Interview with BME Health Forum director 08 February 2022

Hammersmith & Fulham, Kensington & Chelsea and Westminster, BME Health Forum Director, Nafsika Butler-Thalasis (Cllr) interview

  1. In your opinion, why do you think there is inequity of community based palliative care use from ethnic minorities?

Firstly, there is a lack of confidence for people from faith and ethnic minorities for using this service.

Secondly, by and large, many people don’t know what palliative care means – you need to find another term? People with English, wouldn’t know what this means at all

  • ‘Is End of life care, better, more appropriate?

Yes, it is clear what it is, we would know what it means but that is very scary for many. It is not a subject that is hardly approached, unless you are or family member is dying. This service has never been raised within our group meetings. Maybe from you, sometime ago. My members wouldn’t know how to access EoL care, unless referred by their GP?

  1. In your opinion, where would you say, most of the people you support, would prefer to end their life, if given the choice, Home, Hospice or Hospital

This is really mixed, fewer would probably prefer to be cared for at home, because they don’t trust the medical support would be there. The experts are in the hospital, not at home. They know that all the medical equipment and medication, clinicians and nursing staff are in the hospital. They would prefer to visit, bring their food and care for the family member with doctors nearby.

If they don’t know how the system works, what else is there? If they do know, then they hear about stories of being let down:

  • where carers don’t always turn up.
  • Waiting for the district nurse
  • GPs not visiting the home
  • Confusion about the medication
  • Not understanding customs and beliefs.
  • Lack of translation –  unlikely to clear communication

In terms of hospices, they are definitely unknown to many. They wouldn’t know when and how they could be accessed, unless told by someone they trust. For some, hospices are trusted and respected in the community. But you have to know they are there and what they do.

  • If there was greater commitment to provide the care that people wanted at home or needed at home, would that change the view?

Yes, it would help, but there is a gender issue. More of the men probably prefer to end their life in their own home and generally being cared for by the wife, daughter or daughter in-law. There would be an expectation that the female in the household does the caring.

  • What about female carers, if they were referred? Or would they need to be from their faith or ethnic background?

Of course that would help, if they were from the same ethnic grouping and spoke the language. But the key is knowing that caring is accessible. There is a belief, by the system, that this is a cultural thing – which, for some things it is. But a cultural sensitivity and knowing how support can be accessed would help.

This is now an interesting time to really promote palliative community care, because since Covid-19 there is a growing uncertainty about going to hospital – in other words, the hospital ‘trust’ has lessened.

  1. What would encourage trust and confidence?

Positive E of Life stories – where the system has worked well for ethnic minorities, their experiences. What people need is assurance. For example, the woman at home on her own receiving palliative care, who informs her when the carers are coming? Does she understand in her language? If the carers can’t attend for one visit, how does she know? This is like, where enhanced community support would benefit

You see, people have very strong sense of duty to look after their loved ones. It’s not ideal to look after someone at home, but you need to have a lot of confidence that the system would work for you at home.

I go back to the hospitals, people have a lot of confidence in them, it’s where you normally get the best care. The family visit day by day, but you know that your love one is eating and drinking, sheets are changed, family are and he/she are not lonely.

  1. Let's take my dad situation: following a long period of being in and out of hospital, where he didn’t want to be, we were told by the hospital that there wasn’t anything else that they could do. Now his choice was to be at home, care home and hospice care. He chose home. We have to. We have to we have to reaffirm the palliative care. So, in other words, hospital is no longer the option.

Yeah, so I think if somebody has been told that clearly, assured that there's nothing more they can do, and the whole family understand and there's nothing complicated about their care, then people are happy to do it at home. But you have to convince people of assurance, I think these things, in ethnic minority communities, work by reputation and word of mouth, that's how it works in communities.

So if people hear of other having excellent care at home, then they will feel more confident about doing it themselves.

But think of this, and this is an assumption. Referral is made to any service, could be palliative care, nobody checks, a week, two weeks a month later they hear nothing. They have to have the confidence, like you did, ringing the GP or district nurse, they are not sure what to say. If it is not easy and straightforward, they lose the trust and confidence, the assurance has gone.

Your story about Dad was great because people can empathise and relate – that is what people from ethnic minorities need to be able to understand and know that:

  • Can use translators when they need to
  • They understand the system and support
  • There is a willingness to take into consideration their customs and beliefs
  • They know what to do when something breaks down
  • There are positives stories and experiences.

Remember this is scary and frightening time and not an easy area to tackle.

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