The wellbeing services ellenor provides lie at the heart of the hospice’s total package of care. Operational Wellbeing Lead Andrew Lowden explains the importance of going beyond patients’ clinical needs and helping them and their families navigate the psycho-social complexities of living with a life-limiting condition
We may all have different perceptions of what a hospice is - and what it does. And it’s almost universally associated with death and dying. Andrew Lowden, our Wellbeing Lead is eager to dispel this myth: “We don't just deal with the death side of things, we actually deal with getting the most out of life.”
When a patient is diagnosed with a life limiting illness, he believes they face two choices. “You can either spend the rest of your life worrying about that illness and the effects that it will have on you and what the end of your life will look like. Or you come to a place where we'll talk it through and help you to cope with whatever life throws at you, over whatever time it throws it at you,” he explains.
More than physical
Although ellenor’s adult and children’s services teams provide clinical support (https://ellenor.org/our-care), our Wellbeing team is focused on helping people with life-limiting illnesses make the best of the time they have left.
While the basics of clinical care are important for those living with life-limiting illnesses, for patients these are sometimes not the primary priority, and it’s the non-clinical support that ellenor provides that make the greatest difference to these people, Andrew believes.
The reality, he says, is that patients become used to the clinical aspects of living with their condition and these are often managed by ensuring sufficient pain relief or managing medication side effects. “Clinical is the stuff that the doctors and nurses do, we do everything else besides that. We enable people to live with a life limiting illness by providing health, happiness and contentment, because that's what wellbeing is. And we do that through offering psycho-social support” he explains.
Patients worry about their finances, who will look after their family and their pets when they are gone and why this has happened to them. “It's this that keeps people awake at night,“ says Andrew. “It’s the bigger life and universe questions that I think come up as a result of knowing that your time on this earth is now very limited.”
Although support for various aspects of the total care package are available through the NHS or other organisations, ellenor provides it all. “Name me an agency that will do those things for you?” questions Andrew. “You won't find an agency that looks at the whole of you and says: ‘Right, let's tease all of this apart and see what it is that keeps you awake at night. What's stopping you leaving this planet feeling much more comfortable than you do at the moment? And that’s where Wellbeing comes in.”
A wide range of services
Andrew’s team focuses on seven areas of wellbeing support:
- Counselling via our dedicated counsellors
- Family support
- Complementary therapies, e.g. aromatherapy, reflexology, Reiki, massage and mindfulness
- Clinical Therapies – Physiotherapy & Occupational Therapy
- Living Well – the day services which ellenor provide
“A huge part of this is the psychological support, which is about helping you to feel as well as you can possibly feel. All of those services will help you to feel better about money, they'll help your family to feel less stressed and give you permission to talk to your family about what's worrying you. They will help you to relax more through massage and reflexology. So the counselling will not only help you the patient but will also see your family through your illness and beyond, into bereavement as well,” he elaborates.
The most used service may be a surprise. “What we get referrals for every single day, without fail, is the financial support service. People are really strapped, and their disease has hit them when they might have been working and they are now staying at home a lot longer, having the heating on and their eating habits change. They need to park at the hospital 10 times a week. It's costing them a fortune, so money becomes a huge issue for them.”
ellenor helps people apply for financial support through the benefits system and help with parking and heating costs. “It's money that they wouldn't have got had they not known that they were entitled to it. Patients don't have the energy to apply and to be rejected and to appeal. We do all of that for them and at the end of it, there is money in their account so at least they don't have to worry about that,” says Andrew.
Another benefit ellenor offers over national organisations, he adds, is that the team gets to know patients and their families very well. “I've never worked with quite a team like it. They are just the most caring people I think I've ever worked with - and they are very local people, they know these families and they continue those links for those families.”
It also helps that – as a charity that sits outside any NHS funding or restrictions – the ellenor team is far less time pressured. This means the team has more time available for patients, says Andrew: “You can sit down and have a drink with them, and you can spend an hour with them talking about life the universe and everything. And really get to know them to get to know what makes them tick.”
The personalised approach that ellenor provides allows patients and their families to utilise the wellbeing services that best meet their individual needs. A key factor is to also meet other people facing the same or similar issues, which is why we run an extensive programme of group meetings each week.
These include arts and crafts, mindfulness, gardening, seated exercise, a carers group and several bereavement groups, in addition to a social drop-in session (pre-COVID). However Andrew is keen to see more people get involved. “I think many of our groups and classes are really under utilised”.
We also runs a 12-week programme called Living Well. Patients come to the hospice to participate in five hours of structured services every Monday to Thursday. This is tailored to the patient’s own needs. “It's about rehabilitation,” explains Andrew. “It's about what matters to you. What do you want your goal to be? Do you want to become more mobile; do you want to be able to go to a supermarket; or do you want to look at your finances? We focus on that thing and try to make that happen.”
This active approach allows patients to work towards a goal and has resulted in a remarkable shift in wellbeing, with patients transitioning from having ‘daycare’ as a sick person to someone able to achieve what they want to do.
Although the COVID-19 pandemic has had a profound effect on these groups, many now take place on Zoom or via telephone.
Feedback from patients and their families show that the wellbeing services are a lifeline to people, both during illness and the bereavement period afterwards.
Additional funding would mean the charity could help more people through this difficult time and allow those with limited time to live the life they want to lead to the fullest.