CASE STUDY - MEDICALLY RELATED DONATIONS
CLIC SARGENT CANCER SUPPORT FOR THE YOUNG
Easing the impact of childhood cancer on families in Northern Ireland
In October 2012, The Sir Jules Thorn Charitable Trust awarded a grant to CLIC Sargent to help improve the experience of paediatric oncology treatment for families in Northern Ireland. This was to be achieved through the establishment of a dedicated Home from Home, adjacent to The Royal Belfast Hospital for Sick Children. This facility, the first of its kind in Northern Ireland, opened in December 2013 and is called Paul’s House (Belfast).
Every week, two children and young people in Northern Ireland are diagnosed with cancer. Treatment starts immediately, and, depending on the diagnosis, this is likely to commence with a three-month stay in hospital. This is usually followed by a further course of chemotherapy and/or radiotherapy, which is often given as outpatient treatment. A typical course of radiotherapy will require daily outpatient appointments, five days a week, for six weeks. Chemotherapy courses vary, and can require daily or weekly appointments for several weeks or months. Average round trip distances of 95 miles per treatment (the third longest distance in the UK) add to the burden of illness for children, young people and families living in Northern Ireland.
The benefits of families being together at such a difficult time cannot be over emphasised. However, to achieve this families face a stark choice between the financial burden of staying in a hotel, or making round trips of up to 176 miles per day. These pressures occur at a time when families are coping with the side effects of treatment, including fatigue, nausea, temperature regulation problems and compromised immune system, all in addition to the symptoms of the underlying cancer.
Impact of the Trust’s Support
The opening of Paul’s House gave families an alternative. This facility, part funded by The Sir Jules Thorn Charitable Trust, provides a clinically safe, free and family-friendly accommodation, close to the hospital. Between February 2014 and January 2015, 95 families from all counties in Northern Ireland used Paul’s House, with the majority coming from Tyrone, Fermanagh, Londonderry and Armagh. These included 6 long stays and 12 returning families. The need for this important facility is reflected in the average occupancy rate of 82% - the highest of all the CLIC Sargent homes.
Families who have stayed in Paul’s House describe it as a lifeline. In addition to the obvious financial benefits of not having to pay for hotels or travel, Paul’s House affords practical help such as being able to prepare nutritious food in the shared kitchen, or being able to see a social worker or psychologist away from the hectic ward environment. The emotional benefit of having a safe environment in which to stay, located close to the hospital cannot be over stated.
Behind the numbers, the impact of Paul’s House is best shown by the feedback received from the families themselves:
“Thank you for giving us this special time to spend with our daughter”
“It was such a blessing to have somewhere where our other child could be looked after and kept close to us while her brother was receiving treatment”
“Paul’s House is an absolute God Send. It would have been so much harder on us if we didn’t have it”
“Everything we needed was provided”
“Don’t know how we would have coped without Paul’s House”
“Sincere thanks and appreciation to the House Staff. They were extremely helpful at all times. They will remain family friends for life”