As St Nicholas Hospice Care celebrates its 30th anniversary in 2014 it has pledged to support even more people in the local community that it serves. Part of the motivation for this pledge is an acknowledgement that the need for end of life care is increasing and more people want to be cared for in their own homes and communities. To do this, we have developed a plan which is underpinned by a philosophy of mutuality. By this, we mean that we will work alongside people, rather than ‘doing things unto’ them.
Some of the developments we have made have evolved without formal planning, which is wonderful. Others have come from suggestions made by service users. We are fortunate to have a number of people who, from starting as service users, have become clinical volunteers and advisors to service development.
Roy’s journey
Roy used the hospice’s outpatient services whilst experiencing symptoms from his progressive disease. He was also receiving intense treatment for his illness. During this time he found real safety by being in the hospice environment even after his programme of care had finished. He would continue to drop in to the hospice’s main building and see the staff. Over time, he became well in himself and also became more interested in the way the hospice works.
As a result, he was asked if he would like to become a member of the User Advisory Group. This group advises on the direction of the hospice and plays an important role in making sure that service users are at the heart of any changes or developments that are made. Roy began to play a different but vital role in the hospice.
Whilst in day care he rekindled his passion for art. He went on to sell his artwork to raise funds for the hospice and even held an art exhibition in the main hospice building. Roy’s journey took him from person to patient to advisor to volunteer and finally to become an inspiration to others – staff, volunteers and service users alike. He became a person again, not a patient.
“Everywhere I go I feel inspired to do what I do; I have been given so much and I want to give in return. I am so chuffed to be able to be what I am to the hospice. I can’t think like that as a patient but I can as a person,” said Roy.
‘I see myself as a person again’
Pat, who is significantly disabled by MS, used the hospice’s day care services. Following her time as an outpatient, she also became a User Advisory Group member. She played a vital role in designing the annual patient and family satisfaction survey, ensuring the hospice could understand and respond better to feedback from people receiving care.
More recently, she undertook a training course in basic counselling skills and now supports the hospice’s family support service. She supports people who are inpatients on the ward and who are approaching the end of life.
“I can only say that my experience [at the hospice] has enabled me to see myself as a person rather than a ‘person with an illness’. This in turn has motivated me to use my experience to help others by becoming involved in volunteer work which gives me great satisfaction and has boosted my self-esteem greatly,” Pat commented.
A third person, Audrey, a regular member of our writing group has since gone on to start up a satellite writing group in her own market town. Her approach embodies our philosophy of helping community members support their neighbours. Audrey knows from personal experience the value of an informal writing group helping people with their grief and worries.
Hospice Neighbours
A service that truly epitomises the hospice’s ethos of humanity, compassion and community empowerment is its flagship volunteering scheme: Hospice Neighbours.
St Nicholas Hospice Care’s Hospice Neighbours service has more than 120 volunteers providing companionship and practical support to someone in their local community.
A recent in-depth evaluation of a number of patients revealed the great value they placed on the personal relationships that had grown between them and their Hospice Neighbour. They spoke in moving terms of the way in which these relationships were felt to be a ‘lifeline’ and a trusted ‘safe haven’ in uncertain, sometimes fearful times.
One thing that stood out from the results was that the word ‘friendship’ was used by every respondent – a concept often avoided in the professional world. Through the development of deep friendships Hospice Neighbours have the unique position of continuing to see the family as they experience grief. They are often the most consistent person in a process that involves many different professionals from a range of organisations.
A new model of mutuality
As we have developed the way we deliver our services at St Nicholas Hospice Care, we have learnt to question the artificial boundaries between ‘us and them.’ We have learnt to question the labels that can be so tempting to give people in order to make them ‘fit’ with an organisational structure of service delivery.
Hospices need to take risks to liberate the skills of groups and individuals in order to better serve their communities. We believe that the future of hospice care must encompass a new model of mutuality.
There is a great deal of work to be done by hospice leaders to change the dynamics of power between patients, families and professionals. We recognise that we are still on that journey ourselves, but the great strides forward that we have already made come largely from the courage to break down traditional professional boundaries. This has resulted in patients joining our professional teams and volunteers becoming ‘lifelines’ for people. More work is required to determine how we can continue to integrate the power of ‘friendship’ into our services. Ground-breaking, yet so old-fashioned.
Pat Francis, Audrey McDermott & Roy Salt have chosen that their real names are used in this article; they are co-collaborators and are by no means anonymous!
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