“1 in 64”: the challenge facing one UK hospice

1 in 64. That’s the number of people that are experiencing homelessness in Luton. This places it just behind London on a national scale, whose number is 1 in 51.  

Mark Pedder, who is leading a new community outreach service at Keech Hospice Care, says that most people are surprised that Luton’s figure is higher than much bigger cities in the UK.

It is, he says, exacerbated by the fact that many members of Luton’s extremely diverse community – in which over 180 languages are spoken – also experience acute health issues.

And it’s due to this high number of people experiencing homelessness that Keech took action, as part of Luton’s Homelessness Partnership, to address the problems that this community faces trying to get palliative care.

Palliative care is not necessarily synonymous with end of life care. With over 20 years of experience as a nurse with Keech, Mark is keen to impress the fact that it’s a word with a much broader and evolving meaning than might be commonly understood.  

For instance, Mark’s role doesn’t involve constantly helping with symptom management. The people he helps face issues and challenges that are usually things often taken for granted – and they’re not necessarily dying:

“Chasing appointments when you're ill, trying to get through to a GP, trying to get to the hospital – are things that you or I would just be able to do,” explains Mark. “What we forget are all of the other pressures, like the finances, that someone's going to be able to manage to get to the hospital, or the travel costs.

“The fact that they have got to physically get themselves together, to move, to walk – even if they could walk that distance – it was going to be a big mission for them.”

Mark says that he noticed many of the people he supports were missing their medical appointments. That causes a knock-on effect: after a while of no shows, that person will have their appointments cancelled. What wasn’t being asked was why someone might be missing them.

That’s why Mark’s outreach role involves ‘advocating’ for that person. In the case of one patient who had missed their last two oncology appointments, he made sure that they were able to get to the third, and avoid having their treatment cancelled.

“Every person with a condition,” says Mark, “should have an advocate to be able to support them, like a link or a support worker in that sense. To at least follow up with where they are with their appointments…like, when is your blood test due? What's your next bit of treatment? How are you going to get there?”

He adds that when the new service was created, nobody really knew how it was going to work in practice. Even Mark admits that he thought that as a ‘palliative’ nurse, he might be involved with the typical duties of the role – but that proved otherwise.

“I thought I was going to be helping pain control or trying to adjust their medication, helping with a syringe driver…And I would do that if needed, but it’s been very minimal.”

Unexpectedly, an important part of Mark’s role has been encouraging other health services to contact him about potential referrals before they typically would have done:

“They would say, well, they're not dying yet, they're not deteriorating yet, so we'll contact you when we think that time is.

“So then my question was, how do you know when that time is? And also it's far better if you can reach into that patient earlier. If they are to deteriorate, I've got all of this information which will help and inform others to look after their individual needs.”

Marks explains that often, the majority of his patients are living well with their condition, albeit without the possibility of getting better. Importantly, if they aren’t living well, they will deteriorate much sooner.  

“If someone's emotional and spiritual and mental health gets worse, that can make their disease more progressive, just as much as physical symptoms. I don't think very many people appreciate that.”

Mark gives an example of how his role extends way beyond what anyone had envisaged for the outreach service:

“One patient in particular was so angry when I first saw him, he was angry with the world, angry with the NHS that had dismissed him previously, and the stigma that he's been subject to. I just needed to let him rant.

“By the end of our assessment he was in tears and he was happy to see me again. I had found out so much about him.

“And it's safe to say that he hadn't shared that information with his support worker or people who were trying to support him.”

According to Mark, it is this learning which lies at the heart of the problem: “People just need the time and the permission to offload. I think that's a unique part of this service – and a platform for any successful service, with enough time and resources.”

This experience circles back to Hospice UK’s 2021 report, ‘Equality in hospice and end of life care’.  

The report highlighted that homelessness alters the ability to access services, and that the specific experiences, beliefs, and needs of local people experiencing homelessness are far from homogenous.  

It also says that holistic care requires multi-sector expertise: hostel, social, and addiction or harm-reduction workers may have built up relationships with people who are homeless and vulnerably housed. These workers therefore have unique insights into the needs of those they serve, can help provide holistic palliative care, and crucially can act as trusted gateways into services.  

However, staff may be over-burdened and under-equipped, and require practical and emotional support in helping facilitate care at the end of life.

The ‘multi-sector’ expertise highlighted in the report resulted in Keech taking a seat on Luton’s Homeless Partnership, along with multidisciplinary teams that work across health and the community. And while the initial plan was to operate clinics in fixed locations, Mark says that in practice this didn’t pan out:

“Wherever we hold [the clinics], we're expecting that person to be able to get to them. And of course it's then only accessible if that person lives nearby.”

So instead, Mark started offering bespoke clinics: “I'll see a patient and if they want to be seen again, we'll book another appointment and I'll go where they are. We'll choose somewhere where they're happy to talk, or we'll walk and talk, which I do quite often. That suits them, so it suits me too. It's a very adaptable mould at present simply because it's so new.”

We asked Mark what he loves most about working with people experiencing homelessness. As you might expect, for someone who’s worked in palliative care and oncology for most of his working life, Mark’s sense of social injustice evokes the need to help people. He’s inspired to level the playing field for everyone – especially those that find it difficult to get support:  

“I think quite often we take it for granted that everybody can access care the same way that we can. And of course that's not the case.

“So we owe it to our community. We've got a multi-diverse community that has all of this support around them, but they probably don't know it's there. They've never needed it…or just haven't been told about it.”

Mark believes that’s a key part of the issue: many people just won't know a hospice service exists, and might avoid talking about it or getting any information until they really need to.  

It is, he says, a double-edged sword. “Both palliative care and homelessness have their own complexities. These are two really vulnerable areas and then they're coming together and compounding.”

“A guiding principle of palliative care,” adds Mark, “has always been that it’s for everyone, regardless of who they are or where they come from. So when you see someone with their palliative condition, you'll see them as a person and you'll see how best to help them.”

The insights Mark has gained in his outreach role could prove to be pioneering for hospice care providers around the country: that a successful service will work only if it is shaped accordingly to what each patient needs and what their agenda is.

“I think there is always a tendency to be instructed, or be in a fixed assessment, which is very common in the NHS. We need that process in many ways, but we must spend time with people and look at their needs – for instance, that this person might have been ill for such a long time and no one's addressed their mental health or emotional well-being.”

“I read in an article recently that perhaps we should ask, ‘what do you value most about palliative care,’ instead of trying to define it. I think that's probably the closest that we'll get to an understanding of what palliative care truly means: does it mean something different to everybody?”

It was this consideration that Mark, and Keech, took their time to think about when marketing their new outreach service to their local homeless communities. According to Mark, ‘palliative care’ wasn’t a widely understood term, and the team thought that calling it that might prove to be a barrier to people accessing the service:

“What we settled with was ‘living with a life limiting condition’. You could say that's quite broad. But it describes palliative care in a different way, and we hope that works. If it doesn't, we'll change it.  

“Part of my education is reminding people that you can have a palliative condition quite early on. You don't actually have to be dying, and they can still be supported.”

Working with patients who are experiencing homelessness has given the hospice an incredibly insightful – and unexpected – understanding of why they might not want to be admitted to an in-patient unit. Mark explains:

“We had a one patient who was really struggling with the confines of the room, and that we wanted to care for him – to him, that seemed quite threatening. He was used to doing things in his own routine, his own schedule, and suddenly we were telling him when his tablets were due, what times his meals should be, what time he should have a wash. That all became quite overwhelming for him. That was a big lesson and something that we knew we needed to adapt.”

Mark describes the story of another patient who found it difficult to settle in the hospice: “this patient was away from her community – her family were her friends that she was homeless with, and she was removed from that. So she took herself back into that environment.

“We supported her in the best way we could and we were able to offer bereavement support to some of her family afterwards too.

“We've always supported the homeless community, but I think we just need to be a bit more vigilant and think, ‘how are we going to do that?’”

As Mark explains, his role has given both him, and Keech, the chance to learn so much about the needs of people experiencing homelessness, and how to operate outside of typical hospice care models. This takes the form of everything from helping a vulnerable patient move into appropriate accommodation, helping someone with no access to any public funds to process their immigration status – and even helping someone with a job application.  

Mark says that he also often just checks in with the patient to make sure that they're looking after their cancer and post-treatment to make them less vulnerable.  

He adds that in assessments with a couple of his regular patients, 90% of the sessions involve emotional and spiritual support: “it’s an opportunity for them just to sound off and check in.”

The hospice outreach service project funded by the Masonic Charitable Foundation grant was a brand new concept in the community across Luton, Bedfordshire and Milton Keynes. Mark says that Keech feels lucky to be able to start the process – and hopes their work inspires other healthcare organisations:

“There is really good care that happens out there, but sometimes they do need support. What is noticeable is that quite a lot of the people working with the homeless community need support as well. That might be psychological support, or they might need help with bereavement.

“In Luton, five deaths happened last year between Christmas and New Year, so people might need debriefing about those – that’s a big impact on them as a community. They might have worked with them for a long time.  

“So I'm finding that that's a big part of this role as well, helping people just to talk about how they found looking after somebody and the impact it's had on themselves. It’s about giving people permission to debrief and share the load.”

Thank you to Mark Pedder and Keech Hospice Care for sharing their story.