If money can’t buy happiness, can the act of giving it away make you happier? The pursuit of happiness to coin a phrase, varies per person and per organisation. Happiness and fulfilment at The Hospital Saturday can be found in the knowledge and evidence that our grants contribute to the improvements of lives from many walks of life.
The past few weeks have been packed with visits to assess grant applications to help a variety of causes in both the UK and Ireland.
Epilepsy Society Visit on 26th July 2017
I visited the Epilepsy Society to assess a grant application for a -80c freezer, which will be used to hold patient samples.
I met Clare Pelham, Chief Executive, Professor Sanjay Sisodiya and Amanda Ball, Director of Fundraising. Professor Sisodiya gave me a tour of the Charity’s research facility and an insight into his work using genetic sequencing to assist in the treatment of his patients. He explained that genetic sequencing will mean Professor Sisodiya will be able to treat patients with the correct drugs. The Epilepsy Society is the world leader in the treatment of the condition. This is assisted by the research laboratories and Professor Sisodiya’s patients being on the same site. In fact, in the week of my assessment visit, I had met a person with epilepsy in Dublin, who had been treated by Professor Sisodiya and thought very highly of him. The -80c freezer is required to store greater numbers of patient DNA for genetic sequencing.
Suzanne House Visit on 27th July 2017
Suzanne House was opened in June 1986, and is named after a little girl who died at the age of 13 years, sadly, following a long illness – SPHE (a rare measles related virus). My visit to Suzanne House was to assess a grant application for a medical bed.
Suzanne House a holistic view of care, where the child and their family are viewed as one unit. Most children with high medical needs will have these needs met by their family supported by locally provided services. Suzanne House provides a specialist service which encompasses nursing care and social supports for these children.
All the hospice equipment seemed well used and it was very apparent that a new medical bed would make a huge difference to the children’s lives. In the Leinster area there is only one other children’s hospice, so Suzanne House is struggling to meet the demand from parents. Even so, the Hospice offers 30 days of respite care per year to each child.
Helium Arts meeting on 27th July 2017
Helium Arts is the national children’s arts and health organisation. Helium collaborates with professional artists to research, develop and pioneer arts practice in partnership with healthcare professionals. Helium is a leading contributor to arts and health policymaking in Ireland and are
committed to mentoring artists and healthcare providers through professional development programmes.
I met Anna McCarthy, Fundraising and Development Manager to assess a grant towards their Fireflies Project. Fireflies is a three year (2015-2018) artist-in-residence project for teenagers in hospital which investigates how the arts can support transition to adult care by promoting independence, decision making skills, communication skills and improved self-esteem. Artist Rachel Tynan and the teenagers work together as equals to develop new work that focuses on the teenagers’ interests rather than on their illness and encourages them to become an expert, whilst also encouraging them to take control of the creative process.
Disability Federation of Ireland meeting on 27th July 2017
I met Joan O’Donnell, Development Manager, and Day and Karen Keely, in Dublin on 27th July 2017, to assess a grant towards the FACS Forum Awareness Campaign.
FACS occurs in children born to women who were prescribed medication containing sodium valproate during pregnancy. This medication is known as Epilim in Ireland. It is widely prescribed for Epilepsy and Bi-Polar Disorder and other conditions such as migraine (although it is not licensed in Ireland for migraine).
FACS Forum is a group of patient representative and disability organisations that have come together to advocate for better services and supports for families and children affected by Fetal Anti-Convulsant Syndrome (FACS).
Karen Keely administers the Forum on a voluntary basis. She is epileptic and has three sons aged 30, 22 and 18 who have FACS. Karen told me that sodium valproate is still being prescribed to pregnant women in the UK and Ireland. Unfortunately, the drug is a very common and an affective medication for epilepsy. Karen presented a powerful case for the FACS Forum. In fact I spoke to Clare Pelham, the Chief Executive of the Epilepsy Society, and she confirmed that in the UK a court case was pending about this issue. The feeling is that this will be a similar situation to Thalidomide. The French Government is already paying compensation to victims.
Recovery Haven Kerry and Enable Ireland visit on 8th August 2017
Account Executive Kay Madden and I visited Recovery Haven and Enable Ireland in Kerry on 8th August 2017, to present a cheque for €10,000 towards a cancer support nurse for Recovery Haven and to present a cheque for €12,400 for a Hydrotherapy Pool Project for Enable Ireland.
Recovery Haven Kerry Cancer Support House, delivers caring and therapeutic services to those who have experienced cancer, their families and carers in a tranquil and relaxing environment and to the highest standard. Enable Ireland provides services to children and adults with disabilities and their families from 40 locations in 14 counties in Ireland. The Charity focuses on the person, not the disability.
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