When I was growing up, there was huge fear, fear of 'The Big C'. Cancer would drive my mother to bless herself. She couldn't say the word.”
Cynthia Clampett clearly does not subscribe to her mother's 'speak of the devil and he shall appear' approach.
For Cynthia, as CEO of Mayo Roscommon Hospice Foundation, cancer is dealt with and talked about daily, hourly even.
But she is not on the fighting side of the battle against the disease. Instead, she is at the other end of the spectrum of the many services provided around cancer.
Her life's work is to develop a top class service in Mayo and Roscommon working with people for whom recovery is no longer the expectation, who need support to journey the road to the end of life in comfort and dignity.
It may seem like an overwhelmingly bleak business to be in - acceptance instead of the fight for survival. And for Cynthia, it was a little difficult to grasp when she started working with the hospice foundation 19 years ago.
“I suppose I was a little naïve,” she remembers. “I had to learn that in the work we do, we can't fix things. We're not here to fix things. Death is normal. It is a part of life and we have to accept that and the hospice palliative care nurses can only try to walk that mile with people and be very respectful of that journey.”
To that end, Mayo Roscommon Hospice each year addresses the physical and emotional needs, through a team of specialist palliative care nurses, social workers, and therapists, of some 800 patients and their families across the two counties who are living with life-limiting conditions, such as cancer, COPD, heart failure, end-stage dementia, and motor neurone disease.
The foundation was founded by patron Dr Burt Farrell and a small group of like-minded people in 1992. Based in Westport, Dr Farrell was seeing many of his patients coming to the end of their lives, who were discharged from hospital and sent home to die, often in great pain, with little or no supports to help them and their families through not only the physical process but the mental trauma too.
Pledged
Dr Farrell and the founder members sought to change the helplessness of the situation, and to that end he travelled to England and Wales to see firsthand the work of the Macmillan cancer support nurses.
“That's what our services are modelled on,” explains Cynthia. “The Macmillan nurses were working in a similar terrain, across a broad spread of land with a dispersed population, and they were going out into the community, into peoples' homes and providing palliative care services.”
With the support of the Lions Clubs in Ballina, Westport, Castlebar and Roscommon, who pledged 100,000 pounds, at that time a huge sum of money, the foundation was established.
Cynthia started out as a volunteer with the Roscommon Town Hospice Support Group in 1994 and was appointed as adminstrator and fundraiser in 1998.
At that time, the service consisted of a medical director, and six specialist nurses, two in Roscommon and four in Mayo. Today, the service has grown to include 15 specialist palliative care nurses working in the home care teams serving Mayo and Roscommon, three social workers, a family therapist, hospice care workers, medical secretaries, extra night nursing hours and in-hospital palliative care nurses.
“It’s a holistic service,” explains Cynthia. “We have highly specialised nurses who can manage patients’ pain and keep symptoms under control, but there is also emotional pain, worry about what people are leaving behind, the impact on their loved ones. The team has to be skilled enough to deal with the whole picture.”
Controversies
Now, the Mayo Roscommon Hospice Foundation has set itself a mammoth challenge - the construction of two specialised in-patient palliative care units - one in Roscommon and one in Mayo.
It has been a long road to get to the stage where the building phase on the project is almost within sight.
After years of fundraising, legal and contractual wrangling, disappointments (thanks to the economic meltdown ), and meetings with successive health ministers, a14-bed specialised unit in Mayo is set to go ahead at a site in Knockaphunta, costing some €8.5 million to construct.
A second eight-bed unit will be built on the grounds of Roscommon Hospital.
One hundred per cent of the cost of building both units will be funded by Mayo Roscommon Hospice and the Government has committed to staffing and funding the units once the buildings are in place.
“We’ve been very effective fundraisers over the years,” says Cynthia. “Every year we’ve raised what we required to fund the service (€1.3 million annually ) and we’ve also been building up our reserve fund for the development of our hospice units. We are half way there and once we get the go ahead, we will launch a number of fundraising projects, such as a ‘Buy a Brick’ campaign and a ‘Help Us Build Our Hospice’ draw.
However the recent controversies at some national charities surrounding salaries, bonuses, and top-ups have done “untold damage” to services like Mayo Roscommon Hospice Foundation, which are so dependent on the generosity, goodwill and, above all, trust of the public.
“It’s not measurable yet but it has been hugely damaging,” outlines Cynthia. “I don’t know if it will ever be fully repaired. People are left wondering now where their money is going. And I totally understand why people are annoyed and angry at these revelations. All I can say is please, please, please remember why charities came into being in the first place.”
Human cost
“A small group of community spirited people set up this service because it was so badly needed. It has supported 10,000 patients and their families since then. The experience of those people and their families would have been very different if our founder members hadn’t of had that foresight to establish the foundation.”
Government funding for palliative care services in the west of ireland is “grossly inadequate” and the hospice service would not exist without donations from the public.
“We owe a huge debt of gratitude to our wonderful hospice supporters and volunteers who help raise funds for the service. Without their loyal support we could not provide the excellent service that is in place today.”
And the value of the work of the foundation goes far beyond providing the supports needed for someone to be able to die with dignity, in peace and in comfort.
“If a death is dealt with well there is actually huge savings to the economy,” explains Cynthia. “If a person has a ‘good death’, the people who are left behind are much better equipped to deal with that loss, there’s less time off work, less psychological damage, less use of sleeping tablets, anti-depressants, fewer visist to GPs. There is a huge human cost that is lessened by having this service in place. You couldn’t begin to quantify it.”
With so many individuals now touched by cancer, either directly or through a loved one, at some stage in their lives, Cynthia says hospice tends to resonate strongly with people in Mayo and Roscommon, and the public have always been hugely responsive and generous. She is hoping that will continue despite the charities scandals.
If you would like to get involved with hospice, make a donation, or find out more, visit www.hospice.ie or telephone (094 ) 9388666.
