BME and Sight Loss Day Conference Report Friday 18th February, 2005 Key Speakers and Topics Eye Conditions and people from BME communities Dr Narayan Manchester Royal Eye Hospital Spreading the Word - Research into Action for families from BME communities Joanna Vidakovic and Joanne Aungier Henshaws Society for Blind People Improving the Access of Ethnic Minority Visually Impaired People to Appropriate Services: Building a Supported Community Referral System in Partnership with Agencies in Birmingham. (Thomas Pocklington Research) Professor Mark Johnson De Montfort University, Leicester Good practice in Leicester - Differences in culture, religion and language Avtar Baghara and Jo Vavasour VISTA Society for the Blind "Enlightenment" - a short film made by Asian blind people Mahesh Laheru Waltham Forest Asian Blind Association Why do you need a specialist service? Jim Moran, LVSB Service user perspective Tahira Khan- Sindhu BME and Sight Loss Day Conference Report Open and welcome by Dianne Asher, Chief Executive "It is my pleasure to welcome everyone here today. I must say that you are privileged to be sitting in this room as there was a waiting list of over 80 more delegates who wanted to attend. Today's event would not have been possible without the support of Edward Childs of Chorlton Insight Group who secured the funding for today and has meant that we are able to offer it free of charge to delegates. It was Edward who asked the pointed question "Why do no Asian families access services properly?" It was that question which eventually led to the topic of today's conference. I'd also like to thank Terry Burgess from Manchester City Council and Younus Khan of RNIB for their involvement in the conference. There will be a post conference report provided to all delegates and made available on the website and I hope that everyone here will get as much out of the day as possible." Caryl Agard, Chairman, welcomed delegates and explained his interest in today's conference and a little more about his work as Chair of One Northwest. "In terms of research in Greater Manchester, visual impairment is really not high on the agenda from a BME dynamic. One Northwest has two regional networks, one generic and one BME. Their function is to pull together an infrastructure of BME communities. I have a dual role today, firstly to raise the profile of BME issues in the North West and to act as a bridge between the BME community and VI organisations, voluntary and statutory providers. I am also here to learn. It is an opportunity to have a real conversation about real issues and it will be great to have such a lively exchange of information and sharing of ideas. Caryl Agard then introduced the first speaker. Eye conditions & people from BME communities Dr Narayan, Manchester Royal Eye Hospital "Good morning. My name is Doctor Narayan. I am an associate specialist at Manchester Royal Eye Hospital and have worked there for the last 20 years. My speciality is glaucoma and how this affects the BME community. A key observation is that a squint is most common in African children. The squint can be corrected with patches and glasses, but if you do not treat the eye it can become lazy. Asian children do not seem to like wearing glasses, however, perhaps through a lack of understanding/education about the benefits to their eyesight. " Dr Narayan then shows the audience a model of the eye and describes how it works much like a camera, pointing out the lens, retina and optic nerve. It is quite common for Asian families to not keep their appointment regularly. They also feel the need for a Link Worker as language can be a huge barrier in the hospital setting, particularly amongst the Pakistani community, due to the many languages that are spoken in this country. For adults and older people, the main problem that I come across is cataracts, that is, a cloudy lens. This is usually treated by a nick in the eye, i.e. keyhole surgery and a new artificial lens. You don't go blind with cataracts. However, a Link Worker is often needed to gain consent for this operation. The age at which Asians develop cataracts (about 50 years of age) is significantly different to the age at which Caucasians develop the condition (about 80 years of age). Glaucoma tends to be the most common condition I see at the hospital and most cases can be controlled with the co-operation of the patient. With glaucoma, the pressure goes up in the eye, but there are few symptoms. It is therefore important for people over the age of 60 to have eye tests at their local optician. Often, by the time people come to the hospital they are already blind in one eye. Don't forget that if a person is aged 40 and has glaucoma in their family, then they can claim for free eye tests for the rest of their life. The drugs available for this condition are wonderful now. The only downside is that the treatment is for life and drops have to be administered regularly on time for the rest of a person's life. Laser treatment works for about six months. It has been noted that Afro-Caribbeans get glaucoma more commonly than patients of other ethnic backgrounds. Often people have difficulties with transport and getting to their appointments, such as their field and vision test. There is an important role for Link Workers and interpreters, particularly with older Asian people, as communication is often done by younger members of the family. In terms of Diabetes, there are also more Asian diabetics in the UK than Caucasians. This could be as a result of greater alcohol consumption, lack of exercise and poor diet in the Asian community. It is common to find that a patient from this community would come for one check up and then disappear. Unfortunately, if a patient fails to show up for an appointment twice running the hospital dismisses them. Or, a patient may turn up for four or five laser sessions for their condition and then disappear. As a result, patients go blind needlessly. Patients then get a letter from their GP/Optometrist saying they have gone blind. In the case of insulin diabetics, we can see that as nations become more prosperous the number of insulin diabetics increases. This is the same as in Japan where the nation's wealth increases, their lifestyle changes and as a result more cases of insulin diabetes are recorded. The same is true of India, where up until 40 years ago there were few cases of diabetes. As people's lifestyle changes so too does their health. I think that is all I have to say, but are there any questions?" Audience Question: Do you feel, Dr Narayan, that the onus should be on the hospital to do more? Dr Narayan response "In Greater Manchester, it is true that there is only one Link Worker for the whole of the PCT, which covers a huge area. Today, I'm sure will emphasise the urgent need to have more Asian Link Workers and to ensure that services are made available in ways that are culturally sensitive" Audience question: Dr Narayan, you seem to have identified two key barriers for accessing services: language barriers and non-attendance. Perhaps more needs to be done to practically reduce these key factors? Audience comment: Perhaps a key finding from today's conference would be that there is a case for bidding for funds to the PCT to ask for additional Link Workers. People still don't seem to be aware of the difference between blind and partially sighted and may only be interested in the monetary aspect of registering blind. Audience comment: Speaking on behalf of Oldham PCT, I'd just like to comment that our PCT is a very progressive one. As a result of Tier 2 projects in diabetes within the community, we now feel we have an integrated service where any ethnic minority needs one. Mobile screening units have been in practice for the last two years and I'd just like to know if there are leaflets available from the hospital on eye conditions in alternative formats. Dr Narayan response: Yes, we do have a selection of leaflets available in different languages. But not every language as there are many different languages spoken by BME communities. Audience comment: I would say that there is a real lack of community groups for BME communities in Greater Manchester and that this has highlighted the need for more funding for such groups. For West Indian communities, for example, the church is a major support organisation and it may be that professionals need to use these organisations as a vehicle through which to raise awareness of sight loss. These are the areas in which people might not think to go. Other Comments * Stigma associated with visual impairment. * Lack of clarity around what is meant by blind or partially sighted. * Language difficulties, particularly when patients are attending clinic on their own. * Young relatives are sometimes used as translators which can lead to difficulties and misinterpretation, particularly in relation to medical jargon. * Not accessing available interpreter services. * Expectation that doctors from BME communities will be able to speak more languages than is realistic. * Failure to keep appointments - this can be based on bad experience but can have the effect of reducing the ability to prevent time related blindness. There does not seem to be one common reason for failure to keep appointments. * Failure to maintain medication regime - this can be related to lack of understanding of what is required. * The Patients Charter places the onus on the Primary Care Trust and hospitals to provide support to patients whose first language is not English. * It is not enough to produce information in other languages as this assumes a level of literacy which might not be present. * Need to raise awareness of primary care workers including GP's. Recommendations * Hospital managers need to provide more Link Workers within the hospital environment for initial appointments and follow-up both with consultants and specialist nurses e.g. Glaucoma nurse. * Hospital Patients Forums need to consider the needs of BME ophthalmology patients. * A note of language requirements should be included in the patients' notes to ensure that support is present at each appointment. * Information on eye conditions on tape produced by the RNIB should be available in hospitals and paid for by the PCT. * There needs to be joint work between hospitals and health promotion departments around awareness of eye health. * Health and Social Services organisations need to work together to make BME communities aware of the registration process and Low Vision Aids. This could build upon the work done by Oldham PCT including mobile screening services. This needs to include information of relevant benefits. * Awareness raising needs to go to the locations which are used by BME communities e.g. mosques, cloth shops. * Asian community groups (existing and future) need to have an understanding of what is meant by blindness or partial sight. * Dissemination of Henshaws Handy Guide in Urdu may be helpful in raising awareness particularly around children and visual impairment together with visually impaired parents. Spreading the Word - Research into Action for families from BME communities Joanna Vidakovic and Joanne Aungier, Henshaws Society for Blind People "I am delighted to talk to you today about a project I've been working on for 2 years called Spreading the Word. This project looks at the information needs of families with a visual impairment in BME groups. The Spreading the Word project is a 3-year project funded by the then Home Office, which as I say, looks at the information needs of visually impaired families. For the purpose of this presentation I am going to focus solely on the needs of BME families. In summary, the project did focus on four marginalized family groups: * Families with a visually impaired teenager * Families with a visually impaired child or teenager who has additional disabilities * Families with a visually impaired parent * Families with a visually impaired child or teenager from a Black or Minority Ethnic background. There was a realisation after one year that further research was needed within this fourth family group. In Greater Manchester in 2003, there were 675 0-17 year olds registered blind and partially sighted. The statistics for 2005 will show those numbers from black and ethnic minority backgrounds. 11.5% of our service users in Greater Manchester come from BME backgrounds. In 2001, 12% of the Greater Manchester population was made up by BME communities. In terms of Henshaws Children and Family Service, 28% are from BME backgrounds and the majority of families we researched where from Asian/British Asian backgrounds. This mirrored the wider Greater Manchester community. It is satisfying for Henshaws that since the start of the Spreading the Word Project there has been a 37% increase in service users from BME backgrounds, which is higher than any previous period. This information is taken from our Client Information management system - a comprehensive database of all our service users which records amongst other things each individual's ethnic background. So what were our research objectives for the project? Firstly, to identify and explore the barriers faced by BME families when accessing existing services. Secondly to identify the main information gatherer within BME families. And thirdly, to further explore and evaluate the recommendations made by ethnic minority groups in phase one of the project, which were: * To target families by providing appropriate information services * To provide a translation of information service * To promote and raise awareness of Henshaws The methodologies we used were as follows: * Discussion groups held in Punjabi, Urdu and English * In-depth interviews with professionals An external agency was used to recruit and moderate discussion groups in mother tongue languages and stimulus was used to encourage debate and discussion. Key to research process was using an external moderator who spoke in the mother tongue language of group members. This helped increase service users involvement and confidence in Henshaws. Out of the families that we interviewed: * two thirds of participants were female * the majority had more than one child * 25% had two children with sight problems * 75% of children were registered blind of partially sighted * and a small number of parents were also visually impaired In terms of the professionals: * All worked in the voluntary sector or for the NHS * 80% were from ethnic backgrounds themselves The Main Research findings amongst BME families can be summarised as follows: There was little knowledge of the service providers available. The English-speaking group had a higher awareness of VI organisations than the Urdu and Punjabi speaking groups. We also identified that cultural issues are definitely a barrier to the take up of services. There was a definite stigma about disability amongst Urdu and Punjabi speaking groups. One Punjabi speaking respondent said "but the problem...we people think of a disability as a very big stigma" and another Urdu speaking parent said "I was just praying to Allah to make them better and thinking this was our problem. I have seen if you tell an Asian person that your child has this disability, they will just deny it, they say, 'never'". Parents were on the whole non-proactive in their information gathering and expected information to automatically be sent out to them. However, we found that service providers don't tend to approach BME groups or automatically send out information. Many VI organisations, we discovered, are culturally insensitive and aimed at white British communities. One Punjabi speaking parent succinctly comments, "My child does not have an interest in football. It's more for white children." Another commented: "That put us off at one time, because they (activities) tend to be held in a pub. When you come from a Muslim culture you're not allowed to go near alcohol...I wouldn't feel comfortable to go." Indeed, there was a general lack of religious understanding among service providers. An RNIB employee and parent of VI children commented:" They go into clients' homes and do not have the respect for them. For example, taking their shoes off, as we need a clean carpet to pray on. Training is needed on the different cultures and religions." Language barriers were a common problem. Some parents also described how they felt 'ashamed' of their inability to communicate in English which prevented them from seeking information and clarity of information they had received. One Urdu-speaking parent commented: "Sometimes we can't understand them and we don't go to anyone because we're ashamed. That's why we are behind; we hide things, that's something we should not do." The mother was identified as the primary carer and the father was the information gather within BME families due to his ability to communicate in English and his stronger societal links. One Urdu-speaking parent commented: "Because our lifestyle is different we have to take care of everything, kids, the house, and we don't get time to go out and get information on these things." Instead, face-to-face information provision is favoured - such as an Asian Link Worker. A Punjabi speaking parent commented: "They should appoint a few people from ethnic minorities who can go to our houses, know what our needs are. If an English person comes to us, he doesn't know what we need. But if an ethnic minority person comes, he will know what to do. There are lots of educated Muslims in this country, why don't they appoint them?" Information sharing is done largely through parent support groups who share the same religious and cultural beliefs. Social groups were currently exclusively for Asian children. Links with the Asian communities were made largely through community and religious leaders and there was a need expressed for positive and knowledgeable role models for Asian children with a disability. The English-speaking discussion groups suggested ad hoc translation services. But the Punjabi and Urdu-speaking groups preferred all information to be translated into a variety of languages. The groups identified that the standard of material in translation varies greatly in quality. The Punjabi speaking group could not understand the Punjabi written leaflets they were presented with. Nor could some university-educated professionals understand some of the words in Urdu written leaflets. Parents felt that translated information should use simple, to the point, working language. In terms of the use of pictures in written material, there were mixed views. The English-speaking group saw pictures as a positive image, whilst the Punjabi and Urdu-speaking group saw pictures as being culturally insensitive. Mosques, markets and community shops selling cloth were suggested as effective information points. Joanne Aungier, Children and Family Service Team Leader then went on to discuss how the research findings have been put into action at Henshaws Society for Blind People. "Hi, I'm Joanne Aungier, Team Leader for Henshaws Children and Family Service based here in Greater Manchester. I just want to talk a bit more about what we have done as a result of the Spreading the Word Project. Our Children and Family Service in Greater Manchester has now established two self-help groups. One is based in Bolton and the other here in Old Trafford. Natural leaders have established themselves within these groups and they are largely self-led. In fact, one of the families translated the Handy Guide into Urdu for us and helped us to make the Guide more accessible to this group. We have been sending out information to a whole range of community groups, Mosques, meeting places etc and have managed to convey information in a basic, informative and simple way that has been well received. We now support more ethnic minority families than prior to the project, which is very pleasing for us to see. The forums are informal and it has been important for us to run them on people's own grounds, so to speak. So, for example, guest speakers attend present in the mother tongue of group members. The most common topics requested for the forums are education, disability and benefits and Henshaws has now set up a rolling programme of speakers to address these issues. We have found there to be a high percentage of Muslim families in Bolton who find reading the Koran very difficult due to their visual impairment. So, we have even managed to locate the Koran in Braille and on audiocassette. As far as I know, the person we have found is the only one doing this and it is important to be able to provide this essential information to these families. Henshaws is also now seeking funding for an Asian Link Worker. Our organisation is good at providing information on a need to know basis and our staff do a good job of being informal and friendly and building trust up slowly. So, I think that ends our presentation, but does anyone have any questions?" Comments from the audience I think as well as giving out information in the local press, organisations shouldn't forget the importance of other media such as television and radio - like Asian Network - which many ethnic minority people listen to. These are good ways of getting information across. Question from audience Could you tell me more about what provision you make for Asian children? Joanne Aungier response Our research findings showed that certain activities were not appropriate for children of ethnic minority background. However, on the whole, children did just want to be included in the groups for children that are already up and running. For us, it was important, therefore, to plan activities that were culturally sensitive in which Asian children could be included rather than establish new distinct activities. An example of this would be an activity day where we gave consideration to the food provided. Question from audience Were people of African origin included in the research project and are you planning to provide services for this group? Joanna Vidakovic response Our research sample mirrored the population of Greater Manchester. Although we would eventually like to provide services to all ethnic minority groups, we don't want to run before we can walk and we felt it best to focus on the largest group and set up groups that were well run and that could provide a good model. Joanne Aungier response Henshaws work in this area has been a slow process and has concentrated on predominantly Asian communities. There is a keenness to get it right rather than expand too quickly and raise expectations from other communities (Afro-Caribbean, Somalian, Kurdish) at this stage. There is need to learn from experience before progressing. Recommendations * The language for translations needs to be very simple and proof reading is essential * A breakdown of information in the presentation by local authority areas to be supplied to delegates. * Organisations need to be fully aware of the Asian media network to raise awareness of services. * Activities for families need to be culturally sensitive including location (i.e. not a public house) and food etc. * Take activities to local areas e.g. community centres. * Organisations need to seek feedback from visually impaired children from BME communities on the activities that they want to get involved in. 'Improving the Access of Ethnic Minority Visually Impaired People to Appropriate Services: building a supported community referral system in partnership with agencies in Birmingham" (Thomas Pocklington Research) Professor Mark Johnson De Montfort University, Leicester Prof. Mark Johnson began his presentation speaking in an ethnic minority language. "It is horrible when someone speaks to you in a language you don't understand, especially when that person is in a position of power. I have worked in race and ethnic relations for 25 years and now at the Mary Seacole Research Centre in Birmingham. I am here today to talk about a project supported by the Thomas Pocklington Trust and the Housing Corporation that examines service provision for BME communities with a visual impairment. The aims of the project that we undertook, were three fold: * To raise awareness and develop ways of ensuring that services are more effectively delivered to people from black and minority ethnic (BME) communities with visual impairments (VI) * To raise awareness of sight loss issues and service in black and minority ethnic communities and voluntary sector groups working in those communities * To raise the capacity of (VI) service providers to recognise the specific needs of people from minority ethnic groups, and establish the best ways of meeting these. What soon became apparent to me was that VI issues have been sidelined from the BME agenda and BME issues are largely ignored by VI service providers and organisations. Quite often interested parties are divided into two separate camps, with each group doing their own thing oblivious to the bigger picture. A term I would like to see more of is "ENVI" - ethnic minority visual impairment. Looking at the composition of "English" Health and Social Care Users in 2001 - the census tells us that 13% were from a Minority group. In Birmingham this statistic jumps to 30% of the population who are non-white. The Birmingham visual impairment register shows that roughly 18.5% of visually impaired males were non-white. So, all in all these statistics show that BME groups and VI groups are hardly what you might call a small minority and certainly not groups we can ignore. I personally believe that I have read everything about visual impairment in BME communities and believe me, it did not take long. Reviewing the literature on visual impairment in BME communities, I found there to be a poor quality evidence base. The literature showed that there were high levels of diabetes that lead to an expectation of worse eye health. Something that Dr Narayan touched on earlier in his presentation. Also, that there were raised levels of glaucoma in African Caribbean populations and that cataracts are more common amongst people of South Asian origin. Yes, surgery is possible for glaucoma patients. However, the Afro-Caribbean population's skin is far more tender than Caucasian skin and therefore a nick in the eye can lead to bleeding, pain, swelling and damage far more easily. As I mentioned earlier, the research base reveals that visual impairment research literature tends to ignore issues of race and ethnicity and that relating to 'race relations and ethnic diversity', largely excludes attention to sight loss. I am delighted to see that Henshaws are taking a lead on this issue. Out of the project came the general consensus that there was an under-use of services by ethnic minority groups and that has been reiterated again here today. There is also the issue of possible under-registration and certainly a problem with low levels of knowledge amongst BME communities. However, there was also a failure to recognise needs that can be addressed and those that have been addressed have been done so through many short-term unreported and under-evaluated projects. So what are the factors affecting BME communities use of services? Yes there are ethnic differences in patterns of disease. We have already highlighted that Glaucoma is more prevalent amongst Afro-Caribbeans where blood pressure is raised, for example. There are also different perceptions of health, the body and disease amongst BME communities which should be addressed. Disability, for example, is largely seen as a taboo for many ethnic minority families. We have highlighted the cultural and language differences in descriptions that cause a barrier to accessing services. Someone may go to the hospital, for example, complaining of a sick heart and their cardio vascular system may be examined. What the patient actually means is that he is feeling depressed! This kind of language difference can seem insurmountable. However, we mustn't forget that every PCT, hospital and Trust in the country does have access to NHS Direct Translation Service online which can help to address some of these language barriers. Patients may be put off by previous experiences of encounters with services and may seek alternative treatment options. The lifestyle, socio-economic status, religion and cultural practices of ethnic minority groups can differ hugely from white British groups. And let's not forget that word "racism" which still exists and can still be direct, personal, indirect or institutional. Another factor may be language, education and availability of information to BME communities as well as the attitude, awareness and skill of clinical staff. To achieve an improvement in service uptake requires assertive outreach, cultural competence and partnership with minority ethnic groups. To this list we should also add resources and persistence. All too often I hear "we tried to put on a service for BME groups, but they didn't come" - well "keep trying" I say! So what new and refreshed insights can I give you today? Our project discovered that there was a greater level of housing need. That there is an impact on social and religious life. That there is a lack of social and family understanding and that people of BME groups generally have low expectations (see sight loss as part of an inevitable ageing process). There is also a sense of stigma or false pride amongst ethnic minority groups and a sort of learned helplessness. Any response at improving access to services must be community specific. In attempt to define a model for good practice, the project went through 12 stages as follows: * Stage 1 - Project initiation: The conceptualisation and Initial Planning * Stage 2 - Key workers were recruited * Stage 3 - local services were reviewed * Stage 4 - A network of stakeholders was created * Stage 5 - Community facilitators were recruited * Stage 6 - A project agenda and topic guide were developed * Stage 7 - Interviews with BME groups were conducted * Stage 8 - The results were reviewed, analysed and findings feedback * Stage 9 - Information Packs and training were refined as a result of the research findings. * Stage 10 - Appropriate action was taken, including further intervention * Stage 11 - the project was evaluated * Stage 12 - (If appropriate) we recommend that learning be established and integrated into mainstream practice. And how do we do that? Well, we need checklists. A checklist of issues to raise with and within communities and organisation and a toolkit checklist for service providers. Race Equality schemes are now required by law as are disability rights. The key recommendations arising out of the project are as follows: * Sight loss support services need to recruit staff from within minority communities. * Information must be translated into minority languages * Information needs to be actively promoted through community organisations * Sustained effort may be needed to overcome suspicion based on past experiences * Previous initiatives have foundered because of a lack of continuity - a longer-term perspective is required to bring change and create better relationships." Question from audience Have you come across good practice in statutory service providers? Prof. Johnson response Yes, amongst those I can mention are RNIB, Henshaws and Birmingham Focus. The Royal Society for the Blind also have a high street office run by an Asian/Punjabi speaking worker where people can drop in and access the service in the community in a very informal way. I think this is an excellent step forward. Seeability is another example of good practice and is a case where management support and leadership made a huge difference to the success of their endeavours. There may be good practice but I think the problem is that it does not often get written up and documented for others to use. Good practice, I have to say, is not always to be found in the VI sector. I am actually the Editor of a new journal called "Diversity in Social Care" and the back pages of this journal are dedicated to examples of best practice. I am hoping that people will write in so that information can be shared for the benefit of everyone. Comment from audience I think we can learn from the Jewish community who have a very strong support network of their own Prof. Johnson response Yes, I have this theory that minority communities create as much welfare as they consume. Certainly, research and development must involve members of the community if it is to be put to practical effect. Just consider the phrase "not about us, without us." Audience Comment Tower Hamlets has undertaken a project with Seeability to raise awareness of visual impairment amongst BME communities. The project worker who wanted to attend the conference today is herself visually impaired and Bengali. This latter point is the single most important factor in the success of the project. She has however encountered difficulties with fellow staff who are keen to learn about the implications of sight loss but are less keen to learn about the interrelated cultural/disability issues. Recommendations * Organisations should adopt a checklist approach including: race strategy; staff training; effective monitoring; broad involvement and programme of outreach using a community based approach. * CD ROMs are helpful for providing a talking version of leaflets. * There needs to be mainstreaming of funding to support increasing take up of services. * Publicity material needs to learn from the existing use of branding/lettering to attract particular ethnic groups. * Specialist workers require strong management support and an organisation-wide approach - it is not appropriate to "parachute people in" and leave them to solve all the issues single-handed. * Articles/experiences/information sharing around the issues of visual impairment and BME should be published in journals such as "Diversity in Health and Social Care". "Not about us without us". Good practice in Leicester - Differences in Culture, Religion and Language Avtar Baghara and Jo Vavasour, VISTA Society for the Blind "Hello we are here today from VISTA and I just want to start by explaining a little more about the scope and services our organisation provides. VISTA is based in Leicester and offers services to visually impaired people in Leicester, Leicestershire and Rutland. We have two homes for the elderly as part of our residential services. VISTA also has a resources centre which is used for drop in sessions. These include a low vision clinic, activity rooms. We produce 3,000 Talking Newspapers each week and we hold the visual impairment register for the area. The Resources Centre is a lovely, modern and accessible building. We also have a centre in Wakerley which has recently been newly refurbished. From here we provide IT training, a soft playroom, a craft room and a training room. Coming now onto our cultural services I want to give a brief overview of the different religions. Religion is a very complicated and delicate issue, however, and I feel very conscious not to offend anyone who may have religious beliefs by providing a summary in this way. Avtar Bagahra then gave a brief overview of the following religions in chronological order: Hinduism, Islam, Sikhism and Christianity. In terms of the planning we have done at VISTA for providing services for people of other cultures, we have found that trust and communication is the key to good cultural services. We aim to take our VI expertise out into the community. VISTA always tries to consider who the service is aimed at in the planning phase and we have been able to provide an Afro-Caribbean worker and an Asian-Punjabi speaking worker. We publish our documents in a range of other languages and use our volunteers from ethnic minority backgrounds who are living in the community to translate the documents. Our Talking News Services are published on Punjabi, Gujurati and Urdu cassettes. We are also able to refer black African Caribbeans to other organisations with whom we have close links. VISTA now provides social groups for people who speak Gujurati and Punjabi. There is also an African Caribbean social group. These groups are mainly for older people, but also now for children and families. Our range of activity classes is very diverse and includes a Navjot group, Pragna Chaksu, Wood sculpture, crafts and English for speakers of other languages. Both the Navjot and Pragna Chaksu groups discuss issues relevant to those attending. The Wood sculpture group started by being an Asian sculpture group, but as time went on people from different ethnic backgrounds became integrated. As I think I have already mentioned, our specialist workers and volunteers include a Punjabi speaking development officer, a Gujurati speaking development officer and volunteers with language skills. We actively recruit volunteers throughout the year and we do have a full-time volunteer co-ordinator. VISTA also has a dual sensory impaired specialist worked who can sign and speak in different languages. Trips to religious places and places of cultural interest are an important part of our service provision. We even took a float at a recent African Caribbean carnival as a way of raising awareness amongst ethnic minority groups in the community. Our mission statement as an organisation is "to serve the needs of blind and partially sighted people in Leicester, Leicestershire and Rutland through responsive services." Our vision is "to support the blind and partially sighted people of Leicester, Leicestershire and Rutland to achieve their aspirations as valued individuals." We find that when people lose their sight they also lose their confidence. VISTA's core principals can be outlined as follows: * Dignity and respect as a unique individual * Privacy in their own home * Protection from harm * Independence to the greatest degree possible * Choice so that people are empowered * Rights as for all people in society * Cultural and spiritual value according to individual beliefs and background * A voice that is heard For Asian people, culture and religion go hand in hand and it is essential to understand the religion first before approaching cultural issues. Trust is incredibly important in our work - once you have that you can do anything. It is no good, for example, having a 78 year old Punjabi speaking woman and sending out a young male support worker dressed in a suit. She just wouldn't let him in the house - let alone build up a rapport. Anything we can do to help VI people and people of an ethnic minority background then we are happy to do. Our doors are always open at VISTA for those wanting to share experiences. Suggestion from audience A good way, I think, of getting people into Centres such as yours is encouraging people to make and bring food typical of their culture to share. VISTA response Food is a huge area for cultural difference. At the Sikh temple, for example, food is provided free of charge and we were finding it hard to charge for food at events/social groups when people could get it free. Donations from the congregations are used to pay for the food. So, as an alternative, VISTA decided to take our VI service users to the temple. In terms of bringing food into the centre, although this sounds like a very good idea for including people, I do think there are important health and safety implications. One thing is for sure, however, is that you can't expect the community to come to you, they are very shy and you must go into the community." "Enlightenment" - a short film made be Asian blind people Mahesh Laheru Waltham Forest Asian Blind Association "The lowest priority of social services I have found are blind and deaf people. 'Roshni' is the name of the film I have made which translates from Punjabi to mean "enlightenment". Hopefully the film that I have produced about the needs of Asian visually impaired people will enlighten the Asian community as a whole. The film is in three parts. Part one focuses on eye conditions and is from the perspective of an eye surgeon. Part two focuses on testimonials from Asian visually impaired people. It covers a range of themes such as an employed VI person needing support, a VI housewife bringing up a child and how it is for her as an Asian VI parent. There are stories from two elderly VI and disabled people. I have also recorded the story which I feel to be typical of the Muslim community - with a very demanding husband. Finally, I have the story of an Asian blind man who finds great embarrassment talking about his blindness." "It cost me £3,000 to make the film and it is 1.5hrs long. It took me four hours to shoot and was difficult to edit down. Over half of this money went into the production of the film and the final editing/production was done in India to save on costs. This is the first public showing of the film and it is an opportunity for people to see and hear real interviews given by blind people put across in everyday language and subtitled in English. It shows the difficulties that Asian visually impaired people are facing. Mahesh Laheru then showed Part 2 of the film and the transcript of this section is as follows: "PART TWO DIFFICULTIES EXPERIENCED BY BLIND AND PARTIALLY SIGHTED ASIAN PEOPLE INTERVIEW WITH MR JATENDRA DAPALA Mr Mahesh Lehru - You are doing an important work at Royal London Society for blind. You must be relying on the support of your colleagues in your work. What kind of help do you expect from your colleagues.... and workers at the factory where you're working? Mr Jitendra Depala- The kind of work we expect from our friends in.... various odd jobs we do.... expect assistance. For example, if we have to read something then they read it to us with CCTV, if we've to work on the machine then they should hand us the tools. So that we can go about with out any difficulty. Near the machine...or to the canteen... or in the office or in the toilet...they can guide us to. We expect this kind of assistance... for our mobility and many others. Mr Mahesh Lehru- What kind of assistance do you expect from... your wife, friends or volunteers? At any point of time you need help or you in trouble... then what kind of help you expect from these people? Mr Jitendra Depala- You have expectations from your life partner. That is a very natural thing. You might want to read something... or...might want to... put a thread in a needle or... know about the colour of the cloth... or... whether the colour matches or if it has been worn properly... or if the dress is suiting you or not. Then there are personal matters. These things can only be asked to a life partner. From friends we expect that... when I go out then they help me cross the road... or help me with the special goods, explain it in detail and make us feel it and tell us about its shape... and its colour and how it is supposed to stand... and whether is it useful for us? We expect such things from them. INTERVIEW WITH MRS BALWINDER KAUR Mr Mahesh Lehru- I welcome you to this programme. My name is Mahesh Lehru and I will ask you some questions. I know that you lost your sight in the year 1989. You must be facing a lot of problems as a housewife after losing your sight. You are a mother and a housewife. Can you tell us about the various...problems you faced after losing your eyesight? Mrs Balwinder Kaur- When I had this accident at the bus stop, I was in hospital for a year. My son was very young at that time. But he had to be sent to school. He used to sleep with me at night. I had to wake him up for help or to take me to the toilet. Then he couldn't sleep after that. He used to fall asleep in the bus the next day on his way to school. There were a lot of problems about his studies due to this. He couldn't complete his education as...he used to be worried about me. He used to be depressed. That's why he had bad relations with college boys. I used to be very upset. I couldn't cook. Some of my friends used to come and give us food. I went to the Asian centre on the advice of my social worker. She told me I'd get food there. From then on my lunch used to come from there. I had many more minor problems. Like looking after my child. Even I couldn't take care of him. He used to be very upset. So what else should I say? Mr Mahesh Lehru-You must be very upset, as you are a mother. And you are not in a position to fulfil the needs of your child. Like you are not able to cook for him or take care of him. You must be feeling upset about all this. Mrs Balwinder Kaur- I was very sad my husband too had died in 1989. After his death, I had this accident. My child did not have any support. I had decided that I would fulfil the duties of a mother and a father. That I did. I did whatever I could. I have tried to...fulfil all his dreams. There is only one thing I could not do...his studies...was the only thing I could not do for him. Otherwise I have done everything. I have given him everything. So that he does not miss anything. He does wish that I could see him. And how he looks now that he has grown up. That is his desire. I cannot see him unhappy he starts crying. Mr Mahesh Lehru-This is a sensitive issue. You take care of the household chores, laundry, cooking, etc what kind of difficulty do you face doing them? How do you solve these difficulties? Mrs Balwinder Kaur- I do it anyhow. God has given me lot of courage and strength. I pray to God to give me more courage, to keep me in good health, so that I do my own work. Mr Mahesh Lehru- It is a good thing that you have so much courage.... and hope.... and pray to... Mrs Balwinder Kaur - do my own work and not trouble anybody. There is some work, which I cannot do. And I need somebody for that. I need a trustworthy escort or a lady. INTERVIEW WITH MR NARENDRA MEHTA Mrs Kundan Mehta-You came here in the year 1973 for a professional course, right. What other difficulties have you experienced in settling down here as a professional? Mr Mehta- It was very difficult particularly in the beginning because I was first time away from my own country. New language, new culture here and of course new weather because I came here in winter in October and by November and December it was freezing here. I could not even read the Braille because my fingers were freezing. I had to sit near the radiator so that I could keep warming up my hands while reading Braille. It was really very difficult for me and of course socializing was hard too because I had no friends here and I missed all my friends back home especially my school, college friends because of the language again. I did know English but I had no experience of communicating in English fluently. Another problem was food. I was in a boarding school here when I came for a physiotherapy course so I was living in a hostel where they only served English food. I missed my Asian or Gujarati spicy food. It was all watered down version of boiled food. So I was hungry, I was cold, I was missing my people I had no friends and so I was emotionally also worse settled. And put it altogether it was the worst time of my life, particularly the first six months. Then I got used to it and made a few friends and got used to the language a little bit but the culture was so different, not that I didn't like it, I just could not get used to it. I also had to leave the course for which I came for, due to certain reasons. Then I started a new course in massage and body work. Which I enjoyed tremendously and then I started staying with my uncle and his family and that was much better for me because then I was eating my proper food and because I was staying with the family and relatives so I was getting emotional support from them too. So I was much better and I could concentrate on my studies. INTERVIEW WITH MR MOOSA BHAGGIA AND MRS SARAH BHAGGIA Mr Mahesh Lehru- Has Mrs Bhaggia contributed to your success. Mrs Bhaggia- 100% I help him all the time. Mr Mahesh Lehru-You always support him. Mrs Bhaggia- Always Mr Mahesh Lehru- Do you support him even if he is wrong? Mrs Bhaggia- Yes I bear it. Mr Mahesh Lehru- You bear it. Mrs Bhaggia-Yes Mr Mahesh Lehru - But you never protested? Mrs Bhaggia- Never Mr Mahesh Lehru - This is the reason behind your success? Mr Bhaggia- We have been married for 48 years. I don't remember any such incident where she has rejected my opinion. She has always stood by me and helped me. It is a thing of pride and I am sure that nobody has a wife like mine. Mr Mahesh Lehru - Thank You INTERVIEW WITH MRS KISHWAR CHISTY Mr Mahesh Lehru- we know that you have been living alone since last 30 years. You have raised your two daughters as a single parent after ... your husband passed away. You must have faced lots of problems. I want to know that, as you are losing your eyesight slowly...you must be facing problems in your work. Can you tell us the various difficulties...you are facing due to loss of vision? Mrs Kishwar Chisty- I have to get up in the middle of the night to check uncommon noises. And lot of times I open the door when I am unable to see any thing. I have problems due to that. I did not know when I lost my sight. My blood pressure had shut up, due to which I had bleeding in the eye. As a result my nerve was damaged. I underwent treatment at the hospital but without any result. I'm registered as partially sighted. I have problems staying alone. I cannot cook nor can I do any work. I accidentally pour hot water over myself while making tea. I scold my self. I have so many problems. Mr Mahesh Lehru-You have problems while doing household chores like...dusting, cooking, laundry and ironing. But in spite of these problems you carry on with your work. Mrs Kishwar Chisty - I do my work if I'm feeling well. My daughter lives far away from here cooks for me and keeps it in the refrigerator. They send it to me, which I eat with bread. They do the laundry for me. I do my work if I am feeling well. I can cook for myself but some times I cut or burn my self. Three months ago I had fallen down and ... hurt my leg. The tissue in my right leg was damaged. I had to be on crutches, I'm better now. But I have problems in mobility due to arthritis. I can do only few chores a day. Then I lie down. If I have to buy grocery then I only go once to the market. I have to go to the doctor or to the hospital etc. so I go out only once. I cannot lift heavy things. I have a guide stick in one hand so I can hold few things in the other. By God's grace I am living my life but I am tired now. My daughters want me to live with them. But our culture is such that we can't live with our daughters. Mr Mahesh Lehru -That's right Mrs Kishwar Chisty-What else should I say? INTERVIEW WITH MS. SALMA PEERMAMODE Ms Salma Peermamode-In every walk of my life I have been experiencing a lot of difficulties. Because there are quite a lot of things I cannot do any more and I have to ask my children to do it for me. So one has to rely on them. You have to realize when your son is over here is he busy or is he tired? You have to respect their work as well or if he is working nights he cannot wake up to do the hoovering. Even I want to do it but I cannot do it when he is sleeping. Another problem I face is going to shopping; for example before I used to do all my shopping on my own. But now I do shopping with great difficulty because I cannot see any more. So even if I go to the market I do not understand if it's all green or orange because you cannot see. So you have to rely on a friend to tell you this is this and this is that so you can do it. And even in a supermarket as well before in the shop I used to know this is this, so I used to just take it but know I have to write it down and ask my son to bring it. So it is quite a lot of difficulty I am facing at the moment and you cannot always ask people to do things for yourself. For example making a cup of tea etc. I have to do it myself I use colourful cups to make tea, so I can see colour contrast. Mr Mahesh Lehru- But you can use the liquid level indicator, which is available for visually impaired people. Ms Salma Peermamode- I have it, but I do not use that at the moment. I use a large cup so I only fill it half. So there is lot of trouble I am facing now. I have to learn and develop slowly. Reading was my favourite hobby, which I had to give up, and there are other quite a lot of things, which I had to give up. So you still live, you just take one step at a time...you do not know about tomorrow. So when I will wake up tomorrow I will see what I can do. INTERVIEW WITH MR UMAR PETKAR Mr Mahesh Lehru-I believe that your wife is disabled. And she does not know any language other than Punjabi. She is facing a lot of problems. Now that your daughter is married and lives with her in-laws...your wife has now to deal with your responsibility too. What kind of difficulty you and your wife face...while dealing with the various responsibilities? Will you tell us about your experience while dealing with them? Mr Umar Petkar- Mostly I have problems while reading. And I have problems if I want to go out anywhere...because my wife is not literate...if she understands a sign of a door or a house then...with the help of that we reach our destination. Otherwise it is difficult unless someone writes it down for us. Or if there is a driver or an escort or some pedestrian might help us. We can ask them the way. They used to show us the way or the house, which was a great help to us. And I want to...to ... the organization ... we have... I am very grateful to them. I'm thankful for the benefits they give us. Due to which people like us are able to meet each other. We are able to keep in contact with each other. We get an opportunity to share... our pain and sorrow with others. Uh... then we feel like...visiting the organization...and using the opportunity to gain something from them. And we feel satisfied even if we do not gain anything from it. The happiness we get is very important. I want to thank the organization, which invites us... on behalf of my wife too. I want to thank the government too for all the benefits and assistance they have provided. Otherwise it would have been difficult for us to survive. That is why I want to thank everyone. I am grateful to them greetings! INTERVIEW WITH MR JAYESH ACHARYA AND MRS MANJULA ACHARYA Mr Jayesh Acharya-I'll start from the very beginning. Imagine my wife is standing here... and I used to say... come here daughter. I had many problems in my vision. I couldn't see anything. She had to tell me where the food was where the things were kept. I had lots of problems. Mr Mahesh Lehru-I agree that bad eyesight has an effect on us. I want to know... you had a road accident in 1984-85... and it was a serious accident. Did it happen due to your bad eyesight or was it a mere coincident? Mr Jayesh Acharya- I would say that it was a mere coincidence. There was a bit... I had not had my operation at that time. But still I can see something moving. I didn't have a walking stick then. After that they registered me. Motilal Hospital registered me as blind. Mr Mahesh Lehru- But why didn't you get a stick then? Mr Jayesh Acharya- I don't know.... why they did not give me? Mr Mahesh Lehru- As there was no stick in your hand that is why... the insurance company did not pay you a big compensation... because the accident took place at the Zebra crossing. Mr Jayesh Acharya- You are right. Mr Mahesh Lehru- The liability of the accused party is even greater. But the argument of the defence was that you did not have a stick. Why didn't you carry a guide stick? Were you embarrassed to carry one? Mr Jayesh Acharya- No I was not embarrassed. It would have served as a protective instrument for me. People would know... I mean... if I carried a stick then... people would know that I had problem in seeing clearly. They would have helped me cross the street and otherwise too. I'm not embarrassed to carry around a stick. Mr Mahesh Lehru- You are not embarrassed. When did this accident take place... during the day or the evening or in the...? Mr Jayesh Acharya- It was in the evening. I was... Mr Mahesh Lehru - Was the light not enough? Mr Jayesh Acharya- Yes the light wasn't enough. Mr Mahesh Lehru- That means that you had problem while crossing the road. Mr Jayesh Acharya- A little bit... as I told you... in seeing who is in front of me... a little bit. I could see a bit. Mr Mahesh Lehru- Ok... fine your power of visibility was limited to a distance of 5-6 feet. Not more than that. Mrs Manjula Acharya- His confidence was shattered. He used to be very upset and never leave the house. Mr Mahesh Lehru- Did he never go out of the house? Mrs Munjala Acharya- Then I talked to him, that if he went on like this then... he would never be able to become independent. And I pushed him to go out. That he should meet people, which will increase his confidence. Mr Mahesh Lehru- Thank you very much and thank you very much Mani Bhen, for this interview. Mr Jayesh Acharya- I want to thank you Mahesh, for coming to our house with your team." After the film was screened Mahesh Lehru took questions as follows: Question from audience Who is the audience for this film? Mahesh's response The Asian Community primarily, but also other relevant organisations and service providers. Suggestion from audience I think it might be a good idea to film VI people using equipment and how they have benefited from it and how their independence has been maintained. We need to show that equipment can be used by Asian communities rather than Asian VI people having to be supported by family members. We want to promote their independence and capabilities and there is a need for good Asian role models in this respect. Mahesh's Response There has only been time to show one part of the film today. Rehabilitation features elsewhere in the film. Question from audience How much will the film cost? Mahesh's Response I have not yet worked out the cost but will circulate details via this conference group. Comment from audience Well done for your fantastic piece of work. However, we cannot let mainstream service providers off the hook. They must understand the importance of the voices on this film so that they put money into training people up to address these issues practically. The voluntary sector is clearly taking initiatives to address visual impairment in the BME community and the statutory sector must also be as responsive. Why do you need a specialist service? Jim Moran, LVSB "Well, that is a pretty obvious question isn't it - why do you need a specialist service? It was Younus Khan of the RNIB who asked me what services LVSB were offering BME communities in Liverpool. We asserted that we are an equal opportunities service provider and that our full range of services were available to VI BME groups. Then Younus said "Prove it!". When we sat down together to look at the register he pointed out that LVSB didn't actually know the ethnicity of people on our register and that we therefore could not claim to be providing services for BME groups. In Liverpool, we identified 8 different communities. There is a big Chinese community in Liverpool. At that time there were 3,000 people on our register and 10% were from different communities. However, in reality we only had about 80 people from BME communities. We had all the services, but black people were not using them. So the problem we faced was how are we going to get people of different ethnic backgrounds to use our services. The Lottery funded a three-year post for a Development Worker, taken up by Jamal Abdullah. Jamal worked closely with Chinese and Afro-Caribbean groups and we managed to set up a Chinese Talking newspapers. We now also run self-help groups for Afro-Caribbean and Chinese. We initially went to the groups who really wanted our services and then used our knowledge of setting up these groups for others in the community setting. In the third year of funding, we hosted a conference for the 8 communities we had identified in Liverpool and this had moderate success. I think BME groups were fed up of false promises and of being over-consulted. The conference showed that people needed a Rehab Officer who could identify with the needs of their own particular group - someone who could go out into the community. We also discovered that written leaflets are of very little use. People much prefer the spoken word so LVSB started to provide information on tape. Our community groups challenged us to provide a better service for the future. Also in the third year of the project, we managed to secure further funding from Guide Dogs for a further year. They provided the funding for a BME Rehabilitation Officer in Liverpool and any ideas and information was shared between LVSB and Guide Dogs for the Blind. When this funding ran out we then approached the Local Authority in Liverpool. When they could see that our approach worked and that we were running a successful service, they were happy to provide further funding to continue the work of the Rehab. Officer. Blindness is often considered by BME families as something to sort out - something that's shameful. It was a big task for LVSB's Rehab. Officer as the BME families we were dealing with often saw independence as the last thing they expected to achieve. We found out that one the most important aspects of our service is our interpreter - people who know what the Rehab process was like. At LVSB we will only use interpreters who've had our training and who understand visual impairment. We now have 150 people on our database from BME groups - almost 5% of the register. And yet, the hospitals in our local area still say that they don't see many black faces. Now we are starting to focus on GPs as a group who need greater understanding of these issues. We found that 70% of white people who are registered blind are over 70, but that in BME communities 70% of people who are registered blind are under 70. LVSB has also got funding from Mersey travel only recently to fund a guide communicator who will encourage BME communities to use public transport. We are sure that if someone can show people what they can do then more people will use transport, attend hospital appointments and maintain their independence. Question from audience What are the statistics for Guide Dogs service users from BME communities? Response from Guide Dogs delegate in audience We are pleased to say that the number of BME service users is also increasing for us. However, there are also certain issues culturally about using a dog for certain ethnic minorities. Of course, not everyone who qualified for a dog can get one either. Service User perspective Tahira Khan- Sindhu "People sometimes describe me as the activist with no name as I enjoy supporting people like me in my community. I am married with 3 kids aged 17, 16 and 10. My youngest son was born prematurely and is registered blind with additional mental and learning disabilities. I have been involved with Henshaws for 12-13 years and have benefited from their many services during this time. My son attends Henshaws Holiday Club and I have made good friends with some of the staff who have been here as long as me. I think the Handy Guide for Families is an excellent tool for parents and professionals and the Spreading the Word project has been of great practical importance for BME communities. My only regret is that there's still not many BME communities accessing the services that are available to them. I'd like to help breakdown barriers and would like to see more partnership working." Comment from audience We need more role models like Tahira who are willing and able to speak out. Tahira's response Well I'm happy to do this because you don't get your reward here but in the next world. Many people have empathy with you, but ultimately nothing gets done. As an Asian person it is easy to blame other people, but we have to go forward collectively and speak for us. I am a nurse by profession and am educated. I have to stand up for my son as it is his right to be able to use the services that are available. Comment from audience Disability is still low on people's agenda. At the moment, I don't think there is much partnership working. There are people, for example, who to learn English but few people to champion and take the lead. Tahira's response We need more community workers who speak languages. There are 90 different languages spoken in Trafford alone. Audience comment I'd just like to dispel the myth that seems prevalent today that social services have the money. I run a team of 13 workers and the only reason this is the case is because I seemed to have developed a talent for looking under stones for funding. Half my team are part time workers and they left on Christmas Even this year not sure if they would return to a job in the New Year. So no, Social Services are not cash rich. Tahira's reponse That's all very well, but my son does have a right to access the best possible service. It's all very well people complaining about what it feels like only having six hours sleep a night as a parent - but you see what it feels like having only six hours a week. Until you have walked my shoes it is not fair to say. Audience comment I think there is also the misconception that to provide services to blind and disabled people costs extra. Audience comment We should be listening to the service users. If we don't listen we'll just be running round in circles. Tahira's response All my local PCT seem to do is consult BME groups. Audience comment I think today we seem to have identified common ground between the voluntary and statutory sectors, in cases where funding has been withdrawn. People everywhere are working daily to continue to provide quality services. Let's now move forward and bring this all together for the same good. Which is to support visually impaired people of all communities. That is what we are all here today to do. Conference Closed by Louise Hutchinson, Henshaws Regional Director for Greater Manchester. "What I have taken on board from today is that we can all "talk until the cows come home" but unless anything happens and there is action, then people soon become very disillusioned. I would urge us all who have attended the conference today to work together in partnership where possible to avoid duplication of effort. We are grateful to all our speakers who have encouraged a stimulating debate. Thanks must also go to Caryl Agard for chairing this event and promoting such excellent audience involvement, to our partners who have helped to plan this event, and to Lucy Bradburn for turning these plans into this conference. Finally, the word catalyst has been used several times today, but I'd like to underline the input of Edward Childs - who has turned this project into a reality."