Sponsored by
Susie's legacy inspires
Susie Long touched the lives of those who met her during her short life. In the wake of her death, The Susie Long Hospice fund was established to set up a hospice in her memory so that people can be allowed to die with dignity and comfort. Mary Cody speaks to those involved in the charity about how their plans for the future, the overwhelming support that they have received and the fiercely brave woman who inspired this growing movement
DEATH is the one certainty that we all face and have no control over. However, it is a subject that is rarely broached in an open and honest way.
Kilkenny woman, Susie Long, made people literally stand up and listen in the months leading up to her untimely death when she told the nation about her personal tragedy and how she was cheated out of her life because of a health system that failed her.
Susie spent seven months on a waiting list for a colonoscopy to diagnose her symptoms. By the time she was diagnosed with bowel cancer, it was too late. In a brave move, the articulate mother of two chose to go public with her story and expose the two-tier health system, in the hope that it might bring about change and save someone else from suffering the same, avoidable fate.
"Towards the end of her life, Susie was told that she had very little time to live. She managed to get a bed at Our Lady's Hospice in Harold's Cross and ended up being there for ten weeks. The hospice care gave her the confidence to face her impending death in a comfortable and safe environment that is dedicated to people that are facing the end of their lives. Hospice care gives people and their families the support, privacy and peace that they need at the end of their lives," Maeve Butler of the SLHF told the Kilkenny People.
Susie's husband Conor explained the importance of hospice care both for the patient and their loved ones. "Susie was due to leave Waterford Regional Hospital after an operation and was meant to go to St Luke's Hospital when she was told she had to go home as there was an outbreak of the vomiting bug. She went home and the HomeCare team were great but they couldn't provide the level of care that was needed and they could only come once a day. The method of giving Susie morphine was changed from infusions to tablets and she started getting withdrawal symptoms.
During this time Susie was suicidal at stages and I knew that even though her condition was terminal she had to make some sort of recovery from the operation so that she would have a better quality of life. The HomeCare team suggested two weeks of respite care in the hospice in Harold's Cross and Susie went.
"The difference in Susie when she went into the hospice was immediate. I knew straight away that her condition had im-proved. Susie was a very social person and the rooms were bright and airy and she had constant monitoring. The change in atmosphere lifted her spirits and she knew that she would be managed and that they would tackle the pain and they did. The hospice gave Susie the confidence that she could live as well as she possibly could and her mood was generally good during her time in the hospice.
"Hospices let people live as fully as they can. Hospice care made a huge difference to Susie and to her friends and family. Susie spoke to the consultants about how she might die and she was told that she would have an easy and painless death. The hospice allowed Susie to be herself and to say what had to be said. there were no regrets at the end about things being left unsaid. The hospice took a lot of the worry away and it felt like a weight had been lifted when we went there.I have a lot of happy memories of fun that we enjoyed during Susie's time there," said Conor.
In an interview recorded less than a month before her death Susie spoke bravely about the end of her life. "I am confident that I will have a comfortable death in the hospice here. They look after people very well. I am confident that I will be well looked after. That is why I am here," she said. Susie died at Our Lady's Hospice on October 12.
An organic movement that mushroomed
After Susie's death a group of her friends met in the Ormonde Hotel and from that night came the SLHF. "After Susie's death the idea was to do something in her memory and to raise money to raise awareness. Being in a hospice prolonged Susie's life and gave her extra time at the end and also provided great support for her family. The SLHF was set up to make some good happen out of tragic circumstances. The message we are sending out is that this hospice is a very poitive thing and that it is something that is for all of us. The need for hospice care will affect everyone at some stage during their lives," said Maeve Butler of SLHF. "A lot of it was to do with the fact that Susie was so outspoken and brave and well known. That and the obvious need for a hospice in Kilkenny are how the charity came about. It was very organic and the group grew as we educated ourselves. We all knew we wanted to do something because Susie was such an inspiration," said chairperson of SHLF Sonya Lanigan.
"The group has had a mushrooming effect. It started with donations but it has changed from the bulk being donations to the message getting out there and people taking the initiative to organise their own fundraising events for the fund," she added.
The committee itself speaks volumes about the woman who spoke up with clarity and purpose at a time of huge personal turmoil in the hope that by doing so she would create awareness and affect change change. It is a vibrant group of people and includes a solicitor, a doctor, local fundraisers, the Mayor, and a therapist to name but a few. The SHLF was set up in October 2007 to provide the highest possible quality of end-of-life care for patients and their families through the establishment of a 10-bed hospice in Kilkenny, for the people of Kilkenny and Carlow.
To date, the fundraising that has taken place at a local level has been incredible and there is f325,000 has been raised but the committee still have a long way to go to reach their target of f2 million by 2010.
"The first year was probably the toughest. We organised a Hospice Week last year and that was a breakthrough and as a result a lot of income was generated. We have sunk roots into the community now and there is a good understanding of what we are about."
"There are three elements to the group. One is fundraising and the others are to raise awareness and to work in conjunction with the Health Service Executive to ensure that the hospice becomes a reality. We are looking forward to meeting the new Palliative Care consultant who will be starting in Kilkenny in September, and the general manager of St Luke's Anne Slattery is very supportive.
The HSE have been great and we have a working group formed and there has been positive feedback from both sides, " added Ms Lanigan. "This month we are also going to visit some of the other hospices in Ireland - Blackrock Hospice in Dublin and the Galway Hospice - to learn more about best practice and to hear what advice the teams at these hospices can offer us, in terms of hospice design, based on their experience."
Members of St Luke's Hospital Management and Capital Project Team recently met with members of the SLHF to progress the provision of a hospice facility in the Kilkenny area.
The meeting was chaired by Ms Anne Slattery and attendees included member of the Hospital Project Team, Technical Services and Palliative Care Services for the Southeast while the SLHF representatives included Susie Long's husband, Conor Mac Liam, Chairperson of the Susie Long Hospice Fund, Sonya Lanigan and committee members Laura Noonan, Maeve Butler, Dr Pat Crowley and Aifric Gray.
Since this meeting the SLHF committee has also met with Dr Garry Courtney, Clinical Director of St Luke's Hospital.
Anne Slattery highlighted the existing palliative care services available to the people of Carlow/ Kilkenny and that the management and staff at the hospital were anxious to support the future development of a hospice in Kilkenny, as set out in the Palliative Care Strategy. Among the items discussed were possible locations for the hospice unit in Kilkenny. It was agreed at the meeting that a formal working group, which will include members of the SlHF, would be set up to progress the brief for the design of the hospice in Kilkenny.
Following the meeting, Anne Slattery said that "the partnership between the hospital and the Susie Long Hospice Fund Committee will work with the project team and service providers in securing the development of a dedicated hospice/palliative care unit in Kilkenny".
Chairperson of the Susie Long Hospice Fund, Sonya Lanigan added: "We are very pleased to be putting a structure in place for working together with the team at St Luke's on the development of the hospice. Working in partnership with the HSE in this way will ensure that we realise our goal of building a dedicated, sustainable hospice facility for the people of Kilkenny and Carlow. We're also very pleased to have this opportunity to let the public know the progress we're making. The SLHF has tremendous support from so many groups and individuals in our community who are working tirelessly, organising and volunteering for fundraising events.
"It is very encouraging for all of us to see that this support is also clearly evident among the management and staff of St Luke's and the HSE South, and is reflected in their willingness to engage in this partnership process. We're very much looking forward to working together over the next number of years to create a hospice facility which is, at the end of the day, for all of us."
From Kilkenny to Mongolia
The response from the people of Kilkenny to the SLHF has been incredible to date and two Kilkenny men are currently embarking on ambitious fundraising projects to raise money. Ballyfoyle man Frank Manning, the 'Van Man', is undertaking one of the most novel fundraisers yet for the Susie Long Hospice Fund. Frank and his friend, Mayo man Martin Sweeney, are driving their nine-year old Ford Fiesta from Kilkenny to Mongolia as part of the Mongol Rally 2009. As part of their fundraising efforts, they are organising an Independence Day Mongol Rally Party at Willie Byrne's Pub on John Street, Kilkenny on July 4, with a table quiz at 8pm, followed by music from The Bar Flies outside in the marquee.
Frank and Martin came up with the idea while overseas on a previous trip. "I was just looking for a new challenge", says Frank, "and I also wanted to do something to help the Susie Long Hospice Fund, so we hit on the Mongol Rally".
The Mongol Rally is an annual event, organised by the League of Adventurists International Ltd. Each team pays an entry fee to take part, which covers the costs of running the event. The participants can then fundraise for a charity of their choice in the knowledge that every penny they raise will go directly to their nominated charity. "We pay the entry fee ourselves and there are some other costs, such as visas, fuel, camping equipment and food, which we'll take care of", explains Frank. "Every cent that we raise in the name of the Susie Long Hospice Fund will go directly to the Fund. People can donate to our campaign at the Mongol Rally Party at Billy Byrnes on July 4 or, if they can't come along on the night, they can donate directly to the Susie Long Hospice Fund bank account at AIB, High Street, Kilkenny: Account number 34627051. They should state clearly on the lodgement that the donation is for the Mongol Rally, so that we can track what's being raised by our event," said Frank.
Travelling overland to a European country would be a big enough challenge for most people, but getting to Mongolia is a huge undertaking. "We have done a lot of research and we know the route we're going to take, which will be from the UK through Europe as far as Prague, where there's a big get together of all the teams. Then we head on to Eastern Europe to Turkey, on to Iran, Turkmenistan, Uzbekistan, Kazakhstan, Russia and down into Mongolia. Our ultimate goal is the capital of Mongolia, Ulan Bator".
Frank estimates that the whole trip, in his nine-year old Ford Fiesta, will take about six weeks. "We should make it in that time. Although the closer we get to Ulan Bator, the worse the roads get. There's only 80km of tarmac in all of Mongolia, so there are very few real roads. We'll be crossing deserts and meeting all kinds of terrain. Luckily, we don't have to drive back and after the run we will travel to Beijing and fly back from there. The cars involved in the rally are all sold in Ulan Bator and the money raised goes to charity. In some cases, the cars are modified and turned into police cars or emergency vehicle.
"We're bringing a tent each, so we'll be camping every night, although previous participants have told us that many locals along the way have been very hospitable and kind and have actually brought teams into their homes for the night. If we face any problems with language barriers along the way we think we're drawing lots of pictures and becoming very expressive with our body language in order to make ourselves understood," explains Frank.
Dublin City Marathon
Meanwhile, John Eustace is looking for people to volunteer to run in the Dublin City Marathon on October 29. "We will provide SLHF tee shirts, free gym membership and personal training and will pay the marathon fee. There will also be transport to and from the marathon. We would be very grateful if people would take part, Susie's situation is happening every day in Ireland. Unfortunately, all of us will be touched, in some way, by the need for a hospice within our lifetimes," said John.
Anyone would would like to make a donation to the Susie Long Hospice Fund can do so by lodging to the fund at AIB, High St, Kilkenny, Account No: 3462705, Sort code: 93-31-98. The Susie Long Hospice Fund is a registered charity, number CHY17950. Further details from www. susielonghospice.com
Email to a friend
Print this page
Looking for...
Featured advertisers
Jobs
Search for a job
Weather for Kilkenny
Saturday 04 February 2012
Today
Heavy rain
Temperature: 3 C to 9 C
Wind Speed: 16 mph
Wind direction: South
Tomorrow
Light rain
Temperature: 6 C to 7 C
Wind Speed: 8 mph
Wind direction: South west
