St Helena is joining forces with other hospices across the UK to support national hospice and palliative care charity, Hospice UK, in its Open Up Hospice Care campaign.
The campaign, which runs throughout March, is aimed at widening access to the vital support hospices provide for people with incurable conditions and those who care for them.
Hospice UK published the findings of a new survey by ComRes this week, which found that seven in ten UK adults (72 per cent) say that support from a local hospice would make them feel more confident in supporting a loved one with a terminal condition at home.
In the first of four stories this month highlighting some of the ways hospice care is available, St Helena looks at how most of the care it provides across Colchester and Tendring is not inside a hospice building, but at home.
Yem Nair was worried when her mum, Vijay Pillai, chose to be cared for by St Helena’s Hospice in the Home team after the ovarian cancer which she had chemotherapy for, aggressively returned. Yem soon realised her mum’s choice to stay at home was right for their family. She said:
“When mum started staying with me, that’s when the intensity of the whole thing hit me.
“She said to me ‘I’m dying, aren’t I’? And that broke my heart. All I could say was ‘we’re going to face it together’.
“The GP talked about end of life care. That was a really difficult day. When the doctor asked mum, and it was all for mum to answer, what sort of care she would like, mum said ‘I don’t want to leave my daughter, I want to be with her.’ The doctor told her she didn’t have to, she had choices. And then he mentioned about Hospice in the Home, and he explained what it entails and what support St Helena could provide.
“It was news to me and I was very nervous. He reassured me we needn’t worry about anything, everything would be taken care of. I walked away thinking there was something mum was in control of; she wanted to stay at home, so she will be at home.”
It was important to Yem that her mum made her own decisions about her care and have difficult conversations about the future such as choices about resuscitation. St Helena hosts the My Care Choices Register, a secure database for people in North Essex who are living with incurable illness, dementia or frailty to record their decisions about how they wish their care to be in the future and where they want to be, which can be accessed by a health professional in a time of crisis.
Once the decision to be supported at home had been made, one of St Helena’s Community Clinical Nurse Specialists (CNS) visited the family’s home and established a relationship with Vijay and her loved ones. As Vijay started deteriorating at the beginning of February 2017, the CNS visits started to become more frequent which made her feel more comfortable and reassured.
A CNS visits someone at home who has an incurable and progressive illness. That person may be suffering complex symptoms or need emotional support to help them cope better with their thoughts and feelings about their situation and their future. The nurse will make the person feel as comfortable as possible at home, improving the quality of their life by looking at managing symptoms; suggesting any St Helena Day Therapies groups which may give them a focus; giving financial and practical advice; supporting their loved ones; anything that’s going to help improve a difficult time.
Becky Evans, Community Clinical Nurse Specialist, (pictured right) explains:
“If people choose to die at home there are lots of things we can do to support them. We are the first point of call for family and friends because sometimes there can be lots of people involved, and they’re not really sure who to go to first.
“A lot of people hear ‘hospice’ and think that’s it, that’s the end. So a lot of our focus is around reassurance, symptom management and supporting the family.”
The CNS team works closely with GPs and district nurses as well as the physiotherapy, occupational therapy and rehabilitation teams at St Helena, to make sure the person they are supporting has the best quality of life.
St Helena’s community Occupational Therapy team visited the Nair family to assess what changes would be needed at home to help Vijay remain comfortable and which would make it easier for Yem to care for her mum.
Maggie Humphries, Community Occupational Therapist at St Helena, explains:
“We aim to help patients lead a full and meaningful life even in the face of adversity. We look holistically at the whole person and help prioritise what’s important to them. Whether it’s to continue having a bath safely and independently or whether it’s being able to pop out to their greenhouse to grow their veg. We listen to what a person wants to be able to achieve and look creatively at ways to support them to do it.”
Her colleague Bridget Russell adds:
“For people where things have moved on a bit and they haven’t got as much energy and they’re spending a lot of time in bed, we look at positioning, or if they are struggling to get out of bed, we look at the bed; where it is, whether it is about getting from lying to sitting or getting to the edge of the bed. We look at where the difficulties are and then the different techniques or different bits of equipment to help with that.”
Both the physical and emotional side of caring for a loved one at home can be difficult and Yem found the rounded support of hospice care at home helped when she needed it most. She said:
“My daughter had an emotional time and struggled with mum’s final few days. It was getting quite difficult. I remember talking to one of St Helena’s counsellors and she said we can provide support for your daughter as well. It’s all these little things.
“The Saturday before mum died, one of the nurses came and said to me ‘just talk’. And I had a complete breakdown.
She said ‘that’s fine, I just want you to talk because that is also important; when you are caring for your mum, you are expected to be strong, but sometimes you just can’t’. It’s those kinds of things that make a difference. Any other situation and you get the support from your family and friends but to get that from the nurses you can kind of see it from both perspectives; from a medical perspective of support, but also the emotional side.”
As a CNS, Becky agrees giving people an opportunity to talk is an important part of the support she can offer. She explained:
“I feel people are desperate for support. Very much on the first visit I get the sense of people thinking, thank goodness you’re here. They’re just lost. They may have had devastating news that the disease is incurable and they’re just drowning, overwhelmed. They just want someone to come along, reassure them. I can’t change what’s going to happen, but hopefully I can reassure them that we will help manage their symptoms to the best of our ability, that there are services available to support them if they want to stay at home, that there is support there for their families.”
For the Nair family, the experience of Hospice in the Home made a sad time more bearable knowing that their loved one was supported at home, were she wanted to be. Yem said:
“For me, I think there is a stigma about a hospice – ‘it’s the place you go to die’. But what I experienced with my mum was completely different.
“It’s that all round support and care which is why it means a lot to me to support St Helena. I want people to realise it’s the support they give in dealing with that emotional pain. Two years on and I have the comfort of knowing mum died in the family home surrounded by her family, and that means a lot to me.”
For more information about the My Care Choices Register, talk to your GP or visit mycarechoices.online
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The Hospice, Myland Hall, Barncroft Close, Highwoods, Colchester, C04 9JU
Telephone: 01206 845 566
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Telephone: 01206 845 566
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Telephone: 01255 221 222
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