Interview With an Entrepreneur: Elizabeth Bayliss

It is an uncomfortable fact that inequality and racism pervade the UK health system. Whether this is down to institutional history, the behaviour of individuals or unwillingness to change is debateable. But, the consequences continue to be felt by the millions of people across the country who are being failed by the system. Elizabeth Bayliss, CEO of Social Action for Health (SAfH), a community development charity based in East London, tackles this injustice face-on and her approach is always to start and end with the people. She talks to Zenobia Talati.

Name: Elizabeth Bayliss

Age: 57

Job Title: CEO and a Social Entrepreneur

Organisation: Social Action for Health (SAfH)

SAfH works alongside marginalised local people towards justice, equality, better health and wellbeing. Such goals have an unfortunate tendency to be bandied about without meaning or materialisation, but after meeting Elizabeth, it becomes obvious that she is a woman who knows how to get things done. She joined SAfH ten years ago and each of those years she has managed to grow the business. She is brimming with enthusiasm, knowledge and tenacity and she has established an intricate network of local contacts that firmly embed SAfH within the community.

The organisation was set up in 1986 after a health inequalities inquiry that was conducted in the Spitalfields area in East London. As is still the case today, the area had a high migrant population, many of whom were Bangladeshi. Elizabeth says one of the things the enquiry found was that there was a lot of inaction around problems which had possible solutions, but there was no organisation that knew how to tackle them.

For instance, there was an infestation of rats in the area but the pest control services said they could not do anything about it because people would not let them into their houses to put down poison. So authorities assumed that the people were dirty and happy to live like this. The health enquiry challenged these assumptions. It found that a pest control man would visit people on his own, in the middle of the day, when a woman would often be home alone and there was no translation service available. “So people did not open their doors to a strange man they did not know. And the strange man turned this into these people don’t want this service.” Elizabeth says. “There was a real, unhealthy unwillingness to work within the situation.”

So Tower Hamlets Health Strategy Group, as SAfH was then called, employed somebody to work with the pest control service and explain to people what was going on and what they needed to do. “Of course, people were saying please come in, we’ve got rats, and we hate them,” she says. So the problem was sorted.

This story reads like a parable about needless inaction, miscommunication and stereotyping around cultural difference. Unfortunately, more than twenty years on, SAfH is working to address countless other examples of injustice that are still going on.

What is most compelling about the projects that SAfH gets involved with is that they are generated and designed by the community: “We don’t start with the concept of the service; we start with what’s happening on the ground. And we ask people.” Elizabeth says.

Much of this communication is conducted through Health Guides, employed members of the community who run thousands of sessions a year in their own language, each with 20-25 local people. SAfH is in the process of recruiting its next batch of Health Guides and Elizabeth says they receive hundreds of applications for the jobs. The Guides are respected members of the community who receive a high level of training and often go on to get other jobs after gaining this experience, an exciting prospect for many who were previously out of work.

“The Health Guides are models of how we can work from outside, from the margins, right back into the mainstream and out again without being taken over. What usually happens is people who come from a marginal community join the mainstream and then they’re not part of the community they came from, they become professional. One of the keys to these Health Guides is that they remain lay people. They reinterpret what they’re told by clinicians into language that lay people can understand. That drive towards simplicity is something that we’re very passionate about. They move between and that movement between is creative.”

Health Guides provide accurate information about health services and help people to build confidence to understand and negotiate the system. Crucially, the Guides also listen to people’s experiences, record what they say and then try to change things by feeding information back into the NHS. Local people are involved at every stage. This helps to build up a sense of participation in mainstream life for people who are not used to feeling like they are party to anything. Elizabeth says many people haven’t got a sense of public life as being anything other than dangerous and so the public arena is something that people have to learn to have confidence in.

The issue of death management is an example of a somewhat unexpected but very real concern that was repeatedly raised by the Bengali and Somali communities during Health Guide sessions. Post-mortems are deemed unlawful in Islam unless there is a genuine need and in many cases simple steps taken before death can prevent their requirement. But many Muslim people were concerned that there is insufficient information given to them telling them why their relatives must have a post-mortem. Some were upset by the lack of respect shown to the body of the deceased and this often contributed to mistrust in the NHS. As a result of what they heard, SAfH and Health Launchpad are looking into creating a model that will see traditional invasive post-mortems replaced by an MRI scan.

Another example Elizabeth talks about is how the African-Caribbean community is excessively represented in the mental health system, especially young black men, who she says are perceived to be trouble, whether they are or not. “Britain has a particular problem where young black men are ending up in mental health institutions instead of running the country,” she says. And she believes that it is racism that is the problem.

She says that SAfH’s Mental Health Guides, who are mental health service users themselves, kept hearing from black men that that they were not getting access to talking therapies. However, white people were getting access to talking therapies. This, she says, is because the received wisdom in mental health services is that black men don’t like to talk. “It is just not true.” Elizabeth says. “Many of these local lads are looking for techniques other than drugs to manage their problems but these are not being offered to them. It is unfair.”

So this information was fed back into the system and at the same time central government thinking around mental health and talking therapies was also shifting. Because of this synergy of events Elizabeth says SAfH has got the agreement of the senior management in the mental health trust that people will always be asked about talking therapies by psychiatrists and care planners.

“A lot of the stuff produced within institutions on teaching people about ‘cultural competency’ is crap. Elizabeth says. “I think it leads to stereotyping and it just avoids individual relationship forming.” SafH runs informal lunchtime sessions in a local hospice so local people can talk frankly with staff about ‘difference.’ Elizabeth believes that engendering cultural curiosity can stop a lot of the inaction in the health sector. “Our bottom line is, if you’ve got a question about somebody or you’re not sure, you need to know what you don’t know. Don’t make assumptions. Ask. People will be perfectly happy to tell you how they want things to be.”

SAfH does a lot of work in the management of long term conditions (LTCs). It is funded by PCTs to run Self-Management courses taught by local people who themselves either live with or care for someone with a LTC. The methodology is similar to the Expert Patient Programme (EPP). However, one of the criticisms of the EPP is that it most benefits the people who are already negotiating the health system well; for example white middle class women. However, Elizabeth has shown that it is actually possible to successfully reach many marginalised groups this way, but she says working in the mother tongue, as opposed to using interpreters, dramatically shifts the model.

There is no shortage of interest in attending the Health Guide and Self-Management sessions. The main way that the organisation reaches people is through community centres. Elizabeth says there are community centres all over East London which are invaluable resources for tapping into public health. These are the places where people gather for all sorts of activities such as toddler’s groups, lunch clubs, women’s groups, ESOL classes and even to buy wholesale rice.

The one group that is not so easy to reach through these community centres are young men. But Elizabeth says they are not excluded because they are picked up through the mosques, “these are hopping places, lots of young men are proudly involved with them and thousands visit them every Friday.” Another group that SAfH wants to get more involved with are marginalised white people, some of whom, Elizabeth says, could be reached through churches.

Regardless of the exceptional work that SAfH has done in Hackney, Tower Hamlets and beyond, one of the main struggles Elizabeth is forced to deal with on a daily basis is securing funding. “We are like a concertina. If the funding is there we will grow and if the funding isn’t there we shrink. All our funding is short term so it is a real problem trying to plan.”

Due to her shift in emphasis towards securing funding around themes rather than individual projects and because some of the projects have now developed higher profiles, it is becoming a little easier to keep them going. But Elizabeth says the organisation has had to fight “tooth and nail” to develop the work it has done and to retain its organisational memory. She says that a good principle of community development, a subject in which she holds a post graduate diploma, is that you build on what is strong. But, because of lack of long-term funding Elizabeth says the organisation struggles not to build on sand the whole time.

Elizabeth is aware that scaling up projects nationally would be hard work. Time must be spent building up local relationships and networks in order to maintain a level of authenticity and integrity. But perhaps, rather than searching for quick fixes, this important work within communities needs to be done.

Before working for SAfH, Elizabeth worked as a consultant for voluntary organisations. She also worked within the NHS for 12 years. The NHS, according to Elizabeth, does not have the capacity to bridge the gap between services and local people. She believes the community has to be built up and have its own power base, “the NHS isn’t society, the NHS is the body serving the community. To have more and more people working in the NHS is just not realistic, it is just going to implode.”

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