‘While we’re incredibly grateful for any donation, media coverage often focuses on cheque presentations. My worry is that this only perpetuates the narrative that Hospice gets all the money’.

That’s John Knight, the CEO of Hospice Isle of Man, a friendly chap I was speaking with to find out more about one of the Island’s most prominent charities.

Walking into Hospice wasn’t anywhere near as depressing as I was expecting it to be. In fact, it wasn’t depressing at all. The building was as light and vibrant as the lovely people working there.

There can’t be many people on the Island who don’t know about/ haven’t heard of/ haven’t known someone who has been touched by Hospice Isle of Man. Nearly half of all deaths in 2023 (49.3%) on the Island were managed by one of its many services. It’s built up a wide-reaching reputation in the community, however, that reputation might not be as accurate as you may think. So, with the help of John, and the wider team over the coming months, it’s time to debunk some myths about Hospice Isle of Man.

John was previously Chief Executive of a Hospice in Leicestershire for 7 years and a trustee of Hospice UK. ‘The availability and, I genuinely feel, the quality of Hospice care on the Isle of Man is superior to much of that in the UK’ John tells me after I asked about the differences between here and his previous place of work.

But before we get ahead of ourselves, do members of the public understand what Hospice IOM actually does?

‘I think they have an immediate image of Hospice’ says John, ‘people talk about how Hospice is a place where you go to die, a place that would be depressing and hard to cope with and then people come to Hospice and realise it’s actually a bright, cheery place and there is a lot more going on in the building and indeed out in the community.’

In a similar vein to Rowan Atkinson in Love Actually when he says to Alan Rickman ‘this isn’t just a bag. This is so much more than a bag’, Hospice is so much more than what many think it is. End of life care is just the tip of the iceberg.

Hospice doesn’t solely work with people in the last days or weeks of their life, the charity provides palliative care to improve patient’s quality of life throughout illnesses that have no cure and have specialist palliative care needs. It takes an all-encompassing approach, offering a range of therapies as well as medicine for patient’s physical, emotional, and spiritual wellbeing.

‘There is a kind of graduation of services that come long before end of life care’ John tells me, listing everything from respite care to medication adjustment for symptom management and pain control. They really do loads, I saw it with my own eyes when we had a tour of the building. They’ve got rehab activity rooms, therapy spaces, aromatherapy massage rooms, social areas, lovely gardens, the list goes on.

Hospice also doesn’t solely work to support patients. There’s a huge focus on patients’ family and carers who have access to respite care, practical help, along with emotional and psychological support with trained therapists.

John recounted how he once heard a family member describe their experience, ‘Time in hospice is when we can become family members again and not carers because we’re no longer worrying about medication’. And to me this really captures the essence of what Hospice is all about.

I asked John what he’d like to see in Hospice’s future. In terms of direct patient care, he really wants to help reduce the pressure on Manx Care and increase the hours of their clinical nurse specialist who spends time in Noble’s to identify who is reaching end of life and who should be transferred to Hospice. He also wants to expand the Hospice at home service; the only 24/7 on call service on the Isle of Man. They’d like to look at developing that service so Hospice staff can stay through the night at a patient’s house, allowing carers to have a good night’s sleep and be refreshed to continue the care during the day. The service costs around £600 thousand a year to run. To expand that, they’d have to essentially double the money they get.

Hospice can come across like the big dog of local charities. Often it feels like not a week goes by without someone climbing Kilimanjaro, juggling fire for 57 hours straight, or eating enough hot dogs to sink a small battleship in aid of Hospice. But this reputation can actually put people off raising funds for the charity because they assume they’ve got enough already. This isn’t true.

‘It’s difficult because we do get a lot of support, but the quantum of funding required to keep Hospice going at its current level is very significant’ John tells me.

After having a tour of the building and seeing the amount of services being offered to make sure people suffering from life-limiting illnesses and their families/ carers have quality of life (as is their basic human right) I can see why the cost to run Hospice is significant. After explaining some, what to me felt like, advanced math, John told me that 81pence of every pound donated goes to patient care, which, in the world of charities, shows shows low central administration and management costs. So, the rise in costs isn’t through employing more and more people, it actually comes from external forces out of Hospice’s control.

‘We’re competing for nurses, healthcare assistants, and doctors and over the past four years, that cost of their employment has risen by 25%. It’s important for me that the Manx public know that the expense is generated by outside forces, and we don’t feel that a reduction in headcount, certainly clinically, would be a safe or wise thing to do.’

Someone’s next argument could be to tell Hospice to reduce its services, but John believes ‘reducing services in a community where the ageing population is increasing, and people are living longer with more complex needs doesn’t seem logical.’

Hospice needs £6.8 million each year to operate. The services they provide to people in need of palliative and end of life care are free, and they will always remain so. So, though incredibly grateful for the donations they get from you generous souls in the public, they are never in a position where the future looks stable. It’s turning into a persistent problem for the charity, which is starting to look at alternative ways to be sustainable.

‘Somewhere, I think there should be a scrutiny of the raison d’etre (‘reason for being’ for those of you not studying French) and an examination of what other charities who exist on the Isle of Man are offering. And it is tricky. I appreciate people set charities up because they’re passionate about something that’s happened to a family member or a situation that’s happened to themselves and it’s not to disrespect that. The truth is, with over 600 charities on the Isle of Man currently and what must definitely be a limited pool of funding, year on year the competition for that money is increasing.’

With this partially wonderful, partially problematic situation of the increasing number of local charities, John says it leads to a conversation about commerciality rather than relying on increased government funding when things get tough.

‘Where else do you turn to generate more funds? This year, I think we have 33 fund raising events. I think we’re close to saturation with the team’s capacity. So, I feel that, not just for Hospice but the voluntary sector, turning to more commercial activities is almost an inevitability. Charities have to think beyond charity shops and focus on what we have to do commercially to get much-needed money.’

‘I’m really excited about the commercial agenda of charities – I think there is a lot that charities can do. It’s not a new thing but I think it will be more visible – certainly in an Island community and people will question why Hospice are doing that. But at the end of the day, we must think about growing income for the future benefit of the Island’s residents.’

John raised an interesting notion of charities offering similar services merging or increasing collaborative efforts to use the publics funds more wisely. It makes total sense to me but, John tells me the practicalities of that rely on the board of governors across multiple charities sharing a strategic vision and being open to conversations. It’s an idea John thinks could positively impact the voluntary sector and something he’s hoping to progress over the coming months.

Government’s aim to grow the number of Island residents combined with our aging population, an ever-growing pool of organisations wanting to do their bit to help people, along with purse strings being pulled ever tighter, is causing repetitive challenges for charities Island-wide.

Most communities are fortunate to have a hospice, but few are fortunate to have one the quality of ours. It might not be nice to think about but let’s be honest, it’s likely that we will all have to face end of life care or a life-limiting illness at some point, if not for ourselves, for a loved one, so we need to ask ourselves.

How we would feel about getting specialist care when faced with a life-limiting illness if we didn’t have Hospice as we know it?