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10th October 2022

St Helena Hospice is marking national Hospice Care Week (10th – 14th October) by dispelling common myths about hospices.

Hospice care is holistic, meaning the care is for the whole person as an individual, and their loved ones are supported too at what is a difficult time.

Myth - You have to pay for hospice care

FALSE! All St Helena Hospice services and bereavement support are provided free of charge, however they are not free to provide; it costs £30,000 per day to provide the care. While 37% of St Helena Hospice’s funding comes from the NHS, it relies on the generosity of the community to raise the remaining 63% through donations, fundraising, visiting its charity shops, playing its lottery and leaving gifts in Wills. 

Myth - Hospice care only happens in the Hospice building

FALSE! Hospice care can happen at home or in the 18 bed Hospice building in Highwoods, Colchester. More than 90% of St Helena Hospice patients are supported and cared for in a home setting, such as their own home or a care home. The Hospice in the Home team visits people across north east Essex, supporting them and their families at home, and helping people to make their own choices and live with dignity.

Hospice in the Home includes nurse specialists, physiotherapist and occupational therapists, family support and counsellors. SinglePoint, including rapid response nurses, is available 24 hours a day, 7 days a week every day of the year. Additionally, the Virtual Ward healthcare assistants provide personal care for people at home thought to be in the last 12 weeks of life.

St Helena Hospice works very closely with colleagues from other local health and social care providers such as GPs, community nurses and social services, to ensure the best possible care is provided to those in need.

Myth - The Hospice is a place you go to die

Dr Emma Tempest, medical director and a consultant at St Helena, said:

FALSE! We admit people into the Hospice for lots of different reasons. 

“It's true that some people get to the end of their life and they, for whatever reason, don't want to die at home and feel more comfortable dying somewhere where we can support them and many of those people do die with us.

“But we also have a lot of patients that come in to manage their symptoms or other worries they've got about their illness and we aim to get on top of their symptoms and then send them home. Last year [2021/22] 46% of patients who were admitted were discharged to their preferred place of care. For a lot of people, home is where they want to be for as much time as they possibly can.

“When people talk about working in maternity services, they often talk about being present at that moment when someone is brought into the world and what an amazing privilege that is. I feel the same about being there at the end of someone's life, that it's a real privilege to be with someone and if I can help make them more comfortable or achieve something that they want to do before they die then that's why we do it.”

Image: Dr Emma Tempest

Dr Emma Tempest, medical director

Myth - A Hospice is such a sad place to work in

Niamh Eve, Hospice matron, said:

FALSE! Of course we have lots of poorly people staying with us at the Hospice. We have people that do die here but actually what we're about is living and living right until the last day of your life. 

“Hospice is not about death, we don't focus on that. We focus on people doing joyful things and spending that time with their family. A lot of people that come here say they didn't expect it to be like this. This is a really lovely space. It's very calming. And what I would say to people is we're here and we get to care for people in such a beautiful environment, with our specialists and staff that are trained in palliative care.

“What a blessing that we're able to do that and able to look after patients and their families in such a lovely way. We are able to do things like bring a horse in to see a patient or bring in their pet parrot or guinea pigs.

"We have our fantastic Hospice cat Paddy and the Pets As Therapy dog as well that comes in and brings people lots of joy.  

Image: matron Niamh Eve

Niamh Eve, Hospice matron

“There was someone who really loved dogs so some staff brought in their puppies and dogs to visit that patient. If we know that someone likes something we will go above and beyond to make sure that we help them experience it.

"We've had someone come in who had no one to look after their dog, so he looked after his dog while he was here until he wasn't as well, and then the staff looked after the dog. That was really important to him that his dog, his companion, was here with him and we helped that to happen.

“There was one young person who wanted to dip their feet in the sea one last time and we couldn't take them out, so we brought the beach to them.

“We embody holistic care; that person is not just their disease, it's not just physical. They are a person. They have a life and they have their future. We don't know how long that's going to be but that's still important. We allow people to live and we allow people to enjoy the things that they enjoy. I think we do so much good.”

Myth - Hospice care is not available for everyone

Emma Jackson, Hospice in the Home clinical nurse specialist, said:

FALSE! Hospice care is for everyone. We see patients from the age of 16 plus. We have a lot of young patients as well as older with different life limiting illnesses, not only with cancer. I'd say a large proportion of my caseload is younger patients and a lot of them they have young families. 

“I bring our Hospice services to them in their homes by visiting them and build up a relationship to get them used to liaising with myself so then we can bring other hospice services to them when they need it.

“When I knock on someone’s door to someone in their 30s who has little children running around, it is difficult at times. I'm a similar age and I have young children myself so it can be quite emotive, but I also like to think that being a similar age, I can hopefully understand what they're feeling and support them with that.

“I think when I arrive for the first time some people are just terrified of the fact that I’m from the Hospice and what that means. But some people are just so grateful for the help and support that they're just so happy that you're there. Hopefully by the end of that first visit we've dispelled some myths and made them feel comfortable with us and happy for us to help them.

Image: Nurse Emma Jackson

Emma Jackson, Hospice in the Home clinical nurse specialist

“Through our Safe Harbour project, we reach out to people who traditionally have had difficulty accessing hospice services, such as people who are homeless, have a history of drug and alcohol addiction, people with a mental health illness, Black, Asian and minority ethnic group communities, LGBTQ+, refugees or those living in areas of deprivation.

“I see patients where they don't speak English as their first language, and some patients haven't been able to speak English at all. We have built relationships with communities as we find it better to have someone from their own community that they trust to interpret for them and then we build trust with the patient.

“With someone who has limited English there can be mix of reaction when they first meet me as a Hospice nurse. I've had people communicating with me in other ways, like holding my hands and smiling and very happy for me to be there.

“I've had people who are a little bit more anxious and nervous because they don't understand everything I'm saying and everything is having to be translated. The main thing is the reassurance that we're not just going to take people away and put them in the Hospice and to explain most of the work we do at St Helena is at home.”

Myth – Hospice is just for people with cancer

Josh Wilkins, advanced nurse practitioner at the Hospice, said:

FALSE! At St Helena Hospice we care for everyone with a life limiting illness. It's not just cancer; last year alone [2021/22] 42% of the patients we cared for had a non cancer diagnosis such as heart failure, liver failure, motor neurone disease, respiratory diseases, dementia and renal failure.

“This is one of the reasons that I love working here at the Hospice because we are here for everyone who needs us. We have people of all ages because illness affects everyone, not just the old, and we're here for all people, no matter what the age.

“Being admitted to the Hospice does not mean you’re not going to leave. People are admitted for medical reasons and symptom control, not just for end of life care. Obviously, we do a lot of end of life care and we pride ourselves in that. However, a lot of the patients who are coming to us come in because they're symptomatic. We hope to try and get them feeling a bit better and then we get try to get them back home. 

Image: advanced nurse practitioner Josh Wilkins

Josh Wilkins, advanced nurse practitioner

“It's lovely when you see people go home it's brilliant because a lot of the time people will come into the Hospice, they're really unwell, very symptomatic, whether that’s pain, breathlessness, extra fluid in their system, nausea, whatever it might be, and then when we see people go home, it feels like a job well done.

"People do know that sometimes we can't fully cure all their symptoms; we try our best to get the symptoms to a manageable level that someone is happy with, and as long as the patients are happy, we're happy. 

“Some of what we do is medications for the different symptoms, but there's other things as well that play a part. Our psychosocial teams and family support teams are brilliant and they also work with children who have a parent or loved one with us. 

“Complementary therapy plays a big part and our physiotherapists and occupational therapists, the work they do getting people up and about is incredible, because sometimes the symptoms are there because of whatever the diagnosis is, but actually someone's inability to be able to look after themselves or mobilise easily just can exacerbate those symptoms. 

“So all the other teams we have at the Hospice and in our Hospice in the Home team, who don't focus on the medicinal side of things, can have a really good input and by improving those other things like mobility or someone's mind or a bit of relaxation, can all play a big part in managing symptoms. So it's not all just medicines.”

Myth - Bereavement support is only available for relatives of hospice patients

Kaye Riley, bereavement counsellor, said:

FALSE! We take bereavement referrals for anybody. We have both a children’s service and a service for adults. 

“We give bereavement support to people for a whole range of reasons including Covid deaths, accidents, suicide, baby loss, miscarriage, as well as life limiting illness.

“The first time meeting a counsellor, people probably are quite nervous, they’re not sure what it's all about, how the process works. So sometimes it's about reassuring people that what they're feeling is quite normal and we have a little bit of a chat about the grief process because people just don't know what to expect.

“Initially people may feel very numb and in denial about what's happened and it takes a while for the shock to come off and then it may go into anger. There are several different processes but in grief we don't go from one to the other. It's not linear; it can go backwards and forwards. 

Image: bereavement counsellor Kaye Riley

Kaye Riley, bereavement counsellor

“Mainly what you're trying to do over a very long period of time, is to come to some sort of acceptance and adjustment to the new life that you're having. It's a different life and it's about building your life around that grief. I don't think the grief ever really goes away, but you're building a new life around it. This may take years, it's a huge process for someone to go through.

“I love seeing that movement when sometimes people come in very distressed and seeing some sort of shift in that. We don’t always see the end result because it depends on where they come to see us in their journey but seeing a shift that they are going to be alright and they know they're going to be alright, even though the road ahead still might be quite rocky.”

Myth - Hospice care is just clinical support

Jenni Homewood, complementary therapy team lead, said:

FALSE! When most people have a terminal illness, they do enter a very clinical world, but hospice care brings complementary therapies alongside that which focuses on the whole person. We're looking at their physical symptoms, we're considering their emotional well-being, some of the things whirling around in their mind. 

“By focusing on that individual and listening to what they want and what they need because of the stress of the illness, we're able to bring in the level of calm. We're able to sometimes deal with some of the pain issues through massage over some of the areas, and we give them some time just for themselves outside of that clinical world.

“What we see when people have these therapies and these treatments, is a real visible improvement in their whole demeanour, how they walk out of the room, how they come back a few weeks later and say that made a difference.

“One of the things we always say to those who are having our therapies is that what we offer are safe treatments and they're permissible for them to have during their treatment even though it's not a clinical, what we call non pharmacological intervention. 

Image: Jenni Homewood

Jenni Homewood, complementary therapy team lead

"It's backed by research and it's approved by the Hospice and it empowers that individual, it validates them and what they're going through, and makes their journey through this very challenging time a lot better, a lot more comforting.

“Touch is crucial because often when people are diagnosed with something that's incurable or they have a cancer, they suddenly become untouchable to many around them.

“What we find is touch is so relevant to come to our restoration and, as an individual, our bodies and our skins crave touch, but we do this in a very appropriate manner, we do it in a very gentle manner and we do it by focusing on that individual and what they need. By bringing in this element of touch, which is so crucial it really does something special to that person, they suddenly realise that they're not untouchable, that they're still the individual they were before they had that illness and we’re able to bring that comfort back to them.”

Myth – Hospice support is only available 9-5

Richard Welby, SinglePoint clinical nurse specialist, said:

"FALSE! SinglePoint is a 24/7 service and we're here to support not only the patient but their families too. We're very much a receptive service. We like to be as proactive as possible and available as possible, so please don't believe the myth that we're only available 9 to 5 because that's not the case, and that also includes weekends and bank holidays; it's a 365 day and night service.

"When you phone SinglePoint, we should have your records up, particularly if you’re on the My Care Choices Register (MCCR). Even if you're not on the register yet, we can still help and we can advise and support as required.

"If we’re busy with another call, particularly at night, and you have to leave a message, we will get back to you as soon as possible. We won't need to go through lots of other triage systems that you might come across when you ring, for example, 111; we try and be as receptive as possible.

"You don’t necessarily have to be known to the Hospice to call. Obviously we might have more limited information if you're not known to the Hospice or not on MCCR but we will endeavour to help as much as we possibly can.

Image: SinglePoint nurse Richard Welby

Richard Welby, SinglePoint clinical nurse specialist

"As clinical nurse specialists in SinglePoint, as it's a 24/7 service we work in a more rapid response way than our Hospice in the Home clinical nurse specialist colleagues who have their caseloads. We don't tend to have caseloads, we tend to go and see patients as and when they require urgent visits.

"When we arrive at someone’s door when they are in crisis, they're usually very, very grateful to see us. Sometimes these visits can be very difficult situations not only for patients but for families, but the patient and family is very pleased to see us."

Myth - Hospices are sad

Claire Burton, deputy sister, said:

"FALSE! The Hospice isn't a sad place at all. It's a light and airy place. We laugh together, we cry together as nurses, clinical support workers and all the other people involved in hospice care, we are all here because we want to be here, it's a beautiful place to be.

'I wanted to be a nurse from a really young age, and I couldn't imagine doing any other job. I absolutely love being a nurse, making a difference in people's lives. It 100% fulfils my life coming to work; it's like a second family. We all work with the same aim and that’s for our patients. I give my heart and soul to all my patients like I would my own family."

"End of life and palliative care is such a big passion of mine, making a difference in people's lives, giving patients' choice of how they want to be cared for, where they want to be cared for and where they want to die. When patients and their families are in crisis, they sometimes need a sense of control,  at the hospice we can support, guide, and emphasise, ensuring patients' needs are at the forefront of their care. This gives me so much job satisfaction which makes nursing all worthwhile.

Image: deputy sister Claire Burton

Claire Burton, deputy sister

People in need of any St Helena Hospice service can refer themselves for support, or their GP, health professional, carer or family member can refer them with their consent, by completing the form online or calling SinglePoint on 01206 890 360.


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