‘It’s a happy place to be in, it’s a relaxed place to be in. It’s a lovely environment where we are just trying to help people have the best life they can until they can’t.’

That’s the Medical Director for Hospice Isle of Man, Justine Needham, speaking. Sat next to her are Nurse Consultant and Community Service Lead Cheryl Young, and Vicky Wilson who is Head of Children, Young People, Inpatient Services and Therapies.

‘I think people have this pre-conception about what we do, and it would be lovely if the immediate picture that comes into someone’s head when they say the word Hospice, isn’t death or dying’, Justine continues. ‘We’re giving patients an opportunity to have relief from their symptoms that nobody else can get on top of. We are in a unique situation where we can bring someone into a peaceful and safe environment, work on getting their medications right and then allow them to go home again. The death and dying bits are just the end of the journey, and while yes, that is part of our role here at Hospice, it is only one element of what we do and it’s a shame that the rest of it gets overlooked.’

‘And if we’re talking about what everyone thinks we do, the death and dying, we’re trying to change how this is viewed. Our role is to make sure this is a dignified experience as it is a memory that stays with the family forever, because if it isn’t well managed in the right environment, it can have a massive impact. It’s not just for the patient, it’s for the family as well.’

For those of you who don’t know about Hospice Isle of Man, it’s a charity that provides palliative and end of life care (supportive care for someone who has a life-limiting illness that has no cure) – in their facility, at home, and in the community (a hospital or a care or nursing home). There is also a purpose-built children’s facility, Rebecca House, within the building (more on that another day). However, that doesn’t touch the surface in really explaining what they do. The charity does so much more than even the most observant of us probably even realise.

‘I think people are often quite surprised about the breadth of services we offer,’ says Vicky. ‘Because Hospice doesn’t only support patients, it also does what it can to take the weight off the shoulders of those caring for loved ones. The families and those who are the main carers for the patient outside the Hospice building have access to psychological support, bereavement counselling, complementary therapies, Hospice at Home (an on call 24/7 service), along with respite care.’

Cheryl steps in at this point to highlight the Clinical Nurse Specialists (CNS) who are essentially the spearhead of the patient journey through Hospice and there for ongoing support for the patients and their families.

‘The CNS team oversees patient care, making sure each individual gets the holistic support they need. Whilst many think the In-patient Unit (IPU) is the only place where you can receive symptom management and support, the CNS team also does this in the community. They enable patients to receive dignified care in the comfort and familiarity of their own homes as well as supporting and educating carers and families through this process. This is far from the misconception that hospice care is solely linked to the building and the fear that can be associated with that.’

But what does it mean when Hospice says it takes a holistic approach to care?

‘We need to break the myth that everybody who is referred [to Hospice] is imminently dying, that isn’t the case’ Cheryl explains. ‘The majority of referrals are not for death and dying, they’re for symptom management. It’s about helping people live well, sorting out the pain, sorting out the nausea, sorting out psychological support. We talk about total pain, so we know it’s not just physical, it’s psychological as well.’

‘All the staff are excellent at looking at the whole person’, Vicky adds. ‘It’s about assessing how they are in terms of general wellbeing. It’s about creating those opportunities that probably in a lot of acute [hospital] settings you wouldn’t think about. If a patient says to us, I really want to go home one last time or go to the beach, we are all about making that happen in whatever way we can.’

This tied into Vicky talking about the FAB group which supports patients with coping mechanisms around ‘fatigue and breathlessness’. Fab by name, fab by nature.

‘The FAB group is all about setting patient goals, what does the patient want to achieve? Do they want to walk to the end of their road to get to the shop? Because that’s the most important thing, that’s our focus; the patient achieving their goals. We have to be able to solve problems.’ And that might even involve a member of the team adopting a dog!

There’s also a strong emphasis on education as the team works hard to upskill other organisations in the community to deliver excellent palliative care.

‘We know we can’t look after every single person on the Isle of Man and the only way to ensure everybody receives the same care is by training others to deliver that,’ says Cheryl.

Justine agrees that part of their role is to extend their expertise. ‘Obviously we have a set number of beds [11] and if they are full and someone needs one, we have to find other ways of supporting those patients.’

What became apparent was the passion and dedication hospice staff have for their work. Cheryl really rounded it up, saying ‘It is the greatest gift you can give, that a person dies peacefully and with dignity. For them and especially the family. And it’s a privilege to be part of this.’

Adding to that, Vicky says, ‘What I always say to people, is that we can’t change someone’s diagnosis. We can’t change why they have ended up here, we can’t change what has happened to them. But from the time they are on our case load, if we can make an awful situation a tiny bit more bearable then that’s the best thing we can do. That’s our job.’

I asked the team, ‘why is the work that Hospice does so important in the community? And what would happen if we didn’t have it?’ A pause followed until Justine broke the silence.

‘We’re all going to die’, she said with a dryness that had us laughing. ‘I mean we all are going to die, it’s a matter of fact so it’s an inevitability that we’re all going to need input at some point at the end of our lives. Hospice provides choice, support and dignity during this final chapter. Without Hospice, people suffering from life limiting illnesses would have a limited quality of life during their palliative phase, and potentially a shorter one too, and limited choice in how they wish to be cared for at end of life.’

If ever there was a defining moment in a debate of Hospice’s deservedness of funds, that was it.