eye tests and eye care for people with learning disabilities.
The service user interviews were completed in a number of establishments within the City of Birmingham that provide work, training or education to people with learning disabilities and, in some cases, to people with serious mental health problems.
We considered that the survey would highlight aspects of eye tests in high street optometry practices and treatment in hospitals from the perspective of those who use the services.
Secondly, the survey would identify, from the group interviewed, their experiences of wearing prescribed glasses.
Thirdly, the interviews would identify the extent to which people are not obtaining eye tests or other eye care services and the reasons why. The exercise would also identify if service users enjoyed their experiences or did not enjoy the services experienced.
The exercise also wanted to discover if service users were aware of Health Action Plans, and whether individuals possessed a Health Action Plan. Health Action Plans were outlined in the Valuing People white paper for England. ‘A Health Action Plan details the actions needed to maintain and improve the health of an individual and any help needed to accomplish this.’
Limitations of the mapping exercise
Limitations of the exercise would include the fact that service users who could not comprehend the questions would be excluded. This ruled out people with a severe learning disability.
Service users interviewed volunteered for interview and, therefore, valuable information may have been lost because many service users chose not to be interviewed.
Interviews were completed in day centres, training/work establishments and colleges and so were completed with people who are group engaged in some form of community activity. We did not attempt to obtain the opinions of people with learning disabilities who do not use services.
In order to address the needs and experiences of people with severe learning disabilities, individuals were supported to access eye care services. This was to help identify key issues that can promote good quality eye care. Teams working within the different areas of the City supported people with severe learning disabilities through eye tests.
Information from service users
The people involved were interviewed on a one-to-one basis at their work, training or educational placement. The interviews followed a semi-structured interview format, enabling the collection of quantitative and qualitative data. This would provide us with information about people’s experience of an eye test, and help us devise ways to tackle gaps in the knowledge and skills of service users, supporters and eye care professionals within the City.
One hundred and eighty-one service users (181) agreed to be interviewed. However, we were unable to use the information from 45 people. This was because 39 individuals could not or did not consent to sharing information while six appeared not to have a learning disability. The total number of service users interviewed, therefore, who could agree to information for this report was one hundred and thirty-six (136). We accept that the information gained is only relevant for the population interviewed.
Of those interviewed, 86 were male (63.86%) while 50 (36.14%) were female. Of those interviewed, the ethnic origins described by the individuals themselves were as follows:
British, UK or English
Number of individuals = 99
72.8%
Pakistani
Number of individuals = 12
8.8%
Indian
Number of individuals = 8
5.9%
Afro-Caribbean
Number of individuals =7
5.2%
Irish
Number of individuals = 5
3.7%
African
Number of individuals = 3
2.2%
Other
Number of individuals = 1
0.7%
Other European
Number of individuals = 1
0.7%
Accommodation of service users
We asked people where they lived.
77 people (56.6% of the sample) reported living with their family
49 people (36% of the sample) lived in residential care
7 people (5.1% of the sample) lived on their own with support workers visiting to provide limited support
3 people (2.2% of the sample) reported living in warden controlled flats or hostels.
Age of service users
The age ranges of those interviewed were as follows:
Age 18 - 30
Number of individuals = 34
25%
Age 31 - 40
Number of individuals = 36
26.5%
Age 41 - 50
Number of individuals = 25
18.4%
Age 51 - 60
Number of individuals = 30
22.1%
Age 61 - 70
Number of individuals = 10
7.3%
Age70+
Number of individuals = 1
0.7%
Support during an eye test
Of those interviewed, 104 people (76.5% of the sample) reported that they required a carer or staff member to support and accompany them to medical appointments, such as an optician or hospital service.
However, 32 people (23.5% of the sample) noted that they do not need support.
Analysis of findings
The number of individuals who reported having previously had an eye test was 102 (75% of the sample), while 34 people (25%) said they had never had an eye test.
Of the 34 individuals (25% of the sample) who had never had an eye test, 26 (19.1%) did not know where to go to receive an eye test. Five people (3.7%) disliked/feared appointments in general, while 17 (12.5%) felt that their sight was not a problem and so did not need a test.
Looking at the 102, as a 100% total of people who had an eye test, produced the following results:
- 34 individuals (33.3%) had an eye test in the last twelve months
- 17 individuals (16.6%) had an eye test within the last one or two years
- 14 individuals (13.7%) had an eye test more than two years ago
- 37 individuals (36.3%) were not sure how long it had been since they last had their eyes tested.
Paying for eye test
Most adults with learning disabilities have a free eye test and a voucher towards the cost of glasses. Some people needed help to claim their entitlements.
36 people (35.3%) reported that they paid for eye tests and/or glasses, with prices varying from £5 up to £120.
66 people (64.7%) reported that they received free eye tests, and glasses (for those who needed them).
Glasses
82 people (80.4%) had been prescribed glasses but 18 of them (17.6% of the sample) reported that they do not wear their glasses.
One person (0.98%) refused to wear her glasses because she would fall over when wearing them.
2 people (1.96%) reported that they break their glasses when upset.
5 people (4.9%) said that they do not need the glasses.
10 people (9.8%) did not identify reasons why glasses are not worn.
Visits to the optometrist
Positively 87 people (85.3%) reported that they enjoyed visiting optometry services, with 11 individuals (10.8%) indifferent to the experience.
Frequent positive comments include
- staff were nice to talk to
- people were friendly
- we could pick our own glasses.
However 4 people (3.9%) reported that they disliked the experience.
Reasons for not liking the experience of going for an eye test were
- dislike of eye drops,
- a service user reports a dislike of the optometrist’s face being so close to his face during examination,
- dislike of the dark room,
- One service user (0.98% of the sample) was not sure why he disliked the experience.
Of those who received vision tests 12 people (11.8%) reported that they are seen regularly at a Birmingham Hospital because of vision problems. Of the 136 individuals interviewed, 15 people (11%) reported that they had heard of Health Action Plans, while 11 individuals (8.1%) reported they have a Health Action Plan.
Optometry Responses
One hundred and three questionnaires were sent out to optometrists within the City of Birmingham. The aim of this exercise was to elicit the views and experiences of optometrists providing services for people with learning disabilities. The response from the exercise resulted in 27 questionnaires being returned. The responses produced the following information which is only relevant to the services involved.
Seven optometrists reported seeing between 1 - 10 service users with a learning disability each year
Six optometrists saw between 11 and 20 per year
Two optometrists saw between 21 and 30 per year
Five optometrists saw 30+ service users each year.
Seven optometrists provided no figures, with one noting a lack of awareness of learning disability and so was not sure which group of service users has a learning disability.
When asked to self-rate their service performance related to eye tests for people with a learning disability the following results were noted.
Number of optometrists = 7
Rate of service performance = Very good
Number of optometrists = 15
Rate of service performance = Good
Number of optometrists = 1
Rate of service performance = Poor
Number of optometrists = 4
Rate of service performance = Not sure or no response
The optometrists’ measurement between very good, good and poor is obviously subjective.
Difficulties with eye tests
When asked if tests were difficult to perform for people with a learning disability, 16 optometrists reported that the tests could be difficult to perform. The reasons given were:
- Service users not concentrating on tests.
- Service users not co-operating with tests.
- Poor communication.
- Physical problems or postural problems making tests difficult.
- Service users frightened of the experience of the eye test.
- Lack of appropriate tests/equipment.
- Optometrists not knowing how to approach the service user.
- Staff/supporters accompanying service users having a lack of knowledge about the service user (i.e. no background information or medication information, no awareness of service user’s visual needs).
- Problems with stinging eye drops.
- Not enough time to complete a test.
- No training or awareness of learning disability.
Six optometry practices stated that they do provide low vision services. (Low vision is when a person has difficulty seeing even when they are wearing the right glasses or contact lenses. Low vision services help people to use their existing vision more effectively.)
Three optometrists said that they or their staff have had training in learning disability awareness, with two reporting the training at a pre-registration stage (i.e. before they qualified as optometrists).
Twenty-five optometrists reported that they would like further information on how to work effectively with people with a learning disability.
Twenty optometrists considered that eye care and low vision services could be improved for people with a learning disability. They suggested the following:
- Training for all staff within practices.
- Training on how to deliver tailored eye examinations.
- A dedicated centre for low vision services for people with learning disabilities.
- More community based services, including low vision, ophthalmology (eye doctors) and so on.
- Greater awareness of low vision services and how to access them.
- Improved services to address language barriers.
- Extra tests, i.e. pictures. (Specific tests).
- Sharing of available equipment.
- Staff assisting service users having knowledge of the service user.
- Supporters and service users to be aware of the need for regular health checks.
- Funding for both eye care and specialist spectacles to be addressed.
- More funding for eye tests.
- Improving access for people with a physical disability / postural problems.
- Annual eye examination for all children with learning disabilities at special schools.
- All parents should be aware of optometry services and eye care services in the local areas.
- Recalls should be responded to. Families, carers and individuals need to come for retests when they are due and offered.
Staff and families’ responses
One hundred and fifty questionnaires were sent out to families and staff via the community nursing service within Birmingham. The aim of this exercise was to elicit the views of families and staff about eye care services for people with learning disabilities.
The response from the exercise resulted in eleven questionnaires being returned. The responses produced the following information which is only relevant to those who responded.
The age ranges of those cared for by the respondents were between 9 and 49 years. When asked to rate how well the eye test was conducted the following was noted:
Number of Carers/Families = 4
How well was test conducted -Very well
Number of Carers/Families = 4
How well was test conducted - Well
Number of Carers/Families = 1
How well was test conducted - Poorly
Number of Carers/Families = 0
How well was test conducted - Very poorly
Number of Carers/Families = 2
How well was test conducted - No response
The measurement between very well, well, poorly and very poorly is subjective. The comments noted by carers on tests conducted as very well were:
- Good understanding of service user need.
- Service users were treated as customers, with respect.
- Names were remembered.
- Thorough eye exams were given.
- Good feedback was given.
- The optometrist's positive approach.
- They repaired glasses straight away.
- They were sympathetic towards difficulties.
Comments noted from remaining responses were that not all ‘high street’ optometrists are experienced in testing people with learning disabilities. When asked about the behaviours or actions, which may be seen in people with learning disabilities indicating possible sight problems, the following was reported:
- Increased frequency of headaches.
- Straining of eyes.
- Sitting close to the TV or loss of enjoyment from the TV.
- Increase in accidents, stumbling, tripping, and difficulty in occupational tasks.
- Squinting, frowning.
When asked what could be done to improve eye care services the comments made were:
- For optometrists to have an awareness of learning disability.
- Regular check-ups.
- Support to escort the service user to appointments. For some carers it can be a problem getting to and from appointments.
- To spend more time to get the right results.
Responses from home manager
Sixteen home/service managers responded to the questionnaires circulated within Birmingham.
When asked why service users do not wear glasses when they have been prescribed, the following responses were received:
- Service users prefer not to (individual’s choice),
- Staff have to remind service users to wear the glasses,
- Service users cannot cope with wearing them,
- Service users can be unhappy about wearing glasses,
- One individual self injures, so his glasses are taken off.
Conclusion
The information gained in this mapping exercise provided useful information on which the eye 2 eye campaign in Birmingham could focus on improving the quality and access to eye care for people with learning disabilities.
People with learning disabilities and their supporters remain the priority for our work in improving their eye health. Thanks to the mapping exercise, eye 2 eye has been able to work in a positive and proactive way.
May 2008