Bridging the gap: the Community Connector on a mission

In South Asian communities, end-of-life care is often stigmatised. It can be considered unacceptable that someone outside the family should provide this care. As a result, many people who would greatly benefit from receiving hospice care, aren't.

Hospices across the UK are keen to better understand the voices of their communities and embed hospices within them. It's people like Mohammed who play a key part in building these relationships, and opening up the idea of hospice care to people in the community – who typically either wouldn’t have known it existed or considered it an option.

However, Mohammed says that only 12 months ago, the concept of a hospice was brand new, even to him.

“In Ramadan last year, two ambassadors from Keech Hospice care came to my local mosque – they were fundraising for my post. Before that I wasn’t aware of Keech Hospice or what they did. That got me intrigued, so I started inquiring, learning about hospice care – and then I applied for the role. Now here I am.

“I was a full time Imam before applying for this role”, says Mohammed, “and I'm still connected within the community. I've always had a good relationship there and the main thing was helping the community in any way, shape or form."

So what was it that drew Mohammed to the idea of working for a hospice?

“It's really connected to my religion. One of the key aspects is that we care for those who are sick, especially those towards the end of life. I want to be that key connection to help those individuals get the best moments of their final stages.”

The role of Community Connector is part of a University of Bedfordshire research programme, funded by the National Institute for Health Research (NIHR). The project explores perceptions of hospice care in the community: what the culturally appropriate services for end of life care are in this community; improving the communications between the service providers and the community; understanding the communities’ and individuals’ approaches to death, and their priorities and fears. 

With the introduction of Mohammed’s role, the hospice aims to navigate the system better and make it better for the community, even down to making sure that terminology used in the sector is appropriate for the community. 

Interestingly, the role isn’t funded by the hospice, the Government or university grants – but from the South Asian community themselves. Mohammed believes that this is a clear sign of how important an issue the community regards end of life care:

But underlying the community’s desire to know more about end of life care were some preconceptions about what hospices were – often seen as what Mohammed describes as “doom and gloom”, and that hospices “take you away”.

Mohammed’s project work includes initiatives aimed at breaking these stigmas and showing community faith leaders what hospice care is really like:

“Generally the perspective of a hospice is that it compares to a hospital. The hospital isn’t a nice place. It's just one block of beds together – they think it's like that.

“The cultural norm is that it's an honour that they take care of their loved ones towards the end of life, especially the elderly. So their understanding is that ‘if we engage with the hospice, they're going to take that away from us.’ They see a lot of red flags.”

Mohammed explains how showing the hospice to faith leaders is turning those ideas around.

“At the beginning of the tours, we ask to them to write down three words that describe what a hospice means to them. Most of them had all these negative connotations. But then after the tour, it was completely opposite. They had no idea that there was this service which was available to them for free.

“That was another thing. They think there's a cost to it. They were surprised to find out that it's free for anyone to use.”

The very first tour Mohammed gave of Keech in his Community Connector role was to a very important guest – his mum.

“English isn’t her first language, so I brought her in and showed her around and what we offer, translating it into Bengali, our mother tongue. She was amazed! And she said, ‘if I knew this was available, I would have used this service for my mum and my grandma.’”

Religious practices were also a big concern for the faith leaders: 

“There were reservations in terms of the dietary requirements and cultural norms – whether they would be allowed or permitted in in the hospice. So now we provide Muslim community packs that contain things that they would use towards the end of life or for a patient who is ill. We’re renovating a room for prayer space dedicated for the Muslim community. 

“The food here is halal – they weren’t aware of that. Generally in the hospital it would be vegetarian or they wouldn’t trust the halal chicken. So the family would bring food from the outside in. But we're saying that we can make food according to your needs.”

Part of the messaging that Mohammed has created includes an unofficial mission statement – which they’ve shared via a postcard design:

“We came up with a motto, actually, and we are aiming to embed it in the minds of the South Asian community: that your wishes, your traditions, your beliefs, your values, your morals – all of this will be at the centre of the care that we provide for you.”

Whilst faith leaders have a huge role in their communities as a source of guidance and information, Mohammed has also been approaching the Community Connector role from other perspectives.

“I gave a presentation at the University of Bedfordshire that generated a lot of interest – it has one of the most diverse student populations in the whole country, and it got good engagement. I’ve also just had training on how to run art workshops as part of ‘No Barriers Here’, which uses art to facilitate conversations about advanced care planning. People can express their thoughts, opinions, or what is important to them. 

"We’re also part of Luton Fairness Taskforce, where members of different organisations work with Luton Council tackling different issues ranging from homelessness, accessibility to health and housing, and how we can improve the services for the local community."

Mohammed role is a brand new one at Keech. This means that he can operate in a brand new space, with plenty of low-hanging fruit – but also comes with a unique set of challenges:

“I was trying to be involved in everything and doing a lot – some ideas work, and some of them don’t! But the great thing is that it's all a learning curve."

There’s also an issue of not having a large peer support network to turn to – yet. He's one of a small but growing group of hospice professionals working with their local communities. 

“It's so important," says Mohammed, "to have that dedicated person for a specific community to engage with them, understand their needs, and bring those insights back. Working together, being that bridge.”

There is clearly huge potential for the Community Connector model. Mohammed explains:

“I think other hospices might take on the community connectors, not just for the South Asian community, but different communities too. We can see other organisations taking on this idea and engaging better with other communities.

"Even within Keech, we’re looking to do exactly that – to make sure that we become a Hospice for all.”

Thank you to Mohammed for sharing his story for Hospice Care Week.