Projects in Birmingham, Devon, Derbyshire, Tower Hamlets, Bradford and Sheffield are among only thirteen to be cited as “good practice” in a new guide to providing vision services for people from black and minority ethnic communities.
The guide, “People from Black and minority ethnic communities and vision services: A Good Practice Guide” (1), is published this week by the sight loss charity, Thomas Pocklington Trust (2), and is an important new resource for those who commission and provide health and social care. It provides an overview of what’s going wrong and real examples of what’s being done to improve it.
However, after reviewing existing evidence and interviewing projects around the country Pocklington reveals that long-term, effective projects are few and far between. Many projects are put together as “add-ons” to existing services, rather than being routine. The result is that people from black and minority ethnic communities, who are the most likely to suffer from sight loss, are still the least likely to receive the necessary care.
“Too much emphasis is put on short term projects, but the problems of sight-loss last a lifetime,” says Sarah Buchanan, Thomas Pocklington Trust Research and Development Manager. “Primary Care Trusts and others who fund or provide services need to stop treating vision services for black and ethnic minorities as add-ons and make them integral to their day-to-day services.”
People from black and ethnic minority communities are recognised as least likely to seek help when suffering with sight problems (3), yet they are some of the most vulnerable to sight loss. People of African-Caribbean descent, for example, are eight times more likely to develop glaucoma than the general population and it tends to occur ten to fifteen years earlier than in other ethnic groups. Glaucoma is a major cause of irreversible blindness and it is avoidable with early detection and treatment. Diabetes - the leading cause of blindness in the UK working age population - is also more prevalent among people from black and minority ethnic groups than in the population as a whole.
Under equality legislation social and health care providers, both statutory and voluntary, are required to make special efforts to reach BME communities. The guide summarises their responsibilities and suggests that far too many providers are failing to meet them. Race equality schemes are hard to find; services are poorly able to respond to cultural diversity, and ethnic monitoring is often inadequate. As a result eye conditions within BME communities are not picked up as soon as they could be and treatment and support is too little, too late.
But in Birmingham, Devon, Derbyshire, Tower Hamlets, Bradford and Sheffield projects have been successful in taking vision services to the people. Pocklington spotlights these as examples of “best practice” and urges other social and health care providers to follow their lead.
Birmingham: Birmingham Focus on Blindness promotes “sight loss information fairs” held in community venues, and “community champions” - local people trained to talk about sight loss and gather community feedback.
Devon: Living Options Devon organises roughly monthly “Outreach Forums” where 15-20 people can share their problems.
Tower Hamlets, London: The organisation, SeeAbility, has set up a Community Development Service providing drop-in sessions, telephone support and regular direct contact including visits to religious and educational establishments.
Also in Tower Hamlets, the local authority and the Primary Care Trust work together to develop clear pathways through local services. A “Low Vision Services Committee” encourages multi-agency working and a Directory of Services for people with visual impairment has been produced.
Another project - the “Expert Patients Programme” – trains people with eye conditions to be tutors so they can pass on their knowledge and share experiences with other BME people with sight problems.
Dekhtay Chai is a voluntary organisation in the same London Borough. It offers information, including benefits advice and helps people to apply for entitlements.
Action for Blind People works with Dekhtay Chai to run monthly “housing surgeries.” These are popular and allow for face-to-face contact which helps the spread of information.
Derbyshire: Derbyshire Association for the Blind hold “Low Vision Assessments” in community centres, where low vision aids can be demonstrated and tried out. They have also trained “Champion Volunteers” from local BME communities to deliver talks and support within their communities.
Bradford: Vision “lunches” providing workshops, demonstrations of equipment and one-to-one assessments, have been organised by the Local Authority Sensory Needs Service.
Sheffield: The support nurse at Royal Hallamshire Hospital eye clinic invites people from BME communities to choose their own reading material for sight tests. This means they can bring something in their own language and provides a more accurate assessment of their sight.
Nationally: The Deafblind UK BME Project holds events targeted at African-Caribbean, Chinese, Irish and South Asian communities throughout the UK. It produces leaflets in minority languages and recruits members, carers and volunteers to promote services to BME communities.
“These excellent examples show what can be done when vision services are taken to the people. But there are far too few and they are mostly in areas with high concentrations of black and ethnic minorities while in other areas small communities continue to remain invisible,” says Sarah Buchanan. “Until this work is mainstreamed into regular health and social care services across the UK, black and minority ethnic communities will continue to lose out on vital eye care and support.”
Editor’s notes:
1. Thomas Pocklington Trust is a charity which aims to improve the quality of life of people with sight loss. It is a leading provider of housing, care and support services for people with sight loss in the UK, and is a major research and development body.
2. “People from Black and minority ethnic communities and vision services: A Good Practice Guide” by Ros Levenson and Nikki Joule is available from www.pocklington-trust.org.uk from 9th December 2008.
3. Research shows there is under-use of low vision services by black and minority ethnic communities. Sight loss may carry a stigma or be seen as inevitable so that it may not be understood that something can be done to help. Language and cultural traditions can also throw up barriers. Johnson and Morjaria-Keval 2005; Higginbottom et al. 2006; RNIB 2003b.
