The Forum was held at the Paddington Arts Centre, organised and chaired by Nafsika Thalassis (NT). This was the first face to face stakeholder BME HF meeting since the pandemic.
It was attended by a range of stakeholders from faith group, BAME community leaders and LBGTQ+ representatives and end of life care formed part of the discussion. Key themes from the discussion included the following barriers:
- Equipment setup - there have been issues with setting up medical equipment in rooms of the patient’s property. This was due to lack of communication between social services and care providers and not understanding the layout of the patient’s home.
- Gender - many patients from certain faith groups prefer the same gender carers as them due to comfortability and religious reasons. Male patients prefer family female members to care for them, if the carer is not from the same faith. Another note was that some patients become more spiritual and would like the carers providing care to share the same values (for example the same religion).
- Staff - Although patients and families prefer to have staff/carers from the same cultural background, speaking the same languages or even the same religion, it was understood, that this was probably not possible. However, a greater understanding of cultural sensitivities is definitely needed. It was also noted that some carers, come with a stigma that makes it very difficult to obtain care sufficiently.
- Patients' families – It was noted that patients’ families can also have a negative attitude towards certain carers from certain backgrounds, particularly from certain ethnic groups.
- Culture - in some cultures families automatically take on the role to care for their loved ones. These families are often unaware about end of life services, wouldn’t use end of life services or the care package set-up hasn’t happened.
Attendees were then asked how the service can overcome some of these cultural and faith barriers. The answers given included:
- Individual approach - before the whole package is provided, discussions should take place with the individual and their loved ones in regards to their expectations, needs and wants, treating individuals on a case by case basis and not implementing a one size fits all approach.
- Training - there needs to be a greater emphasis on equality based training for carers. If carers are unaware of cultural and faith considerations, they will just follow the protocols from the training they have received. This may not be straightforward but individual patients, should be treated by their individual needs and wants as well as their loved ones who are involved in their end of life process. These are carers and the technical skills should be provided to the carers rather than just factual/generic training.
- Digital care - there must be greater things we could do with digital care although obviously this wouldn’t be for everyone. But for those who have digital access this could be used to benefit communications, especially for those patients who understand information in their own language.
- The Talk - the medical team often does not seem to have the correct training in how to relay the message of end of life to the patient or to the family.
- Experiences - good positive end of life stories and experiences would have a big effect across communities. If some community groups are unaware or have only heard about negative experiences, this becomes the prevailing message. People respond to stories, that they either experience or hear. For example, the GP is a constant - they know where they are and they can make appointments, see them, or talk on the phone to them. We don’t expect end of life services to be a constant but there could be creative ways where there is an ongoing dialogue. That could be done through the voluntary sector and some faith groups and attending meetings like this and not just when you need us (e.g. today’s conversation). These communities need to be properly engaged and consulted in the outcome.