Taking a blind bit of notice in County Durham
Researched & written by Richard Cox of Seeing Sense
Published by Durham Sight Loss Survey Partnership November 2008
Quotations and extracts used by permission
Cover images are representational and not of people living in County Durham
Copyright (c) 2008 Durham Sight Loss Survey Partnership

Note: in this .txt file, all the tables have been converted to text, and the images have all been removed. I am not sure if the contents and footers will be a hindrance or a help. But I have left them in. (by Author Richard Cox).

Available versions of this report
Copies are available in accessible formats
Copies of the full report or the executive summary can be downloaded from www.blindlifeindurham.org.uk as an Acrobat file (pdf), a Word document (doc) in standard size print, a Word document (doc) in large print, a plain text file (.txt) or as an audio version (MP3). The executive summary can also be downloaded from www.cdsbps.co.uk.
A CD is available containing all these versions from Blind life in Durham and County Durham Society for the Blind and Partially Sighted.
Finding your way around the document
Readers who may find it difficult or too time consuming to read a large document such as this are advised to begin by reading the first 2 sections after the contents. These are the Introduction and the Executive Summary, which together give a good overview about why this report has been produced and its main findings and recommendations. Other information such as acknowledgements and background information has been placed in appendices to enable visually impaired readers to get to the heart of the report without having to browse through this material first.

Contents
Introduction	1
Executive summary	2
Context of the report	4
About visual impairment	4
Incidence in County Durham	4
Understanding sight loss	5
Outline of the eyecare pathway	6
Undertaking the survey	7
How the focus groups were arranged	7
Selection criteria	7
Profile of the those who contributed to the study	7
The ethics of focus group research	8
Focus group findings	10
Services found to be helpful	10
Services found to be unhelpful	10
Services users would have liked	11
User knowledge about service availability and take-up	11
Children and young people	18
Summary of findings	19
The way forward	20
The changing context for service delivery	20
Selecting the most accessible information formats	21
Websites as a source of information	22
Recommendations	23
Recommendations for all service providers	23
Recommendations for the Health Service	24
Recommendations for Durham County Council	25
Recommendations for the Voluntary Sector	25
Appendices	26
Appendix A: Acknowledgements	26
Appendix B: Members of the Durham Sight Loss Survey Partnership	26
Appendix C: Eye Hospitals that serve County Durham residents	27
Appendix D: Review of service provider websites	27
Appendix E: References	28
Appendix F: Recommended reading	29
Appendix G: About the author	31

Introduction
This report summarises the findings of research undertaken with groups of blind and partially sighted people from across County Durham during summer 2008. The work was commissioned by three charities serving visually impaired people in the county, collectively working on the project under the name Durham Sight Loss Survey Partnership. These organisations are Action for Blind People, Blind Life in Durham and County Durham Society for the Blind and Partially Sighted.
The aim of the work has been to establish the views of people in County Durham who are visually impaired in relation to services provided for them by statutory and voluntary organisations. The commissioning organisations wanted to find out how local provision compares with the national picture. The findings are compared with published standards and examples of good practice elsewhere. This localised study follows on from national research published previously by the Victar team at the University of Birmingham: the Network 1000 research (see Recommended reading).
This research was required to span not only those services provided by the commissioning charities themselves, but equally to examine services provided by statutory and not-for-profit organisations whose services impact on the lives of visually impaired people in the county. In practice this largely but not exclusively means health and social care providers.
It was concluded that rather than replicate directly the Network 1000 study on a local sample, it would be more useful to conduct a “softer” type of research to augment the existing body of work.
Consequently this report summarises the views of 44 people from across County Durham, who attended 7 focus groups during a two month period. Some statistical data was collected, but emphasis has been placed on the service users perceptions of the services and support they received from the time of initial diagnosis through to their current situation. These perceptions are illustrated throughout this work with direct quotations, used anonymously and with consent, to give an immediacy and practical reality of the effect of service provision on people’s lives.
Every attempt was made to recruit service users whose visual diagnosis was fairly recent, so that their experiences reflect current practice as far as possible.
Each group was asked to reflect on 3 matters:
* Which services did you find most helpful?
* Which services did you find most unhelpful?
* What services would you have liked?
The report compares these findings and service user perceptions with a range of national and local standards and good practice guides. These are listed in the appendices. The publication of this report is particularly timely as it follows closely upon several major national initiatives which directly relate to policy and practice in this field. This includes the UK Vision Strategy, The Darzi NHS Review, the RNIB Good Practice in Sight document and new work by the Network 1000 team. All of these have been published in the last 6 months (see Recommended reading).
The resulting findings can be used to compare service user experiences with these standards and good practices, so that policy makers, commissioners and providers of services can identify where changes are required. Some suggestions about the way forward are included, but the intention of this study is to promote provider organisations to review their own policies and practice. This should be done with service users themselves.
The researcher and author of the report is Richard Cox of Seeing Sense.
More information about the organisations commissioning this work, and about the author, can be found in appendices at the end of the report.
Executive summary
The purpose of the study
The research summarised in this report was commissioned to establish the views of blind and partially sighted people in County Durham about the services and support they have recently received. 44 adults and children were consulted. They were drawn from every district of the county, both rural and urban, and represented a good cross-section of diversity in age, sex, eye conditions and other key factors. For most people their experiences of services related to sight loss are recent, and their perceptions can therefore be taken to illustrate a snapshot of current practice.
The findings in short
In the majority of cases, service users declared themselves satisfied with most of the services they had received. Individual staff were often singled out for praise about their professionalism and commitment.
However, there were also a number of recurring concerns which were mentioned unprompted by all seven focus groups, and which require attention by all of those providing services for this client group in County Durham.
A significant number of participants were clearly living below their potential for independence, for the want of some emotional support, basic guidance or skills tuition. These needs were for time to talk things through with people who understood, rehabilitation (especially simple outdoor mobility), knowledge of daily living equipment and techniques, benefits advice and low vision prescription and training.
In the absence of information or rehabilitation, people had often found their own solutions. While sometimes creative, some were dangerous and some ineffective. What came across overall were the number of people who were bravely coping as best they could, but without the knowledge of straightforward solutions or simple pieces of equipment which would enrich their lives for so little effort or cost.
The concerns users consistently reported are summarised here, and detailed fully in the Findings
* Lack of emotional support at the time of diagnosis and afterwards – less than half received this, yet most rated it their most important initial need.
* Poor provision of accessible information about services and equipment that was available or could be made available.
* Apparent lack of co-ordination between service organisations: between health and social care, between voluntary organisations, and between voluntary and statutory service providers.
* Considerable gaps in provision of needs: services which they needed but which were not provided, or if they were available, they were unaware of this.
* Less than half had any awareness of the improvements to independence that rehabilitation services can provide.
* Frustration about poor appreciation of the needs and difficulties of visually impaired people when using public and retail services.

Service improvements that can be made
Some of the issues identified in this study have a resource implication, but much can be done by improved inter-agency working and adoption of good practices from elsewhere. Some current practice would seem to indicate avoidance of legal obligations in providing for this client group.
In comparison with some other disabilities, there is a good range of providers both nationally and locally offering a wide range of services for blind and partially sighted people. In view of this, the finding that is perhaps the most disappointing is the wide lack of knowledge about what is already potentially available to improve independence and reduce social isolation. Service users report that there has been a failure to adequately provide up to date and accessible information about the options available from a range of organisations. The local authority has a legal duty to fulfil this requirement (National Assistance Act 1948 (see References) and the National Association of Local Societies for Visually Impaired People also indicates this is a basic requirement for its members. (NALSVI Core Service Standards – (see References).
Although disappointing, the solutions to this key finding are not onerous or expensive. Practical suggestions are contained the Recommendations section of the main report.
Summary of Key Recommendations
By studying the report as a whole, it will be apparent that the following key changes would together address most of the concerns reported in this survey.
1. Provide a full time Eye Clinic Liaison Officer (ECLO) at every eye clinic (including satellite clinics). This role to include the provision of service information and first-line emotional support.
2. Devise a service for those who need more thorough emotional support or counselling.
3. Prepare uncomplicated information unified across all providers, in a range of accessible formats; to keep it up to date; and to utilise pro-active methods to get it to the people who need it at an early stage.
4. Enable service users to be easily and quickly passported through to all the services they require, no matter which agency they happen to approach as their starting point.
5. Commit to adopting existing standards and good practice models, particularly those published by Dept of Health, ADASS, NALSVI and RNIB (see Recommended Reading)
6. Consult service users whose sight loss is recent, and involve them in the planning and delivery of services at every stage.
7. Improve inter-agency liaison for planning and delivering services
8. Regularly monitor the implementation of these recommendations through the Low Vision Services Group.
While listening to the views of visually impaired people who contributed to this survey, the author brought to mind a quotation from Helen Keller which seems to reflect some of their experiences:
“Not blindness, but the attitude of the seeing to the blind is the hardest burden to bear”

Richard Cox, Seeing Sense
October 2008
Context of the report
About visual impairment
* 90% of the public in the UK say sight is the sense they most fear losing (RNIB)
* About 2 million people in the UK are visually impaired (NHS Choice)
* Every day over 100 people in the UK start to lose their sight (RNIB)
* One in twelve of us will become blind or partially sighted by the time we are 60. This rises to one in six by the time we reach 75 (RNIB).
The World Health Organisation defines visually impaired people as anyone who is blind or partially sighted, as opposed to short or long-sighted. If you are visually impaired, you will have some loss or distortion of your vision. Depending on how severe the sight loss is, the conditions are usually known as partial sightedness or blindness. The incidence of eye disease increases markedly with age. Most common eye conditions in the UK that lead to registration with the local authority are degenerative conditions for which treatment is limited and for which vision is uncorrectable with spectacles.
Incidence in County Durham
The table below shows the number of visually impaired people officially Registered with Durham County Council as at October 2008, split into regions. Registration falls into 2 legally defined categories: Sight Impaired (formerly known as Partially Sighted), and Severely Sight Impaired (formerly known as Blind).
District	Registered Sight Impaired (Partially Sighted)	Registered Severely Sight Impaired (Blind)
Derwentside	237	195
Chester-le-St	206	139
Wear Valley	224	187
Durham	273	243
Easington	290	283
Teesdale	74	66
Sedgefield	355	259
Total	1659	1372

Table 1: People registered as Sight Impaired and Severely Sight Impaired in County Durham as at October 2008
Source: Durham County Council
>From these figures it can be seen that the local authority has a formal record of just over three thousand (3031) blind and partially sighted people. However, National evidence has for many years indicated that under-registration is very marked, for a variety of reasons. RNIB estimates that as many as two thirds of those who are eligible may not in fact be registered as blind or partially sighted. This is supported by recent evidence which suggests that there has been an increase in under-registration (Dept of Health)
 Based on these projections it may be that the true number of people in County Durham who have sight sufficiently impaired to require services or support may well be in the range of 8,000 – 10,000.
Like most local authorities, it is likely that a fair number of unregistered people are receiving services, most commonly because of age and infirmity, or because they have learning disabilities (where the incidence of visual impairment is at least one in three). However, these service users are not recorded in the figures if visual impairment is not the presenting problem or no-one gets round to arranging formal registration.
County Durham Society for the Blind and Partially Sighted have had dealings with about 2000 people with significant sight impairment over the past 12 months, and they are also aware that there are many with whom they do not have contact.
Whatever the statistics, there is no reason to suppose that County Durham is significantly different from the rest of the UK, where a high proportion of visually impaired people do not receive services related to their sight loss (RNIB). If they do get any support it is typically short-lived contact rather than ongoing support or longer term monitoring, even though degenerative eye conditions are the most common, so that people’s needs are likely to increase as time passes.
Understanding sight loss
Terminology can be misleading. For example, only 4% of “blind” people see nothing at all (RNIB). Sight impairment is more usefully understood in terms of the tasks that become difficult or impossible because of its effects on each individual. Broadly these can be grouped as problems with independent mobility (especially outdoors), communication (reading, writing, use of computer) and coping with daily tasks (safety in the kitchen, personal care, domestic tasks etc). For some, education and employment are further hurdles that have to be overcome.
According to their own particular lifestyle and levels of vision, each individual will have their own needs and abilities.
However, sight loss does not just bring practical problems. Many of the attendees at the focus groups for this study chose to spend a significant proportion of their time talking about the emotional impact of sight loss, and their concerns about the low level of acknowledgement and understanding there was amongst service providers about this aspect. A recent BBC survey showed that 86% of the public think that counselling should be free on the NHS (see References), and most people assume that emotional support is automatically provided for people losing their sight. Regrettably, this report shows this is rarely the case. Studies show that practical rehabilitation is more effectively taken up when the client is first helped to negotiate the series of psychological pressures that sight loss often triggers. Social exclusion is a common by-product of sight loss, and difficulties in accessing information about services to assist people only compounds their problems.
But visual impairment need not mean lack of independence, social isolation and a poor quality of life. If blind and partially sighted people can be offered . . .
* Support to face up to the emotional trauma of sight loss
* Enough knowledge to choose from the many services on offer to them
* Access to equipment to make life easier
* Opportunity to take up skilled rehabilitation training (for example, in outdoor mobility, communication alternatives and methods to manage daily living tasks).
If all these things are in place, then there is no reason why they cannot continue to maintain confidence and enjoy a fulfilling life.
Outline of the eyecare pathway
To understand the comments that users have made in this report about services they experienced, it is necessary to have some appreciation of the series of events that should follow diagnosis of uncorrectable visual impairment.
Typically a person noticing visual problems will visit a high street optician (optometrist), and if there are signs of eye disease, the optometrist will usually refer their customer to their family GP. If urgent action is deemed necessary, then referral direct to an eye clinic may be initiated, but this is unusual. A GP will normally refer the patient to an eye consultant (ophthalmologist at an eye clinic) and in due course a diagnosis is established.
The commonest causes of sight loss tend to be degenerative over time. If the condition cannot be remedied and/or long term impairment is anticipated, at some point the patient is likely to cross the threshold of criteria to qualify to be registered as either Sight Impaired or Severely Sight Impaired (previously known as Partially Sighted or Blind respectively). If the patient consents to this, the ophthalmologist should complete a form CVI to Certify that the patient is eligible for the local authority to arrange registration.
Certification is the means by which an ophthalmologist indicates that the patient now qualifies for one of the 2 categories of registration. It is also a direct request for an assessment of social care and rehabilitation needs. Copies of form CVI should be provided by the eye clinic to the patient, their GP and the local authority social services department. In County Durham this department is known as Durham Social Care & Health, Adult and Community Services (or Children and Young People's Services for those under 18).
The receipt of form CVI confers legal duties on the local authority. These include the requirement to:
* Arrange Registration if the person consents (DoH CVI guidance 2005)
* Assess their social care needs, including risk (Section 3, Disabled Persons (Services, Consultation and Representation) Act 1986)
* Deliver or arrange for services assessed as necessary, using a system to establish eligibility and priority (Chronically Sick & Disabled persons Act 1970, NHS & Community Care Act 1990)
* Offer the option for the client to take up these services via the Direct Payments scheme (the Health and Social Care Act 2001 made this mandatory from April 2003).
* Provide information about the range of specialist services that are available for visually impaired people, both from the council itself and from all other relevant statutory and non-statutory sources (Section 29, National Assistance Act 1948). This information should be provided in a format that is accessible to each individual (Disability Discrimination Act 1995 and as subsequently enacted).
As noted earlier, a small number of patients decide not to be registered, but many are simply not offered certification, and this appears to be an increasing problem nationally (Dept of Health). No figures were available to unambiguously establish local rates of under-certification for this study.
If certification does not occur, the associated referral for social care and rehabilitation assessment will not routinely occur, and it may not be until sight loss becomes very advanced that social agencies become aware of the individual. This is usually too late to enable effective rehabilitation, and is also likely to mean the patient will have missed out on financial benefits they could have been receiving.
There is a form RVI designed to be used as a similar referral form to the CVI, but for eye clinic use where registration is not currently being pursued. Unfortunately this is little used at present.
Undertaking the survey
How the focus groups were arranged
It was agreed to hold 7 focus groups. Six of these were comprised of adults living in each of the county regions, with Durham and Chester le Street combining. The seventh group consisted of secondary school children at Belmont School, which has a unit for visually impaired children drawn from the county as a whole.
The commissioning partnership indicated that Darlington should not be included because of its status as a unitary authority, and as it is not served by the 2 local voluntary organisations or Durham’s Adult and Community Services. However, some people included in the survey did attend Darlington Memorial Hospital for ophthalmic services, and the PCT covers both Darlington and County Durham. Therefore some user comments do apply in this respect.
The participants were recruited by seeking volunteers through talking newspapers, an exhibition and other means. Belmont School was asked for volunteers from each secondary year.
In reality, recruitment proved difficult and time consuming, and threw up challenges relating to the issues of transport, personal mobility, hearing loss (difficulties in groups) and non-attendance.
However, by the end of the study, 44 visually impaired people had attended one of 7 groups. 
Selection criteria
The selection criteria for those invited to the adult groups was simply that attendees should be over 18 and have experienced sight loss fairly recently. It was recognised during the design of the study that it would not be easy to construct focus groups which were statistically representative, and it was not intended that this should be the case. The information required could be largely described as “soft” research to establish service user perspectives. Hence as long as the experiences reported were fairly recent, they were considered valid.
Nevertheless, considerable efforts were made to ensure a broad representation based on geographic location, age, sex, ethnicity, degree of visual loss, additional disabilities and socio-economic grouping.
Profile of the those who contributed to the study
There were 44 participants in 7 focus groups. They ranged in age from 12 to 88 years, with an average age of 55 and a median of 59. The 14 men made up about one third of the total, which reflects the higher incidence of visual impairment amongst women (because on average they live longer).
The intention was to involve people whose sight loss was recent, so that their experience of services reflected current or recent practice. The fact that the survey focussed on recent experience is important for service providers, as it provides meaningful data about user perceptions of what they currently provide and how they provide it.
Not everybody who attended focus groups had recent sight loss, but they still had recent experience of service provision. For example, one adult who attended was blind from birth (1929), and most of the children were also congenitally impaired, being born between 1993 and 1996.
There was a fairly even split between the 2 categories of registration. 18 of the group reported that they were registered as Sight Impaired (previously known as Partially Sighted) and 22 as registered as Severely Sight Impaired (previously known as Blind). The remaining 4 were not registered, either because it appeared to have been overlooked, or in one case the person declined.
Of those whose sight loss was acquired during their lifetime (i.e. was adventitious rather than from birth), the initial registration year ranged from 1998 to the present day. More than one third were registered in the last 30 months, including almost 20% in the current year. 
It proved very difficult to obtain a broad ethnic spread. One attendee was a white US citizen, and one was a student from Malaysia. All the others were white British. This appears to reflect the ethnic makeup of the county, where ethnic diversity is unusually low compared to the UK as a whole.
16 people reported one or more additional disabilities, which is well in excess of one third of the total. Only one reported having a hearing impairment, although this also appeared to be present for at least four or five others. This is an under-representation of combined sight and hearing loss. It can partly be explained by the fact that those with more severe hearing loss generally chose not to attend, because of the particular communications problems they would experience in a group setting. The other disabilities most commonly reported were angina and other heart problems (4), diabetes (4) and Multiple Sclerosis (2).
40% said they lived in a rural setting (18 people). This has implications for their outdoor mobility and their social exclusion. Their isolation and access to city-based services is also reduced due to limited transport options – this group are not car drivers! More than a quarter lived alone, while 40% said that they lived with someone who provided informal care.
One respondent was a student. 17 others were of working age, but only one of these was employed. This is even worse than the already very poor level of employment of visually impaired people nationally. However, all the groups were held during the daytime, which could have been a factor.
A fair degree of geographic spread of the 7 focus groups across the county districts was achieved, as illustrated by the following table.

District	Attendees
Derwentside	6
Sedgefield	7
Wear Valley	7
Durham / 
Chester le Street	8
Easington	5
Teesdale	5
Young people’s group 
(from across the county)	6
Total sample	44

Table 2: Numbers attending focus groups, by district
The ethics of focus group research
Most people experience sight loss as a difficult time in their lives. For many people in this survey this was still a current, painful topic. Research involving people who feel vulnerable requires sensitivity and a professional approach with regard to ethics and confidentiality.
Well over 100 service users were invited to contribute to this research, and due to a number of factors 44 eventually took part. They did so having received written and verbal explanations in advance, and each signed a consent form which was individually read to them on the day if they were unable to read it themselves.
The approach to issues of confidentiality was discussed with each group. It was explained that the purpose of the research was to produce a report that was to be largely based on service user perceptions, and would feature some direct quotations where appropriate. Users were asked to accept that some of what they said might therefore be repeated verbatim, but they were also guaranteed that no names would be attached to the quotations. The consent forms sought permission to record the proceedings so that an accurate transcript could be produced. All group members readily agreed to these arrangements without exception.
At the start of each focus group, a set of ground rules was suggested by the researcher. The group members all agreed that it would be appropriate to name the organisations which they were describing, whether critically or positively, but that they would not name individuals within those organisations. Many people found it difficult to adhere to this latter “rule” once the discussion was under way!
The group were given clear assurances that nothing they had to say would in any way affect the medical or social care and support they would receive.
A few groups were video-recorded, for the purpose of providing users views on film to enhance the presentation of the findings. This was only done once the group had consented separately to this process and accepted that this would be likely to make them identifiable. Interestingly, several people were actively keen that their views should be more widely aired, which perhaps illustrates that visually impaired service users find it difficult for their views to be listened to.
It was not uncommon for anger and frustration to be expressed in the groups, and sometimes for tears to be shed as they shared their experiences. No-one was forced to participate, and members were free to stop contributing at any time. Without exception, at the end of each discussion, each group expressed satisfaction upon discovering that they had experiences shared in common, and were pleased that they could talk to others who had gone through similar feelings. The tears were not seen as a bad thing; more of a release for some who finally found others who understood.
“I was a bit apprehensive about coming to the group, but it turned out to be a great experience – being able to talk to others like me about sight loss. I came away feeling really encouraged.”
 There was clearly some positive therapy going on within the groups, and some people exchanged their details for ongoing contact. This finding serves as a pointer to one way of assisting people to work through their pain and fears through sharing with their peers.
It was inevitable that discussions of this type would throw up the need for referral for various services, and so, with individual consent, these were passed on as they arose. A few cases were disturbing because there appeared to be a gap in the process of diagnosis and treatment. Some risk issues also became apparent, mainly due to lack of mobility training. Some people described road crossing techniques which were obviously dangerous. One gentleman was continuing to drive - “but mostly in the daytime”!

Focus group findings
In reading these findings, it should be borne in mind that these are service user perceptions.
The researcher and the commissioning partnership agreed a framework for guiding the discussions. Each group was asked to reflect on 3 headline questions:
* Which services did you find most helpful?
* Which services did you find most unhelpful?
* What services would you have liked?
These categories were designed to reflect similar topics to those which were explored as part of the Network 1000 survey. There were quite similar, recurrent answers to these questions, as summarised below. It soon became clear that for most groups the same themes were paramount. Where issues appear in more than one list below, it reflects the differences between those who received a good service and those that wished that they had.
Note: The term ECLO used throughout this report stands for Eye Clinic Liaison Officers – non medical paid staff skilled in providing support and information to visually impaired people at an early stage.
Services found to be helpful
* Emotional support by ECLOs at or soon after diagnosis or certification
* Clear explanations of what would happen next at each stage from diagnosis onwards
* A known person to contact for further advice, reassurance and information
* Low vision aids
* Rapid follow-up to referral for registration
* Talking through feelings and ways of coping with sight loss in a small group of peers
* Talking newspapers
* Simple daily living equipment
* Advice about entitlement to financial benefits
Not everyone valued these services, but when they didn’t, it was always because they hadn’t been offered them! Poor knowledge about service availability is explored further below.
Services found to be unhelpful
* The insensitivity of a number of ophthalmologists at the point of diagnosis
 “When I went to the RVI, the doctor said “Look, you’re going to go blind. There’s nothing we can do for you.” 
What he should have said was "But, look, your life isn’t over. I’d like to introduce you to our support person, and to put you in touch with the Macular Disease Society”. But no-one said anything about support, and when we walked out of there, I said to my wife “Look, in a while I am going to be blind, and I’ll be no use to you”. I was going to jump off the Millennium Bridge, but I chickened out. 
Later on, I found out about the society by chance, when my wife heard it mentioned on the radio.”
* The lack of recognition of the shock and uncertainty felt upon discovering that vision loss was not curable
“When you are told the bad news (about failing sight) there should be a trained person who can take you to another room, sit down and have a cup of tea and talk with you. 
Not to tell you everything in one go. You should be able to go home, and come back in three weeks and see the same person again.”
* Eye clinic appointment letters not in large print
* GPs not taking an interest
* Difficulty in finding out what services and equipment were available
* Too much information at once, or too much too soon, especially if it was not in a format that could easily be referred back to
* The maze of provider organisations, and lack of clarity about which one did what
* Disability Employment Advisors at job centres who did not understand the needs of visually impaired people
Services users would have liked
* Someone to talk to that understood how they felt at the point of diagnosis and / or certification
“Hospitals have support services for other diseases like cancer, so why not for people losing their sight?”
* Timely information in a format they could access
* Training for retail and public organisation staff to understand the needs of visually impaired people
* Someone to explain to their family and reassure them
* Help to gain confidence and feel safer crossing roads
* Better road crossing designs, with more of them making beeping sounds when it is safe to cross
* Bigger print on foodstuffs and medicines
* Supermarket layouts that remain constant
* A fairer, simpler benefits system.
User knowledge about service availability and take-up
Given the recurrent comments from users about their lack of knowledge of the services available, data was collected from all those surveyed to explore this more thoroughly.
Awareness of organisations serving visually impaired people in the county
This data was collected as a baseline merely to establish to what extent respondents knew of the existence of the key service providers. This does not imply any understanding of the functions of the organisation or of the services they provide.
Groups were asked whether they had any knowledge of the existence of the following service providers:

Service Provider	% aware of 
organisation’s existence
Blind Life in Durham	39 %
Action for Blind People	57 %
County Durham Society 
for the Blind and Partially Sighted	64 %
Low vision clinic	70 %
Adult & Community Services (SSD)	77 %
RNIB	86 %
Guide Dogs	100 %

Table 3: User awareness of principal organisations proving services for visually impaired people in County Durham
o Analysis & commentary
This finding illustrates that a number of service users do not know of the existence of various organisations whose business is to provide key services for them across the county.
“In the eye clinic waiting room there are pamphlets on the walls. But you can’t see them. There’s nobody there to tell you about the pamphlets on the wall, so you walk out without them.”
Knowledge is not the same as usage. For example, only one person was a guide dog owner, but everyone knew about the existence of GDBA. Nevertheless, lack of knowledge prevents potential usage. Although it can be seen that the majority of people knew about some services, the percentage who did not should be a cause for concern. Since these service users had all visited an eye clinic, and all had been assessed by social services, this should have ensured they all knew about most services. Taking County Durham Society for the Blind and Partially Sighted as an example: if this table accurately reflects that one third of service users are unaware of their existence, and hence what they offer, then one third are disadvantaged and excluded.
“Some things you need to be told again later on, because you are too much in shock to take it in the first time.”
The fact that almost a quarter denied knowledge of the existence of Adult and Community Services , even though they had all been assessed by them, may be due to lack of clarity about the name of this organisation. Many respondents were confused by the multiple names given to the local authority section responsible for their service provision. The figure given in the table above was only achieved by the researcher offering alternative names to clarify the organisation being discussed.
The following titles have all been found in current use: Social Services, The Council, Social Care Direct, the Sensory Support Team, Adult Care Services or Adult and Community Services (see DCC website www.durham.gov.uk for examples). The council website also appears to have no information about sight loss support. This situation does not help visually impaired people to understand that the local authority has statutory duties to inform, register, assess and provide services for them.
o Comparison with relevant standards & good practice (see References)
* ADSS Standard 7: “The social services department should provide service users with up-to-date and timely information in the format of their choice on the range of mainstream and specialist services that are available locally” - so that (Outcome 7) - “Service users are able to make better informed decisions about the services they receive”. Progress in Sight: National Standards of Social Care for Visually Impaired Adults. Association of Directors of Social Services (2002).
* The National Assistance Act 1948, section 29 requires local authorities to make disabled people aware of services that would benefit them, even if they are not registered.
* The National Assistance Act 1948, section 30 empowers local authorities to contract out some or all of these services, but they retain the legal duty to ensure the requirements of section 29 are still satisfied.
* The National Association of Local Societies for Visually Impaired People’s code of practice indicates this same expectation for its members.
* , even for the smallest voluntary organisation.
Accessible methods of information provision
In the previous table it can be seen that a significant number of service users indicated that they did not know about key organisations that would be helpful.
In exploring the reasons for this, many in the study commented that they needed information provision to be proactive - to be told that it exists. They also expressed frustration when information was not in a format that was accessible to them. 
It was therefore decided to explore which formats were most commonly accessible, so that organisations could target their material accordingly. The following table rates a number of common ways of obtaining information by their accessibility. Cassette tape was not included because it is a format becoming obsolete.

Method	% who could 
access format
Braille	Adults 5 %, children 50 %
Standard print	13 %
Send / receive text via mobile phone	30 %
Computer (internet, email and documents)	52 %
Mobile phone (make & receive calls)	59 %
Large print	68 %
Regular audio CD (not DAISY format)	91 %

Table 4: Accessibility to visually impaired people of various methods of providing information
“Giving me a whole load of written literature was no use to me. Don’t they know I can’t read? They found that out when they tested my eyes! If the information was on CD I could keep going back to it.”
o Analysis & commentary
These figures show that the most popular methods of accessing information were large print and audio CD. Other approaches are also appropriate for a growing number of visually impaired people. It can be seen that no single format will meet the needs of all users. It is therefore necessary to offer alternatives, and to keep a record of the patient / clients preferred format for future use. 
“Why does the eye clinic send out appointment letters that are in such small print? They know I can’t see well – they are my eye clinic!”
For a fuller analysis of these figures, and guidance about when each format is most suitable, see Selecting the most accessible information formats.
o Comparison with relevant standards & good practice (see References)
* RNIB’s “See it Right” guidelines pack for service providers is recognised as being the leading good practice source about this topic.
* All providers of goods or services have a legal duty to provide information in accessible formats (as “reasonable adjustments”) under the terms of the Disability Discrimination Act 1995. It may be supposed that an organisation whose primary function is to provide services for visually impaired people would be reasonably expected to comply particularly effectively.
* The National Association of Local Societies for Visually Impaired People’s code of practice indicates this same expectation for its members, even for the smallest voluntary organisation.
Knowledge and use of common services
Groups were asked which of these services they had received:

Service	% who reported 
use of service
Support at an eye clinic (ECLO)	43 %
Benefits advice	45 %
Rehabilitation	48 %
Low vision aid	73 %

Table 5: Usage of common services
o Analysis & commentary
This table shows that three quarters of those surveyed made use of some kind of low vision aid, though not all were obtained through a Low Vision Clinic. The commonest form of LVA was a hand magnifier, some of which were illuminated. CCTV electronic magnification systems were used by a few people. Hardly any had come across distance telescopes or spectacle mounted close working magnification, both of which can raise levels of independence significantly for those that can use them effectively.
The table also shows that less than half of those interviewed had received benefits advice or rehabilitation or the support of an ECLO. 
“On holiday I met a retired rehabilitation worker, and she showed me lots of useful things, such as how to be guided safely down a flight of stairs – lots of little things that I wish someone had shown me and my husband before.”
Referring back to the table showing user awareness of service provider organisations (Table 3), this lack of take-up can be deduced to be mainly because those surveyed did not know of their existence, rather than because these services were not required.
“Specialist workers for people with sight loss in Social Care seem very overstretched, with huge catchment areas and enormous numbers of clients on their books. More staff with the time to spend with each person has got to be part of the answer.”
ECLO stands for Eye Clinic Liaison Officer – an eye clinic based post whose role is to act as a bridge between medical diagnosis and treatment, and the instigation of social care and support. Ideally a patient would be referred directly to an ECLO immediately following a diagnosis, especially if this is a poor prognosis. A large number of those who attended a focus group complained that they felt insensitively treated by ophthalmologists at this point. Those who saw an ECLO felt they had received some timely emotional support, and gained hope that even if nothing could be done medically, there were support services and solutions to minimise the impact of sight loss.
The likely reason that less than half those surveyed were seen by an ECLO is their patchy availability. The larger hospitals have them, but only one is full time, so patients will slip through the net. Those eye hospitals that operate satellite ophthalmic clinics do not provide an ECLO at these sites, so these patients also miss out.
For a list of eye hospitals serving County Durham and ECLO provision at each see Appendix C.
o Comparison with relevant standards & good practice (see References)
*  “Patients' rating of the quality of their NHS care will affect hospitals' and GPs' funding in England in the future.” Our vision for primary and community care (the Darzi NHS review) 2008.
* The National Assistance Act 1948 places a statutory duty upon local authorities to provide information about services for visually impaired people. This extends beyond services provided directly by the council to all relevant services from any provider.
* The NHS and Community care Act 1990 requires local authorities to assess the needs of those known to have a disability, and to provide those services irrespective of registration.
Knowledge of common equipment
Respondents were asked if they knew of the existence of three items of equipment or service. 

Service / equipment	% who reported knowledge 
of this item
Free telephone Directory Enquiries (195)	50 %
Signature guide	66 %
Task lamp	57 %
Knowledge of where to obtain 
specialist equipment	80 %

Table 6: Knowledge of commonly used equipment
o Analysis & commentary
These three items were chosen as sample indicators to gain a snapshot of respondents’ knowledge of items widely found to be helpful, and because they are free or low cost. As such, they represent simple ways to improve independence for many visually impaired people.
The fact that between one third and one half of those surveyed did not know about these is surprising, and suggests a gap in communicating their existence which is not often found in other areas (see Network 1000 survey – in Recommended Reading). This tends to reinforce the other findings about poor provision of information.
“I went to Birmingham to stay with some relatives. They look me to a local resource centre. 
It was like an Aladdin’s cave – I had no idea there were so many gadgets to help – most of them really simple and cheap. Why didn’t anybody in Durham tell me about these things?”
o Comparison with relevant standards & good practice (see References)
* The local authority has a duty to provide information about specialist equipment to people known to have a disability (such as visual impairment). This duty is not dependent on whether the person is registered, and is not limited to its short list of items it is willing to fund. (National Assistance Act 1948 section 29)
* The National Association of Local Societies for Visually Impaired People (NALSVI) has core service standards. Core Standard 5 indicates the expectations on its members to provide minimum levels of information and demonstration facilities for equipment.
“I don’t understand why the quality of services we get varies so much from one eye clinic to another, or from one district to another. 
Aren’t standards supposed to stop it being patchy like this? – it doesn’t seem fair.”
The benefit of contact with an ECLO
During group discussions it seemed that a pattern was emerging to suggest service knowledge and take-up was more likely if the individual had received the benefit of contact with an Eye Clinic Liaison Officer (ECLO).
To test this theory, the following table was constructed from the data collected during the research.

Service awareness or usage	% who had NOT 
seen an ECLO	% who had 
seen an ECLO
Benefits advice	24	80
Blind Life in Durham (knowledge of)	32	44
195 free directory enquiries service (knowledge of)	36	68
Rehabilitation (service received)	47	48
LVA (usage)	60	90
County Durham Society 
for the Blind and Partially Sighted (usage)	60	68
Specialist equipment (knowledge of)	72	90
Adult & Community Services / SSD (knowledge of)	72	84

Table 7: Effect of contact with an ECLO on knowledge of common equipment and services
o Analysis & commentary
This data shows that contact with an ECLO has a marked effect on the awareness and usage of follow-on services. In every case, awareness or take up of services was greater. In some examples improvement was dramatic.
The provision of benefits advice increased more than threefold, which has significant implications for a client group where poverty is much higher than for the population at large (RNIB). It would also seem that those who get to see an ECLO are much more likely to be prescribed and use a low vision aid.
“I felt I was being really badly treated, so I asked my GP if I could be referred to another eye clinic. He sent me to Sunderland, and when I got there I had everything that I should have got before. I was treated with respect. When I saw the ophthalmologist I thought they were going to say “We can’t do anything for you, don’t come back” just like the previous place.
But no, I was referred to the worker from Action for Blind People, and they treated me marvellously. It was wonderful: She listened; she said ‘Try this, do that, come and see me again’. It changed my whole outlook.”
These figures suggest that the opportunity to access the services of an ECLO is likely to improve the independence of people losing their vision, as they are better equipped to know about and choose the follow-up services they require. In group discussions, it became clear that preservation of confidence and hope was a key factor in determining which people took up services and were willing to commit to rehabilitation.
o Comparison with relevant standards & good practice (see References)
* One of the values made explicit in the UK Vision Strategy is “Person-centred delivery of excellent services and support in the most appropriate way for each individual”.
* The Commission for Social Care Inspection (CSCI) are using the 7 outcome measures defined in Our Health, Our Care, Our Say. These include: Improved emotional well-being and Increased choice and control (see Recommended Reading).
* According to Local Authority Circular 93(10), social services authorities are required to provide "facilities for social rehabilitation and adjustment to disability." They are also required to provide "such advice and support as may be needed for people in their own homes or elsewhere". This has been deemed to include counselling.
Children and young people
A special focus group was set up to hear from young people who were sight impaired. This met at Belmont School, which has a special unit specifically for visually impaired children of secondary age attached to the main school. The young people who volunteered to take part were in the age range 12 – 15, of both sexes. Parents were invited to attend, but none took up this offer, perhaps because the distances involved were considerable – the pupils came from all corners of the county.
Although most of them had been born with sight problems, many had quite recent experiences as service users, especially of eye clinics.
Perhaps surprisingly, all of the young people interviewed echoed the initial comments from the adult groups. They too chose to start the discussion by expressing concerns about how insensitively they were treated by some ophthalmologists.
In relation to knowledge of service providers, most knew of low vision clinics and social services. However, they were vague when asked about voluntary organisations other than RNIB, which supplied much of their specialist equipment through the school.
All the young people knew about the children’s activities provided by Action for Blind People in the North East (Actionnaires). They rated these highly – all had participated at least once.
Half of them used braille. This is still a widely used communication method for children who the school referred to as Educationally Blind. In practice this meant those whose sight was absent or was too poor to use visual methods of communication such as large print. This is in marked contrast to the adults surveyed, where only 5 % used braille.
It is difficult to draw more meaningful conclusions from such a small sample. In many ways the children are well provided for by staff who well understand their needs. But this is a protected environment where this could be expected. The children said all their friends were school friends. They lived some distance from each other (except 2 sisters) and all said they did not have any sighted friends living nearby. There may well be a need to do some work here, or the young people may have difficulty integrating with society when they leave school.

Summary of findings
Common themes quickly emerged whilst conducting the focus groups. These were:
* The lack of emotional support provided at diagnosis
* The apparent lack of information about services
* The accessibility of information that was available
“It’s about the quality of communication. It might be matter of fact to them that you are going blind, but it’s a big shock for you. It could be done more sensitively.”
What also became rapidly apparent during these discussions were these matters:
* A very poor grasp of the range of service providers and what they can offer
* The lack of knowledge about services commonly used by visually impaired people nationally
* The absence of awareness of simple equipment to make life easier or promote independence
* An almost complete ignorance about how rehabilitation training might improve independence.
Clearly these findings are not unrelated to service users experiences about the availability of information noted above.
Aligning with the key values
In the government white paper “Our Health, Our Care, Our Say” (see Recommended Reading) the following 7 outcomes are set out as key values for health and social care provision:
1. Improved health and emotional well-being
2. Improved quality of life
3. Making a positive contribution
4. Increased choice and control
5. Freedom from discrimination or harassment
6. Economic well-being
7. Maintaining personal dignity and respect.
Many of the findings from service users in this report directly touch on their desire to see these principles upheld in practical ways that affect their lives.

The following sections focus on how to address these matters.

The way forward
The changing context for service delivery
This survey has been commissioned at a significant point in time. Major changes can be predicted in both the level of demand for services, and the manner in which provision of health and social care will alter.
Firstly, it is widely predicted that there will be a rising number of visually impaired people requiring services. These people will mostly be suffering from age-related, degenerative eye conditions. Most of them won’t be blind in the traditional sense: they will present a range of visual impairments which may be more complex or subtle to manage than complete lack of sight. They will be at risk, both physically (such as when trying to cross a road or cope safely in the kitchen), and also at risk of social isolation and depression. They will live longer, so may need support for a greater period. Their expectations may well be higher too: the generation who gratefully accept any help offered, no matter how limited, is giving way to a population who know their rights, and are not so slow to demand them.
At the same time, several recent or proposed changes in the fields of social policy and the health and social care framework will change the landscape in which these growing demands will be expected to be delivered.
For example, the government has announced its intention to introduce a Single Equality Bill, which may well put the needs of older and disabled people on a stronger footing.
The Darzi health review predicts significant changes to the NHS, with the intention to make healthcare provision much more accountable to patients. The Putting People First framework for adult care announced in December 2007 will lead to large changes in the provision of care in England (see Recommended Reading). We are already seeing an impetus to realise the practical application of self-directed adult care – often referred to as the personalisation agenda.
The drive to deliver statutory health and social care provision in a more unified manner continues apace.
As with most changes, those taking place because of policy developments are both a threat and an opportunity for the way services for people who are visually impaired are provided, and the priority they are given.
The threat is to again overlook the implications of changes to a client group who have been poorly represented before. The introduction of community care practices in the 1990s for example, is generally recognised to have marginalised people with sight loss, because their needs have not fitted well with eligibility criteria designed for other types of need. In spite of the rhetoric, there is little evidence of serious attempts at prevention through early intervention. Most people with visual loss have degenerative conditions, yet rehabilitation is too frequently offered after confidence and independence is lost, when is it more difficult to retrieve. Such opportunities seem squeezed by focus on current risks that might have been foreseen.
This is the context in which statutory and voluntary organisations for visually impaired people have to frame their planning and service delivery.
This survey can play its part by indicating those aspects which service users see as the most important in their lives, so that limited resources can be targeted accordingly.
Selecting the most accessible information formats
One of the key difficulties that visually impaired people experience is limited access to information. The findings of this survey bear this out graphically.
The nature of a visual disability is such that people cannot easily read things for themselves, or be aware of notices or leaflets on display. So they will often not learn of something unless they are told about it. 
“How can you ask for something if you don’t know it exists?”
The key to ensuring people get hold of information, rather than just producing it and assuming it will reach its intended audience, lies in how the information is disseminated. The principle to follow is that the information won’t just be picked up or asked for: it has to be pro-actively taken to the intended recipients. Some practical suggestions about how this can be achieved are given in the Recommendations.
“All these organisations who claim to want to help would be better at it if they put themselves in the position of someone who has recently found out they have serious sight loss.
They should ask themselves how they think they would be able to find out about their set-up if it happened to them.”
The following information reflects on the findings in Table 4 and gives some pointers to the selection of appropriate formats based on the type of material to be communicated.
In this survey, the most accessible means of providing information were found to be large print and audio CD, but it also became clear that other approaches are also appropriate for a growing number of visually impaired people.
Phone calls and email
Some communication formats have come to the fore as technology adapts to the needs of visually impaired people: from the data in Table 4, about one third of those surveyed would find a call to their mobile (or home) phone a satisfactory method of learning about eye clinic appointments, for example. More than half may now prefer an email. Both of these approaches could be described as “reasonable adjustments” that a service provider could arrange, quoting the language of the Disability Discrimination Act, which is mandatory for any organisation providing goods or services.
Large print
In this instance, large print should be taken to mean:
 16 pt bold in a simple font like Arial, Tahoma or Calibri
Text read onto an audio CD would need to be broken down into numbered tracks, each not more than 5 minutes long. The first track should consist of the contents with their associated track numbers, so that a listener can quickly find their way to a desired section without having to listen all the way through. This replicates how sighted people access information.
Large print, email and the telephone best lend themselves to short items of information which are personal to one individual. Examples include appointments or bills.
CDs, large print, and documents on line or CD (in MS Word format, not pdf) are most suitable for longer items that many will wish to access, such as a booklet about coming into hospital, or the operation of the Direct Payments scheme. CDs will require re-recording every time the print equivalent is updated.
Standard size print
If sight impairment has led to registration, it is hardly surprising that so few can read standard size print: inability to read 12 pt print is one of the qualifying tests for services such as talking books.
Braille
Braille has always been a minority format, most used by those who have been blind for a long time and typically lost their vision early on in life, or who have always been blind. It is unlikely that someone losing their vision will know braille, especially during the first few months. This means it is a marginal format, and not suited for those who sight loss is fairly recent.
Which format is best?
The overall message here is that service users have a right to accessible information, in the format of their choice. Depending on the application, it may be that there is no one solution suitable for all, so individual preferences need to be recorded and catered for.
* RNIB’s “See it Right” pack for information providers is an excellent source of information about this topic.
Websites as a source of information
For those visually impaired people who can use a computer, the internet is the most liberating and empowering of all the methods of accessing information. Users can find out what they want, when they want, from any online source they choose. This is in marked contrast to all other sources of information, where provider organisations decide what they will and will not publish, and whether or not this is available in an accessible format.
52 % of those surveyed could use a computer to access the internet, and this percentage is bound to rise. Members of Blind Life in Durham can request computer support and advice at their homes, and County Durham Society for the Blind and Partially Sighted provides a computer mentoring scheme to equip people with knowledge about the availability of specialist software.
There is a continually improving range of software and hardware solutions which improve accessibility at prices which are largely falling.
However, most of the websites of interest to visually impaired people living in County Durham ranged from those which were completely devoid of service information (The county council and all the eye clinics) to those which were poorly executed and lacking in sufficient up to date information (some of the voluntary organisations).
See Appendix D for a review of the service provider websites.

Recommendations
These recommendations are based on the key issues that users expressed during the focus group discussions, and offer some pointers to how they should be addressed.
They have been segmented into those recommendations which apply to all service providers, and then those which apply separately to health, to social services and to the voluntary sector.
Recommendations for all service providers
Information provision
There is significant work to be done to increase the numbers of visually impaired people who have knowledge of the range of services available for them.
Service users asked for:
* Commission the talking newspaper to produce an indexed Audio CD every six months containing key service options, and give it away free at eye clinics and all major service providers.
* Provide uncomplicated information, unified across all providers, in a range of accessible formats; kept up to date; and utilising pro-active methods to get it to the people who need it at an early stage.
* Devise a Quick Guide: a one page list of the most commonly used services and where to get them, with options if these exist. List the services alphabetically by name, not by provider (example available from the author on request). Place this in GP surgeries, insert it in large print library books when they are issued, distribute it through carer groups, display it in post offices and at day centres, give it out at eye clinics and high street optometrists.
* Publish accessible descriptions of the pathways that patients are likely to follow and “what should happen next” guides for staff and service users alike
* Provide a link to the same information on all service provider websites, hosting it on one of them.
* Obtain specialist professional help to design accessible websites
* All agencies to log users preferred accessible format and provide all communications accordingly (appointments / letters / service info etc)
* Find ways to update existing service users as new services develop
“All these organisations don’t seem to know, or at least don’t tell you, about what the others offer. It should be that whatever setup you go to, they will tell you about what everyone can do for you. I want just one contact place that can tell you everything.”
Access to services
* Set up an integrated phone helpline / gateway publicised in all the above locations
* Adopt the principle of accessing any gateway will lead to an integrated response to need (collaborate don’t compete)
* Find mechanisms to update existing service users who have predictable vision deterioration
* Make it much easier for parents to identify sources of support if they have a visually impaired child
* Review the social needs of visually impaired children with a view to promoting integration
* Locate or if necessary create a counselling service for people who reaction to sight loss requires more than a few informal discussions
Collaboration
* All providers to meet regularly to promote cross-service liaison and understanding
* A pathways map should be available for both professionals and users
* Address the "what should happen next?" issue – put more power into user’s hands
User consultation
* Involve new service users in consultation and service design and monitoring, not those who experienced sight loss long ago
Recommendations for the Health Service
“It was the case of just being transferred from one person to the other at the hospital, and even though I was half expecting bad news, what I felt was lacking was any kind of emotional support. There was “Do you realise this isn’t curable” and “You will eventually lose your sight” but then that was it, there was no kind of emotional support offered: I just had to work that through on my own. 
I would have liked to have been able to talk about my feelings about it, and how it was affecting me personally. You are given the facts, but not the opportunity to deal with it emotionally. I do feel they should look at you as a whole person, not just a pair of eyes. They should at least give you the opportunity to accept being referred for support.”
Service users asked for:
* Increase the number of ECLOs so that a full time service is available at every eye clinic that serves County Durham residents
* Require GPs to take a more proactive interest in the holistic needs of their visually impaired patients (why do they get form CVI if it’s not for this purpose?)
* Require high street optometrists to take a more proactive interest in the holistic needs of their visually impaired patients as part of their duty of care. Implement form LVL (Low Vision Leaflet) when made available by the local authority
* User consultation at eye clinics about modes of service delivery
* Clinic appointments in large print
* Training for ophthalmologists in how to break bad news (PCT to write this into their ophthalmology contracts, and involve users in monitoring this)
* Ophthalmologists increase the certification rates (assuming patient consent)
* Ophthalmologists use form RVI (Referral for Visual Impairment) if there is some reason why a patient cannot or will not be certified for registration
Recommendations for Durham County Council
Service users asked for:
* Raised awareness amongst visually impaired people and its own staff that the local authority has statutory duties to inform, register, assess and provide for them. Informing visually impaired people of services and entitlements is a legal requirement (National Assistance Act 1948).
* Confusion about the name of the providing department should be reviewed
* The council website should include a reference to its statutory duties and the services it can provide for this client group
* Increase the number of rehabilitation workers, or delegate those tasks that do not require a qualified worker to provide first line cover. (Could be contracted out).
* Explore setting up small groups for people whose sight loss is recent, to provide a mix of emotional support, confidence building and knowledge of equipment and services. (The author has a well-tried model as an example if required).
* Introduce form LVL to promote early referrals via high street optometrists, and consider its use with voluntary agencies such as Help the Aged or British Legion.
* Offer Direct Payment options to all visually impaired clients who are assessed for services (a legal requirement), and explore how this system is used effectively in other parts of the UK.
Recommendations for the Voluntary Sector
Service users asked for:
*  A campaigning function to press for better statutory services
* An advocate service for individuals when statutory services are imperfect
* Improved accessibility to resources and equipment
* Forward looking organisations that can work well together.
“Thank God for the 3 organisations who are putting this report together – all they do for us.”
Appendices
Appendix A: Acknowledgements
The work described in this report could not have taken place without considerable help and cooperation.
Thanks must first go to all the blind and partially sighted people who gave up their time to contribute their views and ideas. For some, re-living their experiences was painful and distressing, and the author hopes that the comments that they shared have been accurately represented here.
A considerable amount of administration was carried out by Margaret Welch of Blind Life in Durham, whose efficiency and commitment made this work possible. This extended to scouring the streets of Barnard Castle to find suitable people for the final focus group when other recruitment methods had failed! Guidance and encouragement from Jim Welch was also essential to the completion of this work.
The partnership members are thanked for the assistance they gave.
Thanks are also due to Retina Winward, Leigh Nicholson and Andrew Nuttall of Durham County Council and Karen Barge of Belmont School, as well as the staff of each day centre who made their premises available to host the focus groups.
This work was undertaken using a grant obtained from the Awards for All Lottery fund, for which we are most grateful.
Appendix B: Members of the Durham Sight Loss Survey Partnership
This research was commissioned by Durham Sight Loss Survey Partnership. This is formed of three voluntary organisations providing services for visually impaired people in the county, as detailed below. The work was supported by a Community Development Officer from Durham County Council.
Action for Blind People North East
This is part of a national charity which has a regional office to offer specific services to people living in north east England. In 2009 it will become an associate charity of RNIB.
Garland House, 144-146 Borough Road, Middlesbrough TS1 2EP
Tel: 01642 233 439
Email: middlesbrough@actionforblindpeople.org.uk
Website: www.actionforblindpeople.org.uk
Blind Life in Durham
8 Brookside Avenue, Crook, Co. Durham DL15 8LB
Tel: 01388 763501
Email: info@blindlifeindurham.org.uk
Website: www.blindlifeindurham.org.uk
County Durham Society for the Blind and Partially Sighted
Oswald Court Resource Centre, 1 Church Lane, Durham City. DH1 3HF
Tel: 0191 386 8175
Email: cdsvh@aol.com
Website: www.cdsbps.co.uk
Appendix C: Eye Hospitals that serve County Durham residents
Sunderland Eye Infirmary
* ECLO 3 clinics / week
* Low Vision Clinic
Runs a satellite clinic at University Hospital, North Durham
* ECLO: 2 clinics / month
* Low Vision Clinic
Darlington Memorial Hospital
* ECLO: 1 day / week
* Low Vision Clinic
Runs a satellite clinic at Bishop Auckland 
* ECLO: none
Runs a satellite clinic at University Hospital, North Durham
* ECLO: none
Royal Victoria Infirmary, Newcastle
* ECLO: 5 days / week (two staff – one full time, one part time)
* Low vision Clinic
Runs a satellite clinic at Shotley Bridge
* ECLO: none
Appendix D: Review of service provider websites
Durham County Council, the eye hospitals and all the voluntary organisations that provide services to this client group have websites that suggest they are intended to provide information for their users.
This is what service users to these sites found in practice:
* The Action for Blind People website is a model of good design and content, though being a national organisation it does lack any localised information.
* The 4 eye hospitals that serve County Durham residents generally have no online information for visually impaired patients, and their design shows no appreciation that an eye hospital website might actually be consulted by those with a sight problem.
* The Durham County Council website appears to have no information at all about services for visually impaired people, either those it provides itself or those offered by third parties. This contravenes the spirit if not the letter of the National Assistance Act 1948, which requires local authorities to provide information about both in house and third party services for people with sight loss.
All of the other websites need significant attention to ensure they are consistently accessible, give sufficient accurate information, and are up to date.
* The County Durham Society for the Blind and Partially Sighted website has a non-standard interface and is very sparse about the details it includes. For example, it lists some services but does not explain who is eligible, whether there is a cost, and how to access it. Including these extra details will require a search function to be added.
* The Blind Life in Durham website is better designed, but still has accessibility problems, especially for partially sighted users, and also needs more regular updating. It lacks a search function.
* RNIB’s website is difficult to navigate and provides far too much information on each page. The search facilities are dysfunctional.
Appendix E: References
The extracts noted here are directly referenced in the text of this report. See Recommended Reading for key documents also mentioned in the report.
Research commissioned by the BBC about the NHS 60 years on
ICM Research questioned adults across the UK extensively about their attitudes to the health service. Details can be read here (PDF 111 KB).
A majority of those questioned (85%) agreed that counselling for depression and anxiety should be free on the NHS [table 1]. See http://www.bbc.co.uk/pressoffice/pressreleases/stories/2008/06_june/30/nhs.shtml
National Assistance Act 1948, section 29
Contrary to some belief, this act is still in force and legislates for many of the key duties that local authorities must provide for visually impaired adults. These particularly include registration, assessment, rehabilitation and the provision of information about services available from any source, not just those provided by the local authority itself. The Act also makes it clear that provision of assessment, information and services is not dependent on registration: these duties apply to all of those with a disability (including visually impaired people).
The entire Act and its subsequent revisions is available on line at http://www.opsi.gov.uk/RevisedStatutes/Acts/ukpga/1948/cukpga_19480029_en_1
National Assistance Act 1948, section 30
This section empowers a local authority to employ a voluntary agent to carry out some or all of the functions of section 29, and carry them out in the same manner. The local authority retains the statutory responsibility to ensure these are adequately carried out.
The entire Act and its subsequent revisions is available on line at http://www.opsi.gov.uk/RevisedStatutes/Acts/ukpga/1948/cukpga_19480029_en_1
NALSVI Core Services Standards
National Association of Local Societies for Visually Impaired People.
This document is not available on line at present, but can be obtained from NALSVI. Two elements are reprinted here for ease of access. There are 3 levels to the standards. Level 1 sets the minimum required for societies with limited resources including staff and uncertain funding. Level 1 should be considered as adequate. Level 2 assumes a society with greater resources than level 1 with secure funding and an established management structure.
These extracts are from level 1 standards.
Core Service 1: Information
A local society should provide information for visually impaired people and their carers at the earliest opportunity. This might be when requested to give information whether before or after a person is registered; when a person is certified partially sighted or blind at the eye clinic or when a person's name has been entered on the local authority register. The information should include
* Details of the registration and assessment procedure and how to access rehabilitation training and counselling services.
* Details of local and national organisations that provide services for visually impaired people and including, of course, the services of the local society.
* Details of low vision services.
* Travel concessions
* Audio description 
* Library and talking book services
* Access groups
(There is more detail not reproduced here).
Core Service 5: Display & Demonstrate Equipment
* A local society should have on display a wide range of specialist equipment for visually impaired people.
* Trained staff or trained volunteers should be available at well publicised and regular times to demonstrate equipment.
* Equipment should be maintained and reviewed regularly by a designated person.
* Equipment can be purchased or ordered at the point of demonstration.
* The demonstration area should be accessible to elderly people and wheelchair users and must have adequate lighting.
(There is more detail not reproduced here).
Appendix F: Recommended reading
For those less familiar with current developments in policy and practice, the following two key documents are highly recommended.
UK Vision Strategy: setting the direction for eye health and sight loss services. VISION 2020 UK April 2008.
The major strategy has been developed by a wide range of individuals from across health and social care bodies, voluntary organisations, service users and professional groups. The development has been supported by representation from all the UK governments.
Available to download from RNIB’s website at www.rnib.org.uk
Good Practice in Sight. RNIB September 2008
RNIB's 'Good practice in sight' guide is designed to assist Local Authorities and their Adult Social Services departments in England achieve best levels of service delivery for blind and partially sighted adults.
The Association of Directors of Adult Social Services (ADASS) and the Department of Health have both endorsed the guide, which provides benchmarks with analysis. It also shows how this can link to monitoring practices currently laid out by the CSCI, and other national standards current or pending.
 From RNIB Customer Services on 0845 702 3153 (Order PR12220). A pdf and Word version can be downloaded from www.rnib.org.uk/goodpractice 
The following documents also form the background which is shaping current policy and practice:
A Question of Independence. RNIB 2006
In 2004/5 RNIB and the AMD Alliance UK conducted a survey of low vision service providers and PCTs to obtain an up-to-date picture of low vision and rehabilitation services in the UK. The focus of the survey was on the type and range of services provided, the level of co-operation between providers and how they perceive the quality of services in their area.
Available to download from RNIB’s website at www.rnib.org.uk
NALSVI Core Service Standards. National Association of Local Societies for Visually Impaired People. Available from NALSVI, PO Box 823, Doncaster DN1 9AQ or tel. 01302 571888.
National Eye Health Epidemiological Model (NEHEM). www.eyehealthmodel.org.uk. Public Health Action Support Team (PHAST) at Imperial College, London.
Lunched October 2008, this online service makes data on the prevalence of four common eye conditions freely available for the first time. An invaluable tool for those involved in the commissioning and provision of local eye care services in the UK. It provides data on the prevalence of glaucoma, cataract, age-related macular degeneration and low vision. Based on epidemiological and population studies, the data is split by age, gender and geographical or Primary Care Trust (PCT) area.
Network 1000 survey 1: Opinions and circumstances of visually impaired people in Great Britain. Victar, Birmingham University, August 2006
Downloadable from www.vision2020uk.org.uk
Network 1000 Survey 2: Access to information, services and support for people with visual impairment. Victar, Birmingham University, October 2008
www.vision2020uk.org.uk/library.asp?libraryID=1316&section=000100050005
NHS Next Stage Review: Our vision for primary and community care. Lord Darzi, Dept of Health, July 2008
This document sets out the Department of Health’s vision for primary and community care services and a strategy to support patients and the public, clinicians and the local NHS in achieving continuous improvements in the quality of services. Downloadable from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085937
Our health, our care, our say: a new direction for community services. Dept of Health 2006
This White Paper sets a new direction for the whole health and social care system. It confirms the vision set out in the Department of Health Green Paper, Independence, Well-being and Choice. There will be a radical and sustained shift in the way in which services are delivered, ensuring that they are more personalised and that they fit into people's busy lives. We will give people a stronger voice so that they are the major drivers of service improvement. Downloadable from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453
Putting people first: a shared vision and commitment to the transformation of adult social care. Dept of Health December 2007
This ministerial concordat sets out the shared aims and values which will guide the transformation of adult social care, and recognises that the sector will work across agendas with users and carers to transform people’s experience of local support and services. Downloadable from http://www.dh.gov.uk/en/PUBLICATIONSANDSTATISTICS/PUBLICATIONS/PUBLICATIONSPOLICYANDguidance/dh_081118
Progress in Sight: National Standards of Social Care for Visually Impaired Adults. Association of Directors of Social Services (2002)
These are the national standards for services provided by social services departments or organisations providing such services on their behalf. The 16 standards provide a framework against which a local authority can monitor and measure its own performance. They require the development of action plans where services fall below the standards laid out in the document, but guidance on this is given. Downloadable from http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_progressinsight.hcsp
Recommended Standards for Low Vision Services. NHS Eyecare Services Programme (2007)
Available to download from RNIB’s website at www.rnib.org.uk
RNIB See it Right guidelines. RNIB revised 2007
For information about obtaining the book and CD Rom, and to view a simple checklist, visit http://www.rnib.org.uk/xpedio/groups/public/documents/PublicWebsite/public_seeitright.hcsp
Appendix G: About the author
Richard Cox is an independent consultant and trainer specialising in advising those who provide services that impact on the lives of visually impaired people. Initially qualifying as a social worker and as a rehabilitation worker (visual impairment), he began his career by developing a range of innovative direct services to those losing their vision. He pioneered the Insight Service, which uses a groupwork approach to meet the emotional as well as the practical needs of people whose sight loss is recent.
After working as RNIBs National Training Consultant, he moved to Birmingham City University, where he became Course Director charged with training rehabilitation workers.
Richard has himself been partially sighted from birth, and has made many appearances on radio 4’s In Touch programme. He worked closely with the Department of Health to assist in the last Inspection of Services, and to design a revised approach to the identification and registration processes. He is a founder and continuing member of the Association of Directors of Social Services sensory impairment sub group, and regularly works with local authorities and other service providers to review and improve their services.
Richard’s consultancy is called Seeing Sense, and he can be contacted at richardcox@bigfoot.com


Obtaining copies of this report
Copies of the full report can be downloaded from www.blindlifeindurham.org.uk as an acrobat file (pdf), a Word document (doc) in standard size print, a Word document (doc) in large print, a plain text file (.txt) or as an audio version (MP3). The executive summary can be downloaded from www.cdsbps.co.uk.
A CD is also available containing all these versions from Blind life in Durham and County Durham Society for the Blind and Partially Sighted. See Appendix E for contact details.





 


Page 2	Taking a blind bit of notice in County Durham 

Taking a blind bit of notice in County Durham 	Page 1