I thank Senator Mary White, in particular, for taking the initiative some months ago to invite me to come before this committee and also the Chairman, Deputy Ó Fearghaíl, for sending me the official invitation.
I am chairperson of Children in Hospital Ireland. We are a registered charity which provides volunteer services for sick children in 20 hospitals throughout Ireland, the locations of which are printed on the back of the red leaflet.
The background to Children in Hospital Ireland is unique. We were founded 40 years ago and therefore this is our ruby year. We were founded in 1970 by Mrs. Patricia Hemmens, an ordinary housewife and mother from Malahide. There was no big deal about this woman. She did not like the experience she had when a child of hers was a patient in hospital and therefore she set about challenging the system.
Once upon a time, when a child was admitted to hospital, his or her life was changed utterly for the duration. The conditions were harsh and sometimes, although unwittingly, somewhat cruel. Parental visiting was severely restricted. Starched white sheets, acres of polished floors, discipline and absolute order was the routine but that is not normal for a child. Play, the natural occupation of any child, was not part of the healing process and therefore Mrs. Hemmens sought like-minded people and together they formed a group which was the genesis of Children in Hospital Ireland. The aims of the organisation at that time were, and still are, to improve conditions in children's hospitals by creating a culture which could ensure as normal a life as possible for a sick child who was temporarily in abnormal circumstances. Our mission is to make hospital a happier place for the children of this nation.
To that end, Children in Hospital Ireland actively advocated for the following, which I will detail briefly as I am aware time is of the essence — statutory standards for the delivery of health care for sick children; open visiting; parental accommodation on site; wards dedicated for the nursing of children alone and not side by side with adults; the continuum of education while children were in hospital; the provision of information for parents about hospital, preparation for it and any organisation which was essential for aftercare; and the provision of play for all children in all hospitals because play is the normal life of any child. Some of those objectives have been achieved; for example, open visiting is now the norm. There is a move towards providing parental accommodation but the size of hospitals does not always allow for that. It is not coming fast enough but I hope, with the advent of the new hospital, it might be somewhat better. We still come across rare occasions where children continue to be nursed in adult wards. That is not good but it is the position. Education is provided for some children in some hospitals but while we campaign for the continuum of education, that is the remit of the Department of Education and Skills; it is not our responsibility to provide it.
We have provided information in some hospitals under a new designated "just ask service" but, unfortunately, only a few of the larger hospitals have taken up this offer. Playrooms have been built in nearly all hospitals, often, I am sorry to say, by private money and donations. Our volunteers guarantee that those playrooms are open and operational every day. If a child is confined to bed, our volunteers take the play and distraction to the bedside. Some hospitals have fully trained play specialists on their staff and our volunteers work under their guidance. In cases where there is not a play specialist, our volunteers work directly with the ward managers. The phrase "a lot done, more to do" comes readily to mind.
Turning to the work of the organisation, CHI is affiliated to the European Association for Children in Hospital. Together with this group, we have drawn up a charter of statutory standards which sets out the best practice for delivery of health care of children and I included in the presentation a copy of this charter for members' information should they like to read it at some time. CHI works closely with the HSE and the Department and Health and Children in all matters regarding the delivery of health care to sick children. We interact closely with Action for Sick Children in the UK and we meet frequently with the European members to keep abreast of events in other countries. We recruit, train and manage volunteers and assign them to hospitals of their choice. We work closely with the Garda Síochána on the strict vetting procedures. However, the time that this vetting procedure takes can be a problem. It can take six weeks or two months by which stage some of the would-be volunteers have become frustrated. We have spent money training them and some of them may go to some other organisation and we lose them. We understand this process takes time but it is a pity it cannot be speeded up a little. We offer further training courses to any volunteer who might need it in the area of health care. We have run a successful course which teaches volunteers how to cope with young people who have eating disorders; this has been a very popular course. We hold fun days in all our hospitals. As a series of events to mark our 40th year, last week we started a nationwide tour bringing fun to children's hospitals all over the country and the first stop was Drogheda. Eight years ago we inaugurated the annual Children in Hospital Ireland lecture, which has been addressed by distinguished speakers both from within and outside the medical profession. In May of this year we hosted an annual conference in Dublin Castle, primarily on the topic of the new children's hospital. That covers the work of the organisation.
The work of the volunteers is rather specific. Children in Hospital Ireland is the only charity operating a play service in hospitals in this country. No other organisation brings unconstructed play to children. We have more than 400 trained and Garda vetted volunteers in the 20 hospitals. They provide 40,000 hours of committed, unpaid service to the children of this nation every year. They organise activities for these children and create as normal a life as possible for the children during their time in hospital. In the country we have team leaders selected from good volunteers and our service manager liaises with the team leaders on a daily basis and travels to the hospital several times a year.
Our volunteers are exemplars of discipline, motivation, generosity and commitment hail, rain or shine. Notwithstanding good days for golf or tennis, our volunteers turn up every day on time in these 20 hospitals. If they are not on time, the children are there, some of them attached to drips and other equipment, saying, "what kept you?". Children leaving hospitals with happy memories seem to be much easier to handle when they go home. They bring home less trauma with them, they seem to regress less in their development and they seem overall to be less needy children. We have come across adults who have told us that they find it very difficult to integrate in life and society and have done so frequently as a result of a long hospital stay when they were in their childhood. Some children in those days had to stay in hospital for up to a year or more with TB and other conditions. Thankfully, that does not happen any more, but those people did not bring home happy memories.
Should a child become ill today, Children in Hospital Ireland and its volunteers are always there to help those parents in times of distress. I have had five children and I have not had the experience of many parents who today are more or less expected to book themselves into the hospital with the child. I understand the psychological reasons for that but it is not always possible. There are cases where parents, who are lucky enough to have jobs, are afraid to, or cannot, take time off. I have seen mothers torn with emotion between wanting to stay with a sick child while knowing there are three, four, five or six more at home who need them just as much. Most sadly of all, and it is difficult to comprehend this in 2010, I have come across parents who cannot afford to be in hospital with their children. If they do not have a car they cannot afford the fare. They cannot afford the food to feed themselves when they are in hospital. They cannot afford baby-sitting for the children at home. Surely in an era like this when there are such social and family problems, an organisation like ours is the answer. A few years ago I worked alongside Ms Eithne FitzGerald, who carried out some research for us on the cost of having a child in hospital — not the cost to the State which is given, but the cost to the parent. The findings were staggering. It was anywhere between €80 and €110 per week on top of an already stretched budget for one parent to have one child in hospital. Parking charges in hospitals are a deterrent. It was very interesting to me that at times of good employment and good economic prospects people still found it difficult. What must they think today?
Each volunteer whom we train is closely vetted to within an inch of his or her life by gardaí. If a parent cannot be in hospital he or she can have no worry about our volunteer who interacts with that child. In this day and age that is quite important.
The new children's hospital is another subject close to my heart. To ensure that our services continue to be provided and utilised we need to operate a watching brief. I am particularly interested to know what will happen with this new children's hospital. I am very anxious for it to go ahead but I would like to know what services will be provided for the children and the parents. Will there be an update of what is there already? What services and facilities will be there? What role will our volunteers have therein? We have 40 years accumulated experience and expertise in delivering normal life to children in abnormal circumstances and we would be very happy to share this with the board of a new hospital and anybody else who might be interested.
There are some stumbling blocks to the work of Children in Hospital Ireland. Normally it goes quite well but some of the stumbling blocks could be as follows — I will not go through them all. I often find a tacit reluctance on the part of some hospitals to deal with unpaid staff. I do not know why that is. There could be many reasons. It could be that paid staff do not appreciate or understand the role of a motivational volunteer. It could be lack of managerial expertise in hospitals which finds it impossible to co-ordinate the services of volunteer staff alongside paid staff and some paid staff feel under threat. Every one of our volunteers has a career in his or her own right; so we do not offer a threat to anyone. The volunteers are just well motivated people who want to give things back to society.
I also find a lack of appreciation on the part of medical staff and other hospital personnel. I have heard our volunteers on occasion referred to as "just volunteers". That is very unpleasant. I would like to see Irish society taking a lead out of the British Prime Minister's, David Cameron's, book. What he has espoused could be accommodated alongside paid staff. He is not the first person with these kinds of views. Research has been carried out in Ireland by the ERSI with the task force on active citizenship, which recognises the importance of civic engagement. If these ideas were implemented, what a world we would live in. It would be sheer utopia where everyone benefits and everybody is a winner. Can one ask for anything better than that?
Funding is a problem — the dreaded four-letter word "cash". To keep these charities afloat, CHI needs sustainable funding. Currently most of our finance comes from the central Exchequer. However, we undertake small fund-raising activities within our core groups of volunteers. One of the Dublin groups had a large barbecue sometime in August which was a great success. I am not sure how much we raised — perhaps €500. It was not a very large amount of money but is better than being minus €500. We are not a fund-raising group. We do not have the expertise or the knowledge. We have a small Dublin office. We have three paid staff, whose full time occupation is co-ordinating and managing this massive national endeavour on the part of all our children and grandchildren for those of us fortunate enough to have grandchildren. We are not a fund-raising organisation. Funding is always a problem.
I have some aspirations for the future of Children in Hospital Ireland. I do not know whether members of the committee want to hear them. I know that time is of the essence. I will run through them very quickly. I would like each charter to be written into legislation and implemented immediately in hospital care for children. At the moment medical people look at this and they use it like a menu. They cherry pick the bits they think they can use today and they do not have to use it tomorrow. That is not good enough where children's health is concerned. I would like Children in Hospital Ireland to be known by every single mother who gives birth on the basis that it is better to be forewarned than to be shocked should an illness befall her child. The responsibility for this could be attached to the maternity hospitals. Our leaflets, which are very colourful and which I have before me, should be given to every new mother. After seven long years of persuasion last Thursday Mary O'Connor and I made a breakthrough and succeeded in getting a tiny representation in the National Maternity Hospital. It is very small but small is better than none. I would like to see if the other maternity hospitals can follow suit. Because of the competition there, she cannot have it if I cannot have it. So a maternity hospital sets the bar quite high. The dialogue will continue.
I would like parental accommodation to be available on site as a matter of course for every parent who requires it at a price they can afford. I would like play to be considered an integral part of the healing process of any sick child in the very same way that any other therapy is considered part of the healing process. I have a personal conviction about this. Doctors do not always recognise it. Modules should be introduced in the training sessions when young people are studying in medical college. They should be convinced of the efficacy and importance of play towards the improved condition of a child.
What is achievable out of CHI's vision? All of it is. All we need is the co-operation of the HSE with which we have very good relations, hospital personnel with whom we have reasonably good relations — it is good in some places not so good and others a bit like the parson's egg. Parents can come on board a little more often. Local communities can become a little more involved with us and with funders. Our organisation is unique. Unlike some children's charities which are involved with Down's syndrome or other particular medical conditions, our charity touches the lives of every man, woman and child. While not everybody has children, we were all children once and we all know the emotions, sentiments and conflicts involved in having separation of child from parent or a child having to go to hospital. That is why it touches everybody.
The successful and complete recovery of a sick child is not all about the doctor and a nurse. I accept they are very important, but they only form part of the story. It is just as much about the child's experience in hospital and the memories he or she takes home. We try to ensure the memories are good. We do not win them all, but we try. We are a very compassionate group of 400 committed volunteers, but we are also realists. We do not expect every child who was discharged from hospital today to think that he or she has been on holiday in Disneyland or out to tea with Snow White.
If I may, I will digress for one moment. I have been with Children in Hospital Ireland as a volunteer in various capacities for 12 years. When I started this work I met a child in the hospital in Crumlin who was terribly distressed. As part of the volunteer training we do not ask the child what is wrong. So I sat there and waited for her to tell me. Her mother drove her from the country and told her she was going for a holiday. She left that child in the care of the hospital. Members should think about that. When I subsequently met the mother I discovered that she had such a traumatic experience while in hospital in the 1950s with polio that she could not bring herself to foist the same sadness upon her child. We in Children in Hospital Ireland hope that would never happen again. We are looking forward with anticipation to the next 40 years. I will not be there but I hope somebody will pick up the baton and run with it.
I thank the members for listening to me. As the fellow said, "Follow that".
