The patient's story

Imagine that you are a 75-year-old whose sight has been deteriorating. Your GP has referred you to an eye clinic at the hospital for an appointment and although you feel anxious you are sure things will be explained to you and the clinic staff will put your mind at ease.
The day of the appointment arrives, you have never been to the eye clinic before and are not sure where to go because you can't read the signs and the corridors are dimly lit.
Eventually, after waiting for some time, you see the consultant and are told that you have a condition to do with a part of your eye called the macula which you've never heard of before.
You can't really remember what the condition is called and don't really understand what it means, but the consultant says your sight will get worse and hands you a form to sign which he says will register you as blind.
As you walk out of the clinic and make your way to the bus stop a flood of questions and worries come to your mind: Am I really going blind? How will I manage? Who do I go to for help?

lack of information
The scenario above might seem shocking and far-fetched but a report from the Royal National Institute for the Blind (Patients Talking 1 and 21,2 published in 2000) shows this is a common experience and happens to patients in eye clinics across the country every day.
The RNIB's eye health unit commissioned this qualitative study to explore user issues. Participants were asked about their whole experience of attending an outpatient eye clinic. Almost all of them appreciated the level of clinical expertise and said their medical needs were being met; but there was a gap in their non-medical information and support needs.
Since the report was published, a number of new information services have been developed within eye clinics nationally.
The importance of putting patients' needs first in planning and delivering services is being given increasingly high status in healthcare circles and concepts of patient advocacy and patient empowerment are becoming more familiar. All of which are being fully supported by a growing number of medical professions.
Yet, Patients Talking shows a starkly different picture for eye clinic patients featuring a lack of information and support.
The effects on people with sight problems, particularly older people, are serious. Research has already established that unless people are helped to come to terms with losing their sight, they can rapidly lose their confidence and ability to get out and about and become isolated and depressed.3,4,5 In addition, there is evidence that older people often find it difficult to look after themselves and are more likely to have accidents around the home.6,7
A growing number of health professionals recognise the need for non-medical support but are unsure about what action to take and unaware of the various levels of hospital information services which can be considered. In response to the views expressed in Patients Talking, the RNIB investigated ways to help eye professionals improve the patients' experience of visiting the eye clinic.

Eye Clinic Support Studies
The Eye Clinic Support Studies Course is run jointly by the RNIB and City University, London. The course provides key eye clinic staff (such as ophthalmic nurses, orthoptists, optometrists, voluntary agency staff, patient advisory liaison workers Ð PALs), with the skills, knowledge and confidence needed to enable them to give initial emotional support and information following diagnosis of permanent sight loss.
Hospital information service handbook
This is a handbook compiled to assist with the setting up and development of information services in the hospital eye clinics.
It offers best practice guidelines on providing information for people with sight loss. It includes examples of what has worked within existing information services based in eye clinics throughout the UK and describes the various styles of support available. The handbook is available from RNIB Customer Services (priced £20 plus £2.50 handling charge).

The RNIB's information file: Supporting your patients
This is a resource tool for eye clinic professionals such as ophthalmologists and ophthalmic nurses. It provides information on RNIB services and a list of publications which will help to support newly diagnosed patients. Easy-to-understand patient information leaflets on eye conditions, low vision and registration and benefits are also included in the file.
Eye Clinic Liaison Officer
An eye clinic liaison officer (ECLO) is an important member of the eye clinic team. Patients facing permanent sight loss often need time to discuss their feelings, fears and aspirations, and to ask questions.
This time, which is often not available to medical or nursing staff within the clinic, can by provided by an ECLO.
The ECLO provides a bridging service between health, community and social services. This includes offering initial emotional support to patients following diagnosis, through to providing information on appropriate services and support (both local and national) for patients.
The RNIB currently manages seven ECLOs. Other national and local organisations for people with sight loss, as well as social services and the NHS, fund ECLOs throughout the country, although provision is patchy.

Survey of support services
In 2002, RNIB carried out a mapping survey of the type and range of support services for patients Ð especially those facing permanent sight loss Ð in approximately 158 eye clinics across the UK.
While some hospitals provide very good services, the survey highlighted varied and patchy levels of provision, often isolated from each other and insufficiently publicised. The report called for all eye clinics to establish trained ECLO posts as soon as possible and to promote the ECLO service as widely as possible.

Further information
Further details on the Eye Clinic Support Studies Course are available from Mark Browne at the Low Vision and Eye Health Unit on 020 7391 2309.
For further information on the Hospital Information Service Handbook, contact Michelle Coultharde-Steer on 020 7391 2344 or order direct from RNIB Customer Services quoting product code PR11832.
For more information on the RNIB file, contact Nita Odedra on 020 7391 2193 or order direct from RNIB customer services quoting product code PR11954. The file is available for £25 (includes annual updates for three years).

References
1 Patients Talking: Hospital outpatient eye services Ð the sight impaired user's view: a pilot study. RNIB 2000, Sheena McBride.
2 Patients Talking 2: The eye clinic journey experienced by blind and partially sighted adults: a quantitative study. RNIB 2000. Sheena McBride.
3 PP Lee, K Spritzer, R D Hays.The impact of blurred vision on functioning and well being. Ophthalmology, 1997; Vol 104, No 3 March.
4 Tsai, Cheng, Hsu, Liu and Chou. Association between visual impairment and depression in the elderly. Journal of Formason Medical Association, 2003; 102(2): 86-90, Febraury.
5 Koenes SG. Karshmer JF. Depression: a comparison study between blind and sighted adolescents. Issues in Mental Health Nursing, 2000; 21(3):269-79, Apr-May.
6 Klein BE, Klein R, Lee KE. Cruickshanks. Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology, 1998; 105:160-4.
7 Ivers RQ, Norton R, Cumming RG, Butler M, Campbell AJ. Visual impairment and risk of hip fracture. Am J Epidemiol, 2000; 152:633-9.
8. Mark Browne. Patient Support Services in Eye Clinics Ð A Nationwide Survey, RNIB 2002.

Nita Odedera is an eye health officer at the Royal National Institute for the BlindImagine that you are a 75-year-old whose sight has been deteriorating. Your GP has referred you to an eye clinic at the hospital for an appointment and although you feel anxious you are sure things will be explained to you and the clinic staff will put your mind at ease.
The day of the appointment arrives, you have never been to the eye clinic before and are not sure where to go because you can't read the signs and the corridors are dimly lit.
Eventually, after waiting for some time, you see the consultant and are told that you have a condition to do with a part of your eye called the macula which you've never heard of before.
You can't really remember what the condition is called and don't really understand what it means, but the consultant says your sight will get worse and hands you a form to sign which he says will register you as blind.
As you walk out of the clinic and make your way to the bus stop a flood of questions and worries come to your mind: Am I really going blind? How will I manage? Who do I go to for help?

lack of information
The scenario above might seem shocking and far-fetched but a report from the Royal National Institute for the Blind (Patients Talking 1 and 21,2 published in 2000) shows this is a common experience and happens to patients in eye clinics across the country every day.
The RNIB's eye health unit commissioned this qualitative study to explore user issues. Participants were asked about their whole experience of attending an outpatient eye clinic. Almost all of them appreciated the level of clinical expertise and said their medical needs were being met; but there was a gap in their non-medical information and support needs.
Since the report was published, a number of new information services have been developed within eye clinics nationally.
The importance of putting patients' needs first in planning and delivering services is being given increasingly high status in healthcare circles and concepts of patient advocacy and patient empowerment are becoming more familiar. All of which are being fully supported by a growing number of medical professions.
Yet, Patients Talking shows a starkly different picture for eye clinic patients featuring a lack of information and support.
The effects on people with sight problems, particularly older people, are serious. Research has already established that unless people are helped to come to terms with losing their sight, they can rapidly lose their confidence and ability to get out and about and become isolated and depressed.3,4,5 In addition, there is evidence that older people often find it difficult to look after themselves and are more likely to have accidents around the home.6,7
A growing number of health professionals recognise the need for non-medical support but are unsure about what action to take and unaware of the various levels of hospital information services which can be considered. In response to the views expressed in Patients Talking, the RNIB investigated ways to help eye professionals improve the patients' experience of visiting the eye clinic.

Eye Clinic Support Studies
The Eye Clinic Support Studies Course is run jointly by the RNIB and City University, London. The course provides key eye clinic staff (such as ophthalmic nurses, orthoptists, optometrists, voluntary agency staff, patient advisory liaison workers Ð PALs), with the skills, knowledge and confidence needed to enable them to give initial emotional support and information following diagnosis of permanent sight loss.
Hospital information service handbook
This is a handbook compiled to assist with the setting up and development of information services in the hospital eye clinics.
It offers best practice guidelines on providing information for people with sight loss. It includes examples of what has worked within existing information services based in eye clinics throughout the UK and describes the various styles of support available. The handbook is available from RNIB Customer Services (priced £20 plus £2.50 handling charge).

The RNIB's information file: Supporting your patients
This is a resource tool for eye clinic professionals such as ophthalmologists and ophthalmic nurses. It provides information on RNIB services and a list of publications which will help to support newly diagnosed patients. Easy-to-understand patient information leaflets on eye conditions, low vision and registration and benefits are also included in the file.
Eye Clinic Liaison Officer
An eye clinic liaison officer (ECLO) is an important member of the eye clinic team. Patients facing permanent sight loss often need time to discuss their feelings, fears and aspirations, and to ask questions.
This time, which is often not available to medical or nursing staff within the clinic, can by provided by an ECLO.
The ECLO provides a bridging service between health, community and social services. This includes offering initial emotional support to patients following diagnosis, through to providing information on appropriate services and support (both local and national) for patients.
The RNIB currently manages seven ECLOs. Other national and local organisations for people with sight loss, as well as social services and the NHS, fund ECLOs throughout the country, although provision is patchy.

Survey of support services
In 2002, RNIB carried out a mapping survey of the type and range of support services for patients Ð especially those facing permanent sight loss Ð in approximately 158 eye clinics across the UK.
While some hospitals provide very good services, the survey highlighted varied and patchy levels of provision, often isolated from each other and insufficiently publicised. The report called for all eye clinics to establish trained ECLO posts as soon as possible and to promote the ECLO service as widely as possible.

Further information
Further details on the Eye Clinic Support Studies Course are available from Mark Browne at the Low Vision and Eye Health Unit on 020 7391 2309.
For further information on the Hospital Information Service Handbook, contact Michelle Coultharde-Steer on 020 7391 2344 or order direct from RNIB Customer Services quoting product code PR11832.
For more information on the RNIB file, contact Nita Odedra on 020 7391 2193 or order direct from RNIB customer services quoting product code PR11954. The file is available for £25 (includes annual updates for three years).

References
1 Patients Talking: Hospital outpatient eye services Ð the sight impaired user's view: a pilot study. RNIB 2000, Sheena McBride.
2 Patients Talking 2: The eye clinic journey experienced by blind and partially sighted adults: a quantitative study. RNIB 2000. Sheena McBride.
3 PP Lee, K Spritzer, R D Hays.The impact of blurred vision on functioning and well being. Ophthalmology, 1997; Vol 104, No 3 March.
4 Tsai, Cheng, Hsu, Liu and Chou. Association between visual impairment and depression in the elderly. Journal of Formason Medical Association, 2003; 102(2): 86-90, Febraury.
5 Koenes SG. Karshmer JF. Depression: a comparison study between blind and sighted adolescents. Issues in Mental Health Nursing, 2000; 21(3):269-79, Apr-May.
6 Klein BE, Klein R, Lee KE. Cruickshanks. Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology, 1998; 105:160-4.
7 Ivers RQ, Norton R, Cumming RG, Butler M, Campbell AJ. Visual impairment and risk of hip fracture. Am J Epidemiol, 2000; 152:633-9.
8. Mark Browne. Patient Support Services in Eye Clinics Ð A Nationwide Survey, RNIB 2002.

Nita Odedera is an eye health officer at the Royal National Institute for the BlindImagine that you are a 75-year-old whose sight has been deteriorating. Your GP has referred you to an eye clinic at the hospital for an appointment and although you feel anxious you are sure things will be explained to you and the clinic staff will put your mind at ease.
The day of the appointment arrives, you have never been to the eye clinic before and are not sure where to go because you can't read the signs and the corridors are dimly lit.
Eventually, after waiting for some time, you see the consultant and are told that you have a condition to do with a part of your eye called the macula which you've never heard of before.
You can't really remember what the condition is called and don't really understand what it means, but the consultant says your sight will get worse and hands you a form to sign which he says will register you as blind.
As you walk out of the clinic and make your way to the bus stop a flood of questions and worries come to your mind: Am I really going blind? How will I manage? Who do I go to for help?

lack of information
The scenario above might seem shocking and far-fetched but a report from the Royal National Institute for the Blind (Patients Talking 1 and 21,2 published in 2000) shows this is a common experience and happens to patients in eye clinics across the country every day.
The RNIB's eye health unit commissioned this qualitative study to explore user issues. Participants were asked about their whole experience of attending an outpatient eye clinic. Almost all of them appreciated the level of clinical expertise and said their medical needs were being met; but there was a gap in their non-medical information and support needs.
Since the report was published, a number of new information services have been developed within eye clinics nationally.
The importance of putting patients' needs first in planning and delivering services is being given increasingly high status in healthcare circles and concepts of patient advocacy and patient empowerment are becoming more familiar. All of which are being fully supported by a growing number of medical professions.
Yet, Patients Talking shows a starkly different picture for eye clinic patients featuring a lack of information and support.
The effects on people with sight problems, particularly older people, are serious. Research has already established that unless people are helped to come to terms with losing their sight, they can rapidly lose their confidence and ability to get out and about and become isolated and depressed.3,4,5 In addition, there is evidence that older people often find it difficult to look after themselves and are more likely to have accidents around the home.6,7
A growing number of health professionals recognise the need for non-medical support but are unsure about what action to take and unaware of the various levels of hospital information services which can be considered. In response to the views expressed in Patients Talking, the RNIB investigated ways to help eye professionals improve the patients' experience of visiting the eye clinic.

Eye Clinic Support Studies
The Eye Clinic Support Studies Course is run jointly by the RNIB and City University, London. The course provides key eye clinic staff (such as ophthalmic nurses, orthoptists, optometrists, voluntary agency staff, patient advisory liaison workers Ð PALs), with the skills, knowledge and confidence needed to enable them to give initial emotional support and information following diagnosis of permanent sight loss.
Hospital information service handbook
This is a handbook compiled to assist with the setting up and development of information services in the hospital eye clinics.
It offers best practice guidelines on providing information for people with sight loss. It includes examples of what has worked within existing information services based in eye clinics throughout the UK and describes the various styles of support available. The handbook is available from RNIB Customer Services (priced £20 plus £2.50 handling charge).

The RNIB's information file: Supporting your patients
This is a resource tool for eye clinic professionals such as ophthalmologists and ophthalmic nurses. It provides information on RNIB services and a list of publications which will help to support newly diagnosed patients. Easy-to-understand patient information leaflets on eye conditions, low vision and registration and benefits are also included in the file.
Eye Clinic Liaison Officer
An eye clinic liaison officer (ECLO) is an important member of the eye clinic team. Patients facing permanent sight loss often need time to discuss their feelings, fears and aspirations, and to ask questions.
This time, which is often not available to medical or nursing staff within the clinic, can by provided by an ECLO.
The ECLO provides a bridging service between health, community and social services. This includes offering initial emotional support to patients following diagnosis, through to providing information on appropriate services and support (both local and national) for patients.
The RNIB currently manages seven ECLOs. Other national and local organisations for people with sight loss, as well as social services and the NHS, fund ECLOs throughout the country, although provision is patchy.

Survey of support services
In 2002, RNIB carried out a mapping survey of the type and range of support services for patients Ð especially those facing permanent sight loss Ð in approximately 158 eye clinics across the UK.
While some hospitals provide very good services, the survey highlighted varied and patchy levels of provision, often isolated from each other and insufficiently publicised. The report called for all eye clinics to establish trained ECLO posts as soon as possible and to promote the ECLO service as widely as possible.

Further information
Further details on the Eye Clinic Support Studies Course are available from Mark Browne at the Low Vision and Eye Health Unit on 020 7391 2309.
For further information on the Hospital Information Service Handbook, contact Michelle Coultharde-Steer on 020 7391 2344 or order direct from RNIB Customer Services quoting product code PR11832.
For more information on the RNIB file, contact Nita Odedra on 020 7391 2193 or order direct from RNIB customer services quoting product code PR11954. The file is available for £25 (includes annual updates for three years).

References
1 Patients Talking: Hospital outpatient eye services Ð the sight impaired user's view: a pilot study. RNIB 2000, Sheena McBride.
2 Patients Talking 2: The eye clinic journey experienced by blind and partially sighted adults: a quantitative study. RNIB 2000. Sheena McBride.
3 PP Lee, K Spritzer, R D Hays.The impact of blurred vision on functioning and well being. Ophthalmology, 1997; Vol 104, No 3 March.
4 Tsai, Cheng, Hsu, Liu and Chou. Association between visual impairment and depression in the elderly. Journal of Formason Medical Association, 2003; 102(2): 86-90, Febraury.
5 Koenes SG. Karshmer JF. Depression: a comparison study between blind and sighted adolescents. Issues in Mental Health Nursing, 2000; 21(3):269-79, Apr-May.
6 Klein BE, Klein R, Lee KE. Cruickshanks. Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology, 1998; 105:160-4.
7 Ivers RQ, Norton R, Cumming RG, Butler M, Campbell AJ. Visual impairment and risk of hip fracture. Am J Epidemiol, 2000; 152:633-9.
8. Mark Browne. Patient Support Services in Eye Clinics Ð A Nationwide Survey, RNIB 2002.

Nita Odedera is an eye health officer at the Royal National Institute for the BlindImagine that you are a 75-year-old whose sight has been deteriorating. Your GP has referred you to an eye clinic at the hospital for an appointment and although you feel anxious you are sure things will be explained to you and the clinic staff will put your mind at ease.
The day of the appointment arrives, you have never been to the eye clinic before and are not sure where to go because you can't read the signs and the corridors are dimly lit.
Eventually, after waiting for some time, you see the consultant and are told that you have a condition to do with a part of your eye called the macula which you've never heard of before.
You can't really remember what the condition is called and don't really understand what it means, but the consultant says your sight will get worse and hands you a form to sign which he says will register you as blind.
As you walk out of the clinic and make your way to the bus stop a flood of questions and worries come to your mind: Am I really going blind? How will I manage? Who do I go to for help?

lack of information
The scenario above might seem shocking and far-fetched but a report from the Royal National Institute for the Blind (Patients Talking 1 and 21,2 published in 2000) shows this is a common experience and happens to patients in eye clinics across the country every day.
The RNIB's eye health unit commissioned this qualitative study to explore user issues. Participants were asked about their whole experience of attending an outpatient eye clinic. Almost all of them appreciated the level of clinical expertise and said their medical needs were being met; but there was a gap in their non-medical information and support needs.
Since the report was published, a number of new information services have been developed within eye clinics nationally.
The importance of putting patients' needs first in planning and delivering services is being given increasingly high status in healthcare circles and concepts of patient advocacy and patient empowerment are becoming more familiar. All of which are being fully supported by a growing number of medical professions.
Yet, Patients Talking shows a starkly different picture for eye clinic patients featuring a lack of information and support.
The effects on people with sight problems, particularly older people, are serious. Research has already established that unless people are helped to come to terms with losing their sight, they can rapidly lose their confidence and ability to get out and about and become isolated and depressed.3,4,5 In addition, there is evidence that older people often find it difficult to look after themselves and are more likely to have accidents around the home.6,7
A growing number of health professionals recognise the need for non-medical support but are unsure about what action to take and unaware of the various levels of hospital information services which can be considered. In response to the views expressed in Patients Talking, the RNIB investigated ways to help eye professionals improve the patients' experience of visiting the eye clinic.

Eye Clinic Support Studies
The Eye Clinic Support Studies Course is run jointly by the RNIB and City University, London. The course provides key eye clinic staff (such as ophthalmic nurses, orthoptists, optometrists, voluntary agency staff, patient advisory liaison workers Ð PALs), with the skills, knowledge and confidence needed to enable them to give initial emotional support and information following diagnosis of permanent sight loss.
Hospital information service handbook
This is a handbook compiled to assist with the setting up and development of information services in the hospital eye clinics.
It offers best practice guidelines on providing information for people with sight loss. It includes examples of what has worked within existing information services based in eye clinics throughout the UK and describes the various styles of support available. The handbook is available from RNIB Customer Services (priced £20 plus £2.50 handling charge).

The RNIB's information file: Supporting your patients
This is a resource tool for eye clinic professionals such as ophthalmologists and ophthalmic nurses. It provides information on RNIB services and a list of publications which will help to support newly diagnosed patients. Easy-to-understand patient information leaflets on eye conditions, low vision and registration and benefits are also included in the file.
Eye Clinic Liaison Officer
An eye clinic liaison officer (ECLO) is an important member of the eye clinic team. Patients facing permanent sight loss often need time to discuss their feelings, fears and aspirations, and to ask questions.
This time, which is often not available to medical or nursing staff within the clinic, can by provided by an ECLO.
The ECLO provides a bridging service between health, community and social services. This includes offering initial emotional support to patients following diagnosis, through to providing information on appropriate services and support (both local and national) for patients.
The RNIB currently manages seven ECLOs. Other national and local organisations for people with sight loss, as well as social services and the NHS, fund ECLOs throughout the country, although provision is patchy.

Survey of support services
In 2002, RNIB carried out a mapping survey of the type and range of support services for patients Ð especially those facing permanent sight loss Ð in approximately 158 eye clinics across the UK.
While some hospitals provide very good services, the survey highlighted varied and patchy levels of provision, often isolated from each other and insufficiently publicised. The report called for all eye clinics to establish trained ECLO posts as soon as possible and to promote the ECLO service as widely as possible.

Further information
Further details on the Eye Clinic Support Studies Course are available from Mark Browne at the Low Vision and Eye Health Unit on 020 7391 2309.
For further information on the Hospital Information Service Handbook, contact Michelle Coultharde-Steer on 020 7391 2344 or order direct from RNIB Customer Services quoting product code PR11832.
For more information on the RNIB file, contact Nita Odedra on 020 7391 2193 or order direct from RNIB customer services quoting product code PR11954. The file is available for £25 (includes annual updates for three years).

References
1 Patients Talking: Hospital outpatient eye services Ð the sight impaired user's view: a pilot study. RNIB 2000, Sheena McBride.
2 Patients Talking 2: The eye clinic journey experienced by blind and partially sighted adults: a quantitative study. RNIB 2000. Sheena McBride.
3 PP Lee, K Spritzer, R D Hays.The impact of blurred vision on functioning and well being. Ophthalmology, 1997; Vol 104, No 3 March.
4 Tsai, Cheng, Hsu, Liu and Chou. Association between visual impairment and depression in the elderly. Journal of Formason Medical Association, 2003; 102(2): 86-90, Febraury.
5 Koenes SG. Karshmer JF. Depression: a comparison study between blind and sighted adolescents. Issues in Mental Health Nursing, 2000; 21(3):269-79, Apr-May.
6 Klein BE, Klein R, Lee KE. Cruickshanks. Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology, 1998; 105:160-4.
7 Ivers RQ, Norton R, Cumming RG, Butler M, Campbell AJ. Visual impairment and risk of hip fracture. Am J Epidemiol, 2000; 152:633-9.
8. Mark Browne. Patient Support Services in Eye Clinics Ð A Nationwide Survey, RNIB 2002.

Nita Odedera is an eye health officer at the Royal National Institute for the BlindImagine that you are a 75-year-old whose sight has been deteriorating. Your GP has referred you to an eye clinic at the hospital for an appointment and although you feel anxious you are sure things will be explained to you and the clinic staff will put your mind at ease.
The day of the appointment arrives, you have never been to the eye clinic before and are not sure where to go because you can't read the signs and the corridors are dimly lit.
Eventually, after waiting for some time, you see the consultant and are told that you have a condition to do with a part of your eye called the macula which you've never heard of before.
You can't really remember what the condition is called and don't really understand what it means, but the consultant says your sight will get worse and hands you a form to sign which he says will register you as blind.
As you walk out of the clinic and make your way to the bus stop a flood of questions and worries come to your mind: Am I really going blind? How will I manage? Who do I go to for help?

lack of information
The scenario above might seem shocking and far-fetched but a report from the Royal National Institute for the Blind (Patients Talking 1 and 21,2 published in 2000) shows this is a common experience and happens to patients in eye clinics across the country every day.
The RNIB's eye health unit commissioned this qualitative study to explore user issues. Participants were asked about their whole experience of attending an outpatient eye clinic. Almost all of them appreciated the level of clinical expertise and said their medical needs were being met; but there was a gap in their non-medical information and support needs.
Since the report was published, a number of new information services have been developed within eye clinics nationally.
The importance of putting patients' needs first in planning and delivering services is being given increasingly high status in healthcare circles and concepts of patient advocacy and patient empowerment are becoming more familiar. All of which are being fully supported by a growing number of medical professions.
Yet, Patients Talking shows a starkly different picture for eye clinic patients featuring a lack of information and support.
The effects on people with sight problems, particularly older people, are serious. Research has already established that unless people are helped to come to terms with losing their sight, they can rapidly lose their confidence and ability to get out and about and become isolated and depressed.3,4,5 In addition, there is evidence that older people often find it difficult to look after themselves and are more likely to have accidents around the home.6,7
A growing number of health professionals recognise the need for non-medical support but are unsure about what action to take and unaware of the various levels of hospital information services which can be considered. In response to the views expressed in Patients Talking, the RNIB investigated ways to help eye professionals improve the patients' experience of visiting the eye clinic.

Eye Clinic Support Studies
The Eye Clinic Support Studies Course is run jointly by the RNIB and City University, London. The course provides key eye clinic staff (such as ophthalmic nurses, orthoptists, optometrists, voluntary agency staff, patient advisory liaison workers Ð PALs), with the skills, knowledge and confidence needed to enable them to give initial emotional support and information following diagnosis of permanent sight loss.
Hospital information service handbook
This is a handbook compiled to assist with the setting up and development of information services in the hospital eye clinics.
It offers best practice guidelines on providing information for people with sight loss. It includes examples of what has worked within existing information services based in eye clinics throughout the UK and describes the various styles of support available. The handbook is available from RNIB Customer Services (priced £20 plus £2.50 handling charge).

The RNIB's information file: Supporting your patients
This is a resource tool for eye clinic professionals such as ophthalmologists and ophthalmic nurses. It provides information on RNIB services and a list of publications which will help to support newly diagnosed patients. Easy-to-understand patient information leaflets on eye conditions, low vision and registration and benefits are also included in the file.
Eye Clinic Liaison Officer
An eye clinic liaison officer (ECLO) is an important member of the eye clinic team. Patients facing permanent sight loss often need time to discuss their feelings, fears and aspirations, and to ask questions.
This time, which is often not available to medical or nursing staff within the clinic, can by provided by an ECLO.
The ECLO provides a bridging service between health, community and social services. This includes offering initial emotional support to patients following diagnosis, through to providing information on appropriate services and support (both local and national) for patients.
The RNIB currently manages seven ECLOs. Other national and local organisations for people with sight loss, as well as social services and the NHS, fund ECLOs throughout the country, although provision is patchy.

Survey of support services
In 2002, RNIB carried out a mapping survey of the type and range of support services for patients Ð especially those facing permanent sight loss Ð in approximately 158 eye clinics across the UK.
While some hospitals provide very good services, the survey highlighted varied and patchy levels of provision, often isolated from each other and insufficiently publicised. The report called for all eye clinics to establish trained ECLO posts as soon as possible and to promote the ECLO service as widely as possible.

Further information
Further details on the Eye Clinic Support Studies Course are available from Mark Browne at the Low Vision and Eye Health Unit on 020 7391 2309.
For further information on the Hospital Information Service Handbook, contact Michelle Coultharde-Steer on 020 7391 2344 or order direct from RNIB Customer Services quoting product code PR11832.
For more information on the RNIB file, contact Nita Odedra on 020 7391 2193 or order direct from RNIB customer services quoting product code PR11954. The file is available for £25 (includes annual updates for three years).

References
1 Patients Talking: Hospital outpatient eye services Ð the sight impaired user's view: a pilot study. RNIB 2000, Sheena McBride.
2 Patients Talking 2: The eye clinic journey experienced by blind and partially sighted adults: a quantitative study. RNIB 2000. Sheena McBride.
3 PP Lee, K Spritzer, R D Hays.The impact of blurred vision on functioning and well being. Ophthalmology, 1997; Vol 104, No 3 March.
4 Tsai, Cheng, Hsu, Liu and Chou. Association between visual impairment and depression in the elderly. Journal of Formason Medical Association, 2003; 102(2): 86-90, Febraury.
5 Koenes SG. Karshmer JF. Depression: a comparison study between blind and sighted adolescents. Issues in Mental Health Nursing, 2000; 21(3):269-79, Apr-May.
6 Klein BE, Klein R, Lee KE. Cruickshanks. Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology, 1998; 105:160-4.
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Nita Odedera is an eye health officer at the Royal National Institute for the Blind