Skanda Vale Hospice is a fully equipped and beautifully furnished six bed centre, set in well kept, landscaped grounds in rural Ceredigion. It is a haven for people with life limiting illnesses and, it seems, for those who work as staff or who volunteer to make it a special place of hospitality and ‘total care’.
Founded in 1993 by monks and nuns from Skanda Vale multi faith monastery, the hospice has just five staff members, all registered nurses, who lead the clinical care. The team is made up almost entirely of volunteers who oversee the domestic arrangements, the garden, social activities, complementary therapies and who also support the nursing staff in providing clinical health care. Bank nurses are also employed on a shift basis.
How it began
Skanda Vale’s founder, Guru Sri Subramanium became acutely aware of the loneliness and fear of some fellow patients, when he was himself recovering from a serious heart attack in hospital in 1987. Although medical needs were attended to, an elderly patient in the next bed died alone without the companionship, reassurance and love that he really needed. Hospital staff were simply too busy to spend time in meeting the patients psychological, social and emotional needs.
This experience became the inspiration for Skanda Vale Hospice, which provides day care and respite care for patients across three counties.
How do volunteers help?
A fundamental part of the ethos of care at Skanda is to treat people and their families in a holistic manner, taking care of not only physical but also social, emotional and spiritual needs as well. Patients are aged 30 to 80 and have a range of life limiting conditions including cancer, muscular dystrophy, motor neurone disease and dementia. Not everyone who comes is in the late stages of their illness, but all are having to learn to live with their condition.
Cath Thompson, Clinical Lead, explained ‘Just giving time, space, a listening ear and a good night’s sleep can make a vast difference in such a simple way’.
Having time to listen and understand the issues faced by patients gives rise to opportunities for advocacy , representing patients’ needs to those who can best help ‘We can be their voice with professionals’ said Jane Coles, a registered nurse who coordinates clinical support volunteers. ‘The social isolation experienced by some patients is horrific’. The hospice has regular links with local GPS and the specialist palliative care team as well as other agencies.
About 50 volunteers contribute between them more than 3,100 hours each month. Volunteers from the multifaith community take responsibilities for coordinating transport, housekeeping, catering, fundraising, arts and crafts and therapies and the management of the centre. Volunteers from the local population get involved as volunteer companions, giving time to talk with patients, assist at mealtimes, play games and share laughter. Others are recruited and trained as clinical health care support workers and assist with bathing, feeding and personal care.
‘There are clear roles and responsibilities, but no hierarchy here’ said Jane.
Making a difference – to patients and their families
Jane described one patient who comes for day care ‘She looked like a rabbit in headlights when she first came. She said ‘hospice – I’m not ready for that yet’. And her words to me last week were ‘this is exactly what I needed. I cannot put into words the difference that coming here has made to my life’.
Another patient described their experience ‘I lost interest in life. And recovery didn’t really bother me, because living had lost it’s edge… I was in so much pain and discomfort that I couldn’t see past it. And then I came here, for my first week… I remember thinking to myself ‘How come I had to get so ill to meet such nice people, such honest people?
‘Care, love – the lot of it. Everything is here. It’s wonderful. I have tried to explain to so many people what this feeling is like here. And I can’t. There aren’t words to describe it… This place has given me a new meaning. I’ve been told I’m going to die and this place has made me joyous about… well not about it, but it’s put some joy in my step.’
Volunteers can offer a quality of care that comes from having time and a willingness to share their human experience. ‘Volunteers who come from the [multifaith] community bring a different dimension to the care and support of the families’ said Cath Thompson. ‘The skills and experience that volunteers bring, both life experience, experience of caring for family members and sometimes professional experience, including in paediatrics, nursing and general practice, can sometimes unlock potential in patients. Volunteers are a great asset in that respect’.
A patient said ‘This place is full of people that care…they are volunteers most of them. [Many of] these are people that are qualified. They could charge money, but they volunteer and help. It’s mind blowing.’
The support given to patients’ families is also appreciated. A carer said ‘The only time I can switch off is when [the patient] is here. I don’t have to worry about her. I know she is happy and contented. That means a lot to me”.
Jane gave an example ‘I’ve had a husband and wife whisper to me different things; they are both on the same wavelength but they are frightened to tell each other. What a privilege is that to see our team opening up channels of communication again. It’s just amazing’.
Making a difference – to volunteers themselves
Volunteers have expressed the satisfaction of knowing they are doing something worthwhile ‘Its really helping people to live, however long they’ve got’ .
Sophie came to volunteer following the death of her grandmother, for whom she had been a carer for 10 years ‘After her death I felt a great sense of loss and emptiness, I had to move out of her home, where I had lived full time for 3 years, and back to living on my own’.
Volunteering at Skanda Vale has helped Sophie to overcome her grief related depression, and to regain a sense of purpose. A professional team around her enabled her to develop confidence in using the skills she had already acquired in caring for her grandmother and accredited training which opened doors to future employment.
‘My time here has benefitted me in ways that I could not envisage’ said Sophie. ‘it has given me restored confidence that I can share my skills and experience as well as the human companionship and support that has helped me with the grieving process.
‘There are many opportunities for professional development with the inhouse training on offer. I now wish to continue with developing in this field of palliative care. It is an essential service, offering people reassurance of the goodness of humanity at a time when it is most needed’
Free accommodation is offered to volunteers; without this it would not have been possible for Sophie, who lives more than two hours away.
A thorough induction programme helps to prepare volunteers for their role and also to value their contribution ‘They like it. They feel valued’ said Jane. It is also important to have the ‘right people’, Jane explained, ‘and not to put off having difficult conversations with volunteers when necessary’.
The way in which staff, volunteers and patients interact together and the sharing of experiences – both profound and trivial – models how communities can be self supporting, mutually enriching and life-enhancing. Monthly development days for the whole team enable the continual development of skills and personal attributes that provide the environment in which this can effectively happen.
Developments for the future
The hospice has slowly expanded its service, from being open for a five day period to a full seven day period each month for respite care. There are plans to extend this further to allow respite stays of up to 12 days in 2020 and to enlarge the volunteer team in order to enable this.
Skanda Vale aims also to open on more days each week for day care and to develop opportunities for nurses to undertake placements at the hospice, as a part of their training.
All this will continue to depend upon the time and commitment of volunteers ‘I am just amazed at the hours the volunteers give’ said Jane. ‘Some of these shifts can be tough and some these patients are quite dependent. But they come back time and again. I think that’s lovely’.
Volunteering at Skanda Vale is supported by a WCVA Volunteering Wales grant.