Judith Barrett examines how three well-known organisations have tried to make their services more inclusive, and asks BME-led charities for their views.
The British Heart Foundation
People from Britain's south Asian communities are 50 per cent more likely to suffer from heart problems than the population as a whole. This prompted the British Heart Foundation to try to improve its services for this group. It began by listening. "We ran a three-day workshop to which we invited health professionals, academics and grass-roots workers with south Asian communities," says Qaim Zaidi, ethnic strategy coordinator at the charity. The ideas and opinions that emerged formed the basis of the foundation's strategy.
The resulting programme ranges from free DVDs and leaflets in the relevant languages to the funding of grass-roots work with heart patients in east London. Outreach work includes a regular presence at annual melas - summer fairs held in 12 UK cities - and discussion with imams about incorporating an anti-smoking message into their teaching during Ramadan. This work is reinforced through south Asian TV, radio and print media.
Zaidi stresses the contribution made by organisations in the south Asian community. "They are doing much that we don't have to duplicate," he says.
"For example, doctors working with the South Asian Health Foundation will organise events with the British Medical Association, for which we can provide the funding." He also emphasises the value of the role BME-run organisations play at grassroots level in empowering the communities in which they work.
The strategy received clear endorsement from the top - the foundation's chief executive volunteered for weekend shifts in the charity's 'mela marquee'. But it needs to go further, says Zaidi. "The whole organisational culture has to change," he says. "At the foundation, we are at a stage in which every department is conscious of the fact that the projects we undertake should bear in mind the diversity of the UK's population."
The British Heart Foundation was recently given an award by the Department of Health for the best proactive health campaign for its work on heart disease with south Asian communities. Zaidi is using a similar approach in attempts to extend its outreach work to African and Caribbean communities.
MacMillan Cancer Support
Whereas the British Heart Foundation began by drawing up its strategy, at Macmillan the work began on the ground. "It was our nurses who told us that we were not meeting the needs of some BME cancer patients," says Steve Edwards, information and support services adviser for north-west England at Macmillan. "First-generation migrants, whose English wasn't fluent, were dying in pain. The language barrier meant that the nurses could not provide the palliative care they needed."
According to Edwards, it wasn't only a question of employing interpreters.
"In Bradford, we appointed our first ethnic community liaison officer," he says. "He was able to tell clinical staff that the differences of dialect and religious background between most of Bradford's interpreters and cancer patients meant it was still difficult for them to communicate. The liaison officer helped to find interpreters who spoke the right dialects and shared the patients' backgrounds."
Macmillan now has community liaison officers in each of its four UK regions - permanent posts funded by the charity for the first three years, then by the local primary care trust. The charity is keen to increase their numbers.
"We also work with our clinical teams to inform their practice," says Edwards. "Some go with liaison workers to talk about breast cancer at ladies' groups, for example, so that they can understand any preconceptions about cancer the women have that might affect their care.
"We've produced two toolkits for health professionals: one on communicating with south Asian families, which includes advice on how to use an interpreter effectively, for example, and a second on working with African-Caribbean men, for whom the risk of prostate cancer is three times greater than it is for other UK men.
"We also work with BME-run organisations, such as Cancer Equality and the African Caribbean Leukaemia Trust."
Macmillan wants to 'mainstream' its work with BME communities and deal with all the factors that result in unequal access to cancer services - these include not only ethnicity, but poverty, sexual orientation and disabilities.
Melanie Lee's role as equality and diversity strategy manager at Macmillan is to ensure the necessary cultural change takes place throughout the organisation so that this commitment to equality of access becomes a reality.
For this to happen, she says, the role of the board is key, and this is now being recognised by the board itself. Like the board at the British Heart Foundation, it has committed substantial funds from the outset, so the specialist staff have a budget with which they can effect change.
VSO was eager to recruit volunteers from diaspora communities in the UK - those BME communities that maintain links with their countries of heritage or origin. But it discovered that people from these communities were reluctant to join standard programmes, in which VSO specifies the destination country and project and the minimum placement is for two years.
The resulting negotiation, which took some time, prompted VSO to introduce a tailored programme with a reduced minimum placement period.
Diaspora organisations were already involved in development work and were keen to collaborate with VSO. "They wanted their own voice in the implementation of development," says Alache Ode, diaspora development worker at VSO. "So VSO made the decision to work in a very flexible way."
The charity is now working with five UK-based diaspora organisations. Together, they recruit volunteers for development projects in India and Africa.
VSO helps with carrying out the needs analysis, but the programme planning is the responsibility of the partner organisations, subject to VSO's final approval. VSO assists with pre-departure training and meets the majority of the costs.
"It's about recognising that there are different ways to achieve the same objective," says Chukwu-Emeka Chikezie, director of the African Foundation for Development, known as Afford, one of the five organisations working with VSO. "It's important for smaller organisations to be absolutely sure of their own agendas and to stand their ground."
... But 'failing on trustees and funding'
There has been some progress in spreading services more widely. But diversity in governance remains limited, and BME-led groups say they don't get proper funding Many large charities have still not really addressed the problem of engaging properly with beneficiaries from ethnic minorities, according to the Council of Ethnic Minority Voluntary Sector Organisations.
"I don't think these large charities have really looked at themselves internally to see how they can cater for the wider community," says Hashmukh Pankhania, acting chief executive of Cemvo. He emphasises the need for charity trustees to come from diverse backgrounds. "In order to make policies for the BME communities," he says, "you need someone from that background."
The Macmillan board has no BME members and the British Heart Foundation has one; three of VSO's 12-strong UK committee are non-white. It is rare for the larger charities to have representation at board level from any of the BME-run organisations with which they collaborate - something that might produce a different perspective on how best to meet the needs of BME service-users and work with BME-led groups.
Jolanta Lasota, head of the Governance Hub, agrees that boards need greater diversity, but says that is not down only to the board. Charities must also involve service users in the decision-making processes because this creates "a pool of people from whom trustees can come in the future - you've got a channel open", she says.
Many of the larger charities seek to make links with BME-run organisations working in their field, valuing their contacts and advice, but the relationship is rarely perceived as equal. When the larger charities focus on the needs of their service users, working with BME organisations can often become simply a means to an end. Jeremy Crook, director of the Black Training and Enterprise Group, says insufficient thought is given to how BME groups and the older, better-funded voluntary sector organisations can best work together. All too often, he says, the larger charities just want to use BME-run groups as "a means to engage", but what many such groups really need is more secure funding and capacity building.
This is confirmed by Orin Lewis and Beverley De-Gale, who established the African Caribbean Leukaemia Trust because no one was talking directly to their community about the need to come forward as bone marrow and blood donors. "Yet when it comes to funding," says Lewis, "it is not a level playing field. There is a lot of passion coming out of the BME community to make a difference, especially on health, but it always seems to be a lot tougher to prove our need for funding."
Nevertheless, the trust has become a successful charity in its own right, working to increase the number of potential donors of black or mixed parentage on the UK bone marrow register. When De-Gale and Lewis started the charity in 1996, of the 285,000 potential donors then registered in the UK, only about 550 were black or mixed race. This number is now about 20,000, but needs to rise to 50,000 or 60,000 if it is to reflect the proportion of black people in the UK.