One of the strongest messages we heard in the workshops was that all too often dementia services were designed with the needs of people from white communities in mind. Services were delivered along the lines of a ‘one-size-fits-all’ model, and when the needs of people and families from non-white communities were considered, this was considered an afterthought.
It’s been far too long that services have said, here we are, come to us. But when people come into the services, then it’s one size fits all … So I think services need to … go into the community, with the voluntary and community organisations that are already in there … It’s a culture change, it’s the services that need to change their culture completely.
Often the experience of people from South Asian communities was that dementia services were not intended for them. This might take the form of meeting on a Friday (which is a religious day) or in a church hall or working to a calendar which, while it accommodates the Easter holiday, does not recognise Ramadan. One of our contributors, a family carer, described this as a ‘Caucasian-centric’ service model. We were told that people from South Asian communities had to work “ten times harder” to justify themselves and their need for support.
We’re only there to tick a box … I’m a member of a CCG, and sometimes I feel that I’m just there so that they can say that they’ve talked from somebody from a BME community
Recommendations arising from our workshops:
- Providing equality of services.
- Carry out an Equality Impact Assessment (e.g. https://eput.nhs.uk/wp-content/uploads/2014/02/eiaguidance.pdf) for all new service developments to provide evidence that they meet the requirements of the Public Sector Equality Duty or otherwise reduce health inequality.
- Funding for all dementia services should be dependent on organisations demonstrating that they have met equality targets.
- Auditing services. Existing dementia services should:
- Ensure that data about the ethnicity of service users is collected. While most services ask practitioners to do this, they may not always do so either because they feel embarrassed to ask service users or because they don’t see the point in doing so.
- Use this data to audit the take up of services broken down by clients’ ethnicity. Population projections for older (https://www.poppi.org.uk) and younger (https://www.pansi.org.uk) people can help to identify anticipated levels of uptake, against which current levels of service provision can be compared.
- Where inequalities of service uptake are identified, service managers need to develop an action plan to remedy this. Commissioners should consider innovative methods of funding services to ensure equity of uptake.
- Greater flexibility about service provision.
Statutory services should be more flexible around service provision, including the hours and days that they will be open. For instance, during Ramadan, services may need to be available in the evenings, not just during the day.
- Continuity of funding.
Funding for community sector organisations should be on the same basis as for statutory services, rather than being based around specific projects that perhaps lasts for just one or two years.
We’re just going full circles … It’s a tick box exercise. You cannot expect miracles overnight … BAME communities have been disadvantaged, ignored for such a long time that they don’t trust people now … You have to build that trust, and how do you build that trust? You need to be consistent, you need to make good the promises you make, you need to see them through … Change will be slow, but you have to be persistent.
- The importance of having different faces visible.
Workshop participants felt strongly that it was important both for services to have a more ethnically diverse workforce and for health and social care professionals from South Asian communities to be more visible. This was seen as central to increasing trust and increasing the likelihood that people will access these services. Ensuring that there is diversity at all levels requires services to identify appropriate recruitment strategies and to actively manage career progression.