The angels that watch over us: Value of Northern Ireland hospice care
As the Northern Ireland Hospice remembers founder Dame Cicely Saunders in its prayers on the 10th anniversary of her death tomorrow, a local nurse who has worked for the service from the start tells Stephanie Bell of the legacy left by the famous pioneer of palliative medicine.
Bangor woman Janet McVeigh was one of the first community nurses to join the Northern Ireland Hospice when it launched here 23 years ago - a time before palliative care became a specialist area of medicine.
With the hospice in its infancy, she and her nursing colleagues were also pioneers as they went out into the homes of terminally ill people to care for them and their families.
Today it would be unthinkable not to have the service which started in England in 1967 when Dame Cicely Saunders, a nurse who later became a doctor, recognised the inadequacy of the care offered to patients.
At that time, patients and families were often told that there was nothing more that could be done - a statement that Dame Cicely refused to accept.
She set up St Christopher's Hospice in Bromley where her slogan became "there is so much more to be done".
This ethos remains at the very heart of the hospice today and has been one of the most difficult messages to get across to the public, who too often regard it as a place to die and its nurses as something akin to angels of death.
But there is so much more to the service which nurses and staff like 55-year-old Janet provide and even today - over 30 years later - that old attitude can still persist as Janet reveals.
"When I first trained as a nurse at 18 I had never heard of palliative care," she says.
"It was something that was not really discussed in hospitals and people just died.
"In the early days of the hospice, people regarded it as a place they go to die and many still do but most of our work is about symptom management, in fact 50% of patients are discharged after being admitted to the hospice.
"Many people come to the hospice to get their symptoms under control so that they can go home feeling better than they were when they came in.
"Life is for the living and we want symptoms to be reduced so that instead of focusing on their symptoms, patients can focus on living and quality of life.
"I think in those early days before palliative care evolved and became a specialist area of medicine, we were regarded largely by the public as nurses of death - if you needed us then that was it, life was over.
"Thankfully now we are seen as less of a threat and more people do accept that a big part of our role is pain management.
"Older people do still associate hospices with dying but I think we are getting away from that although it still is a bit of a struggle. Hospice isn't a sad place, there is a lot of laughter there and a lot of good times and quality of life."
The original principles of Dame Cicely, who understood that a dying person is more than a patient, is also a unique part of the hospice approach to patient care.
She became convinced of the paramount importance of combining excellent medical and nursing care with "holistic" support that recognised practical, emotional, social, and spiritual need.
She saw the dying person and the family as the unit of care and developed bereavement services at St Christopher's Hospice to extend support beyond the death of the patient.
This is work which Janet and her team carry out on a daily basis, supporting families and loved ones as much as the patients themselves. Janet is part of a community nursing team in Bangor.
When she started in 1983 there were just three community teams offering support - today there are seven covering most of Northern Ireland.
The hospice nurses are very much part of a care team working alongside local GPs and district nurses.
It is a job which inevitably can take its toll emotionally but nurses and staff support each other as they face the sad loss of their patients.
"The thing is you meet some of the nicest people in very, very difficult circumstances," says Janet.
"People do constantly ask me 'how do you do that job?' and say it is something they could never do but you get a lot of satisfaction from it too.
"If you are able to get someone's symptoms under control so that they are feeling a lot better and can go and do something they have always wanted to do and you have helped enable them to do it, then that is rewarding.
"We also support families in coming to terms with what is happening. We are there to support them when they are doing what is the most difficult job in the world - caring for someone they love who is dying.
"Sometimes we are dealing with hurt and pain that there isn't a drug for."
And she added: "When you see people dying and leaving their family and they have not been able to have the life they had planned, that's the type of pain you can't take away.
"It can take its toll on you. I have a wonderful husband and I try to keep work to work and home to home and maintain that separation.
"You have to look after yourself and know you can only do your best.
"But even though you do know you have done all you can sometimes you can't help feeling there is something else you maybe could have done.
"It is sad and we don't have a magic wand unfortunately as I would love one.
"It is hard too whenever a patient is your age or younger and the older you get the more it happens and that is tough."
Janet is married to Tom (56) an engineer manager and has a 14-year-old stepdaughter.
She trained as a nurse at the age of 18 in the Ulster Hospital in Dundonald and has been nursing for 36 years.
While she plans a well-earned retirement at the end of this month, she feels she cannot let go completely and hopes to continue to help out in her Bangor-based community role part-time.
She is a keen crafter and it is this hobby which she says has helped her cope with the difficult emotional side of her job.
"My parents are still alive and I want to spend more time with them when I retire," she says.
"Mum has already picked a day for us to go out once a week and then I will work a couple of days and do my crafting after that. I like card-making, knitting, scrapbooks and paper crafts.
"It always took me away from thinking about work.
"I am also hoping to get to the gym and I have promised Tom that once one of us retires we will get a dog.
"I'm retiring at a great time for the hospice as the new building opens later this year.
"We still have £1.6m of the £13m needed to complete it and it is going to be fantastic.
"It will be so patient-friendly and have the resources to allow staff to provide the highest care."
Demand for services increasing
- The very first hospice nurse started work in 1983, providing care to patients in their own homes. In 1985, Somerton House opened with a six-bed unit before a further 11 were added in the years that followed
- In 2001, Northern Ireland Children's Hospice opened Horizon House. The purpose-built facility consists of 10 bedrooms, a hydrotherapy pool, a multi-sensory room, play den, large living area and family accommodation. Sitting at the foot of the Cavehill in Newtownabbey, Horizon House is a 'home from home' for families who use the service
- In 2012, Horizon West was opened in Killadeas, Co Fermanagh. The purpose-built facility consists of four bedrooms, an art room, a den, a multi-sensory hydrotherapy bathroom and family accommodation
- Northern Ireland Hospice cares for 3,000 adults with life-limiting illnesses and their families each year. Demand for hospice services is increasing and the charity is now caring for more than 90% of patients in their own homes. While hospice care is free to the patient, it is not free to provide and the charity relies heavily on support and donations from the public
- Following years of detailed planning, NI Hospice is building a new adult hospice that meets the end-of-life care needs of the next generation
- Construction work is now well under way on a purpose-built facility at Somerton Road, north Belfast. The state-of-the-art hospice has been designed to care for people with complex needs and the growing numbers of people in need of end-of-life care
- The new hospice will be dementia-friendly - the first of its kind in Northern Ireland
- Expected to open in late 2015, it will include an Education and Research Centre, putting Northern Ireland at the forefront of palliative care and research
- The hospice still needs £1.6m to complete the project and is appealing to all sources of funding to help close this gap
- Gifts in wills are a crucial source of income for the hospice. In fact, last year one in five patients were cared for as a direct result of these selfless gifts
- Twenty years ago, Northern Ireland Hospice cared for 98 patients. Today it cares for more than 3,000 patients. A gift in your will, no matter how large or small, can make a real difference to the lives of hospice patients, both now and in the future
- For further information, contact NI Hospice legacy officer Sharon Gorman on 028 9078 1836 or firstname.lastname@example.org