JOINT COMMITTEE ON HEALTH AND CHILDREN debate -
Tuesday, 27 May 2008

Muscular Dystrophy: Discussion with Muscular Dystrophy Ireland.

Vice Chairman (Deputy Jan O’Sullivan)

I welcome Mr. Joe Mooney, director of Muscular Dystrophy Ireland, Ms Kate Power, respite co-ordinator, Ms Karen Pickering, information officer and Ms Sammy Brill.

I draw attention to the fact that members of the committee have absolute privilege but that the same privilege does not apply to witnesses appearing before the committee. Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable. Members may ask questions after the briefing.

Mr. Joe Mooney

I thank the joint committee for allowing us the time to make a presentation on Muscular Dystrophy Ireland. Our invitation to appear before the committee came on foot of a Members' day we held on 9 April in Buswells Hotel which was attended by several members of this committee.

Muscular dystrophy is a neuromuscular condition characterised by a progressive weakening and wasting of muscles. There are many different types of muscular dystrophy but the most common type is Duchenne, which is also the most severe. The life expectancy of those with Duchenne muscular dystrophy is dramatically reduced.

Time is not on our side. As already stated, we had a meeting on 9 April. Since then, two of our members have passed away. The first would have been 18 in September and the second was 18. One of them spoke to members on 9 April and put forward our case.

I wish to introduce Kate Power, our respite co-ordinator, who will discuss the different supports we provide. After that, Karen Pickering, our information officer, will outline the position in respect of research and other issues. Ms Sammy Brill, who is both the secretary and a member of Muscular Dystrophy Ireland, MDI, will outline what it is like to live with the disease. I will then conclude.

Ms Kate Power

MDI provides a number of services that are invaluable to its members. The material circulated to members provides information on family support, respite care and transport. These are the areas in which we provide our main services.

In Towards 2016, the Government made a commitment to improving the quality of life of people with disabilities. I will outline the services that need to be developed in line with supporting people living with muscular dystrophy.

The first area in respect of which services must be developed is that relating to respite care. Respite is essential for carers and people with muscular dystrophy to allow them to access breaks, which are essential in maintaining their emotional and physical well-being. People with muscular dystrophy generally require respite in the home as opposed to that provided in residential settings. MDI provides short-term respite but with limited funding we cannot provide support to all the members who need it. Additional funding is necessary for longer term respite care through other agencies.

The second area is that relating to personal assistants. People with muscular dystrophy have a real need for such assistants to access education and employment and to get on with their daily lives. At present, members apply to agencies such as the Irish Wheelchair Association and the Centre for Independent Living. However, because there is such demand and in light of the lack of funding, accessing the services of a personal assistant, PA, is extremely difficult. As a result, members find it difficult to gain independence and obtain support and are, therefore, reliant on the State. If a person has a PA, it means he or she can travel, work, socialise and become a full member of society. There are currently 48 members of MDI who need PAs but who have no hours, 50 members have PAs but they require more hours and there are 77 who will require PAs within the next five years. The latter is a rough estimate.

The third area is that relating to access to community services. There is inequality of access throughout Ireland in respect of community services such as physiotherapy and occupational therapy. At present, 97 members of MDI are not in receipt of physiotherapy and 20 who cannot access the services of an occupational therapist. Waiting times for aids and appliances are too long and it can take up to one year to access an item of equipment. Some 42 members are currently waiting to receive the equipment they require. At the conference we held earlier in the year, the members of one family in Limerick stated that their son had been assessed for splints three months previously but that he was still waiting for them. By the time he receives these splints, he will probably have outgrown them. This is an example of the frustration families experience.

The fourth area to which I refer is that relating to special needs assistants. Children and young people with muscular dystrophy who attend school will require special needs assistants as their condition progresses. Such assistants are essential and help their charges with taking books out of their schoolbags, turning on computers, travelling between classrooms, eating lunch and personal care activities. At present, 50 children with muscular dystrophy are using the services of special needs assistants in schools. In the next five years, however, a further 34 will require such assistants.

The fifth area is that which involves housing and transport. People with muscular dystrophy require accessible transport and house adaptations and these can be costly. MDI supports its members by providing transport. It is much easier to provide transport to those based in, for example, Dublin or Cork. It is, however, extremely difficult to provide transport services to those living in rural areas.

We recommend youth workers. One of the services provided by MDI are family support workers. Throughout the country we have eight such workers who link and deal specifically with families. They are able to link these people to the HSE, the IWA, schools and whatever they need.

Running in conjunction with that we have five youth workers who provide an activity or programme of social activities for young members. This is where access is easier because of adapted vans, for example. It provides a break or some respite for parents and siblings. We do not just link the service to the young person. They get to go on social outings and we have facilitated people going on their school tour a number of times when the school itself has not been able to provide access or somebody with training to go on the school outings.

One of the most important aspects of the youth service is that the young person gets used to somebody outside the family coming in to provide personal care and a break for families. This is essential in supporting families.

There are three regions in Ireland where there are no youth workers and families are calling out for them. These are: the south-east region including Wexford, Waterford, Carlow and Kilkenny; the mid-west region including Limerick, Clare and Tipperary; and the north-west region including Donegal, Sligo and Leitrim. Today we are looking for support in funding development of our youth service so we can have it in line with family support.

Ms Karen Pickering

As we stated earlier, muscular dystrophy affects muscles, but not just the skeletal muscles, or those used for walking and arm strength. It also involves heart muscles and those used for breathing. When people use a wheelchair they can get a curve of the spine which can require spinal surgery. MD is genetic so people need genetic counselling and testing facilities. They may also require speech and language therapy and psychological services. In some cases there can be learning difficulties. Although they might be mild they still require some form of intervention.

People might need aids and appliances, along with adaptation of their homes and social welfare entitlements. They must negotiate their way through a significant range of different Departments and services. These people need a co-ordinated approach to care.

In order to manage the condition, multidisciplinary teams seem to be the best approach. MDI is working closely with health care professionals to ensure members needs are met to the highest possible standard. We have a clinic co-ordinator who attends to two clinics, one for children in the Central Remedial Clinic, CRC, in Dublin and one for adults in Beaumont Hospital. The clinic co-ordinator attends to provide support to families, as travelling from the country to Dublin to attend the clinics can be quite stressful. One does not really know what will be said on the day. A person might be told the condition has deteriorated and it is important to have somebody there as a support.

We had a conference on advances in the care of Duchenne muscular dystrophy in March this year, organised in conjunction with Dr. Bryan Lynch, the paediatric neurologist from Temple Street and the CRC. It was supported by some of Ireland's leading specialists in the treatment of muscular dystrophy in the areas of neurology, physiotherapy, orthopaedics, respiratory and cardiac care. Those specialists gave their time to talk to families on a Sunday — mother's day as it turned out — so there is a desire on the part of that community to give the highest standard of care to people with muscular dystrophy.

There are some barriers to this objective. The CRC clinic is running well and there is a multidisciplinary team there. It does mean people have to travel from around the country to get to it but once they get there the facilities are good. The problem is mainly with the adult clinic in Beaumont Hospital. The neurologist there works almost on his own so if people come from the country the appointment lasts perhaps ten or 15 minutes. They may be called back again for a respiratory or cardiac appointment.

Dr. Walsh from Beaumont Hospital has indicated his service would be improved by having a multidisciplinary team working around him, including a physiotherapist, occupational therapist, social worker, genetic counsellor and possibly a neuromuscular specialist nurse. Such a team would enable him to provide the best standard of care for members.

People with muscular dystrophy are living longer and therefore there are more children moving from children's services into adult services. As they get to the adult clinic, however, their condition is deteriorating but they find that the standard of service they are getting is not as good as that available when they were children. That is a problem we would like to examine. We want the adult service to be at least as good as the service children are getting in the Central Remedial Clinic.

We must ensure also that between clinic visits the community services — physiotherapy and occupational therapy — are available in local areas. I am aware that some members of MDI are having difficulty accessing those services, particularly in Wexford and the north east where people are having difficulty getting occupational therapy services.

Because muscular dystrophy is a genetic condition the people affected need genetic testing and counselling. That is done through the National Centre for Medical Genetics. That centre is still not funded to provide a nationwide genetic testing service and is working with four consultants to cover 4 million people in Ireland, whereas Belfast has six consultants for the 1.5 million to 2 million people living in Northern Ireland. That means the centre is stretched to a greater degree and there are longer waiting lists for some of our families to access testing and counselling. Testing is important because there are different types of muscular dystrophy. People need to know the type they have to understand if there is a chance of any other members of their family being affected or if they have to make decisions as to whether to have children.

Currently there is no cure and no definitive treatment for any form of muscular dystrophy. Getting access to these services, particularly cardiac and respiratory monitoring and treatment, was shown to increase life expectancy in boys with Duchenne muscular dystrophy by over ten years between the 1960s and the 1990s in the Newcastle region in England. That was because of access to assisted ventilation, which can help with one's breathing, and to cardiac treatment. It is essential that everybody gets access to those specialties.

Research into MD is progressing and clinical trials have begun. When I started working with Muscular Dystrophy Ireland five years ago, such trials were considered so far off that people did not think about them. Clinical trials have now started in the United Kingdom. The EMDEX consortium is examining exon skipping as a potential therapy for Duchenne muscular dystrophy, with the possibility of it being used for other forms of muscular dystrophy if successful.

The research is progressing well. It is hoped EMDEX will move to the next phase of the trial at the end of this year. A number of Irish families are heavily involved in fund-raising to try to ensure that this research progresses to its conclusion. It is currently funded only to the end of the next phase of the trail but a number of other phases of the study will be needed after that.

Boys from Ireland are now eligible to go to England to participate in the clinical trial. That is something that happened recently and we would be optimistic about it but we must plan for the future. Ireland does not have a strong clinical research tradition but it is becoming more important. These issues are becoming more of a reality. Beaumont Hospital and the CRC are asking for research nurses to co-ordinate involvement in any future clinical trials.

In the event of genetic treatment ever becoming available, people will need to know the precise genetic mutation they have. Therefore, we might have far more families contacting the Centre for Medical Genetics to know the form of genetic mutation they have and whether there are any treatments that would benefit them. We might anticipate that in the future there would be further pressure on an already stretched genetic service. I will hand over to Ms Brill who will speak about living with the condition.

Ms Sammy Brill

Three years ago I decided I wanted to live independently of my mother and family. I tried to get a council place but there were no empty houses in Athlone. I came to Dublin to try to get a house here but was told that because I had not been resident there I could not get a house in Dublin. I returned to Athlone and told the council I needed a place of my own as I was 26 years old and wanted to move out. I asked whether there were any houses and the council said there were not. I then went to Brawney, in Athlone, near the new sports centre because I knew there were flats there which were empty. Eventually, they adapted a flat for me, while I was waiting for a house to be built. I recently discovered, however, that houses are not being built at all now, but at least I have my flat. It is tiny, though, and the bathroom is minute. They wanted me to get a hoist to be lifted because they are not happy about my bath arrangements. It will not fit in the bathroom, however, since it is tiny.

My other problem is that I do not have sufficient care hours to live in a house. I am 42.5 hours short of a personal assistance service, which means that three nights a week I am expected to return to my mother's house. The health board has been aware of my family situation for about three years. I have had an ongoing conflict with my mother, which has been worsening, and I wanted independent living. The health board has left me in a situation whereby I now have to insist I am not going home. I cannot live with my mother any more; I am not going home and shall live in my flat.

At the moment I am relying on volunteers and the help of friends to get by. Before Christmas I had a chimney fire and if it had not been for a 14 year old girl who was with me at the time, I would have been left in that flat on my own. Living with a disability has meant that I have been brought up to be very independent-minded, so I shall fight for my rights. However, for someone who has not got a strong personality or who does not have it in him or her to fight, and is in much pain because of the disability, it can be very difficult. They have to fight for things. Sometimes one meets a brick wall. If one needs a physio one must keep ringing and insisting on what one needs. These services should be there, automatically. My wheelchair is falling apart. It is taped up with plastic masking tape, just because the funds are not available to get a new one. If I do not have a wheelchair, however, I cannot go anywhere. I just have to sit in the chair at home. The footplate is falling off the wheelchair. I ring the hospital to be told there is no funding for a wheelchair and that I shall have to wait six months. What am I meant to do if my wheelchair falls apart?

The funding is not there and the waiting time is ridiculous — six months, when there is no money for a wheelchair in the first place. The money needs to be put in place for these services, and the time for delivery needs to be improved on. Disabled people are living their lives in the community every day, but they may not have a long life in many cases. Luckily, my form of muscular dystrophy is non-progressive, but there are many people with this condition who might not live beyond their early 20s. This is the reality. These people just want to get a place of their own and live their lives like anyone else. However, they are having to fight for everything. Members of the committee are in a position of power to improve these conditions.

I went to Brussels recently and we were all talking to each other about different policies that needed to be changed, but there were not sufficient people in power there to make these decisions. If members of the committee can make decisions, they should do so, and try to make it somewhat faster, because my wheelchair is falling apart.

Vice Chairman

I thank Ms Brill for putting the position so clearly to the committee. While we may not have the power she speaks of, the committee can certainly make recommendations. I thank all the witnesses for the presentation.

Deputy James Reilly

I thank Mr. Mooney, Ms Power and Ms Pickering for attending. I also thank Ms Brill for her personal account which provides a real perspective.

I read the delegates' recommendations and have no issue with any of them. If we are not carrying out the required research in Ireland — the research is promising — we should be funding part of it in the United Kingdom. I ask the joint committee to support the case in this regard such that the Minister will make funding available. The research is offering some hope to certain individuals with Duchenne muscular dystrophy. I am very saddened to hear of the death of two affected individuals, one of whom, Dara, died this weekend in County Donegal. I offer my condolences to his family.

The issue of neurologists is very relevant in that we just do not have enough in any area, let alone in muscular dystrophy services. The point was well made about child and adult services. In the CRC there is a centralised service for children with a full team present but this is not mirrored in the adult service. This should be addressed urgently and clearly would not require a considerable sum of money. I hope we will secure the new contract with consultants so as not to block the appointment of new consultants, whom we need so badly.

The fight of sufferers from muscular dystrophy is one we can hardly begin to understand. We will certainly take on board the request for basic items such as a functioning wheelchair. Personal assistance makes the difference between independent living and being dependent or institutionalised. The request in this regard is straightforward and merits our full support.

I thank the delegates for attending and making their case so cogently and clearly.

Senator Phil Prendergast

I thank the delegates for their presentation, from which it is clear that the provision of funding for a range of services to assist and support those with muscular dystrophy is essential. Improving quality of life presents a major issue, as do funding and the need for special needs assistants, respite care, modified housing, transportation and access to community services which have a direct impact on the quality of life of those living with muscular dystrophy. There are constraints in that the umbrella covers so many aspects of care that it is very difficult to hone in on any one, in particular.

Ms Brill has outlined what it means to be in need of a small part of a mechanical piece of equipment that can have such an impact on her quality of life. This requires very little money but is a matter of addressing the need quickly in an unconvoluted manner. Not meeting this need seems so bizarre that it does not make sense.

There is a great need to have muscular dystrophy clinics beyond Dublin. There are only two such clinics and having to travel great distances from all over the country thereto has a considerable impact. Even able-bodied people must plan their journeys, such that they will know where to stop if they need to go to the loo, for example, but the needs of those with disabilities are much greater because of restrictions on access. It is essential that the Minister who advocates the multidisciplinary approach puts in place a team to co-ordinate the various disciplines involved in providing an holistic plan for those with the condition. We need to ensure the necessary resources, including geneticists, respiratory teams, occupational therapists and physiotherapists, are in place and accessible. This would contribute to a distinctly better quality of life.

We should contribute in no small way to research that might lead to improvements in the quality of life of those with muscular dystrophy. The allocation involved, €1.5 million, is large and would genuinely represent a meaningful gesture that might assist in helping those with the condition. I recommend to the committee that the contribution be made.

Deputy Margaret Conlon

I thank the witnesses for their attendance. They have brought much important information before the joint committee. Ms Brill's personal experiences of the challenges of everyday living for anyone with a disability, and what the rest of us take for granted, brings home to members the difficulties such people face. Ms Brill's desire to live an independent life in the best possible way and to have the best possible quality of life constitutes a right as far as she is concerned and I support this. Irrespective of disability, it is important that people should have the opportunity to live as independent a life as possible with whatever support they require to do so.

I agree with the witnesses on the great importance of respite care. Living with a disability puts a huge strain and pressure on all families and respite gives such families the degree of recognition and support that can make a huge difference. This is essential for the well-being of the family members as well as for the individuals themselves. Respite offers huge potential and opportunities to the person with a disability and I consider this to be highly important.

The presentation referred to the number of special needs assistants, SNAs, in schools. I come from an educational background and SNAs did not exist when I began teaching. Some children who attended school struggled because they did not receive that degree of support. The ability of children to avail of such support in school is welcome. Something as simple as getting one's bag to class, organising one's books, carrying one's computer or whatever makes a huge difference to such children and allows them to participate more fully in the educational process. It also gives them a degree of independence referred to previously. Ms Power stated that 50 children with muscular dystrophy use SNAs. Is that the number of children in Ireland who have muscular dystrophy or do some children not have access to SNAs at school?

Ms Kate Power

While that is the number on our system, there probably are just as many, if not more who are not members of Muscular Dystrophy Ireland for whatever personal reasons. Doubling that number probably would be more——

Deputy Margaret Conlon

My understanding is there is no difficulty in getting an SNA when a case is made for it. Were children not getting access to an SNA because they were not members of Muscular Dystrophy Ireland, it would be unfortunate. While such children may not have applied for such assistance for one reason or another, it should be encouraged because it provides them with a degree of independence.

I recognise and appreciate that research is becoming much more important in all facets of medicine and disability. While there is no known cure, I am sure better ways will be found to help people who suffer from muscular dystrophy and of managing the condition. My final point refers to funding. I note the documentation provided to members by Muscular Dystrophy Ireland refers to funding it receives from the Government. What funding does Muscular Dystrophy Ireland receive from the Government?

Vice Chairman

Unless the Deputy objects, we will take the answers at the end after all the contributions have been heard.

Deputy Margaret Conlon

I thank the witnesses again for their presentation.

Deputy Charlie O’Connor

I wish to be associated with the warm welcome extended to the witnesses. Mr. Mooney was kind enough to write to members after meeting them that day. I remember the day well because it was my birthday and at my age, one remembers one's birthdays better than other days. I found this to be an important exercise.

I am not allowed to name names but I bring my life experiences to politics. Some 30 years ago I worked with a young woman whom the delegates will know because she and her brother have been involved in their organisation. She taught me many things, although times were different 30 years ago. She taught me to understand what it was like to cope with her difficulties. Somebody spoke of bathroom facilities. She had to live on the ground floor and so on. I learned many lessons from her and 30 years later we try to use such experiences at this level. Ms Brill's presentation hit the spot in that regard. I compliment all of the delegates but Ms Brill's presentation, in particular, struck a chord.

I note that after the Oireachtas day the organisation sought to highlight a number of aspects. It is important that we appreciate the significance of these sessions. I have often said the joint Oireachtas committee model is a good one. There may be different views but I believe more meaningful work is done here than in the Chamber. Do not tell anybody I said that, however. Real work is done at this level where we have an opportunity to greet delegations, listen to their concerns and learn of their needs. As the Chairman said, we try as best we can in our different roles to make recommendations. We try to create a situation where when delegates return, we can say as many boxes as possible have been ticked. This is an important exercise. I advocate what the delegates are doing in lobbying the political system, bringing information to us and highlighting the good work being done. As Deputy Reilly said, it is only when one hears of people passing away that this matter strikes home. I am struck by the delegates' phrase that time is not on people's side. Every person who enters these rooms has needs and issues and wishes to have them addressed by politicians. The delegates have made strong points and, without being patronising, it is important that we indicate we will support them in every way.

In the presentation and earlier correspondence the director pointed to lack of access to community services. I am interested in this issue because, with regard to the HSE model, we are told such services are the way forward. How do the delegates feel about this? The matter is obviously not progressing as quickly as they would like.

I thank the delegates and congratulate them on the presentation.

Deputy Beverley Flynn

I thank the delegates for the presentation. I enjoyed the launch in Buswell's Hotel and met many children that day who suffer from the condition. It was great to get an insight into how it impacted upon sufferers.

The presentation contained a great deal of detail and a breakdown of information relating to individual counties. Having looked at the organisation's services and listened to Ms Brill's story, I wonder what the experience is, from county to county, regarding housing. Is her story typical of the problems people experience throughout the country in this regard or is the problem more localised in the specific area concerned? Funding was allocated recently in County Mayo for the building of houses adapted for people with disabilities. I wonder what the experience is in other counties. In my county only 11 people are affected; therefore, the problem is not as great as in cities such as Dublin and Galway.

I join my colleagues in saying the points relating to respite care and personal assistants were well made. For a person to have quality of life a personal assistance service is hugely important. This is not just the case for those suffering from muscular dystrophy because we regularly encounter people with disabilities seeking such a service. I have always supported the provision of this service.

Three areas were mentioned in which the organisation would like to place a youth worker. There is a youth worker operating in the Galway, Mayo and Roscommon area. [Deputy Beverly Flynn]What services does the youth worker provide on a day-to-day basis to somebody suffering with muscular dystrophy? How many people have this condition throughout the country and what is the breakdown in the younger age group in particular? Are we seeing an increase in the number of people with muscular dystrophy in the younger age groups? Could the representatives give us some insight into current trends with a view to making provision for the future?

Deputy Caoimhghín Ó Caoláin

I join my colleagues in welcoming the representatives here this afternoon. I am sorry I did not hear Mr. Mooney's contribution at the start as I was a little late, but I thank Ms Power, Ms Pickering and Ms Brill for their contributions. I note that the pack Ms Brill distributed to members includes correspondence regarding Ms Brill's experiences. I note one line in which she states: "I made more people aware; not sure if it will help". She then goes on to say: "but it gave me confidence and a little bit of hope." It is important that we answer the uncertainty about that. It always helps. The testimonies given here and at the exercise back in April in Buswells Hotel all help not only to create greater awareness but to fine-tune the abilities of committee members of all parties and none to properly articulate the needs of sufferers.

There are two specific areas in which this is important. The first is our giving the case for increased resources for supports across the board, as all the representatives have articulated. The other is one that was strongly highlighted in the course of the Buswells day by MD family members, and that is the absence of any funding support for research outside this jurisdiction, particularly the ongoing research in Britain, to which we are not a contributor. Across the board I noted commitments from elected representatives of all opinions that this was something they would address. Moving on seven or eight weeks from that day, 9 April, have the representatives had any correspondence from the Minister's office, the Department of Health and Children or the HSE of any revisiting of that reality? This must change. If we do not have the wherewithal to initiate research, we should make a contribution to this research. Why replicate work that is already under way? It is a significant failing on the part of the State. Could the representatives give us some sense of whether any developments have occurred over that period?

Could the representatives explain, in the context of Duchenne muscular dystrophy which affects males, the signalled ongoing research on exon skipping in the neighbouring island? While Duchenne MD is specific to male sufferers, what is the situation with regard to exon skipping? Could the representatives explain what the research might achieve? I am not familiar with what that represents and what potential change the research might signal for those with MD in the future.

Senator Frances Fitzgerald

I apologise for not being here for the presentation. I was in the Seanad, which sits at the same time as the health committee. That is a bit of a problem in terms of attendance.

With regard to the key points made in the presentation, the lack of PAs, physiotherapy and occupational therapy being experienced by a number of members of Muscular Dystrophy Ireland is horrifying. From the point of view of the health committee, I would like to ask that we receive a report from the HSE explaining why sufferers are not getting the front line services they need, which are absolutely critical. I am horrified at the figures given in the report with regard to respite care, PA services, and access to community services and special needs assistants. After 11 years of the Celtic tiger that is the least we should have provided with. The HSE should report to us on each of these areas to determine the reason there is such difficulty in delivering essential frontline services to members of the visiting organisation.

Vice Chairman

The committee should take from this meeting a number of common themes and recommendations, particularly those made by Senators Prendergast and Fitzgerald. I join speakers in highlighting the necessity to fund research. Will our guests inform us of their opinions on what is required? They did this during the presentation at Buswells Hotel.

Were the Disability Act 2005 to be implemented in full, our guests would have an automatic right to receive therapies and personal assistants, be provided with housing and so on. The committee must ensure the Act is fully implemented as soon as possible in order that our guests need not do what Ms Brill described and continually ring to ask when a person will receive, for example, a wheelchair or be provided with appropriate housing. They should be provided as of right. While they are covered by legislation, the provisions have not been fully implemented.

A number of specific questions were asked, but I do not know who wishes to answer them.

Mr. Joe Mooney

We were asked about funding and what we received from the HSE. We receive a core budget of approximately €1 million per annum, but it can be reduced. In recent months we received notification to the effect that the budget would be cut by 1%. As it is we are providing services on a tight budget and to cut 1% from it would be crazy. It would leave us in a difficult position. We have worked with such a budget for four or five years.

As regards the retention of staff, we have not received an increment for any staff member. Inflationary costs such as heating and lighting have gone crazy, but we have not received a budgetary increase in that respect.

We are dependent on fund-raising. We have been told to reduce administration costs and concentrate on supports. However, our organisation must report to the various HSE divisions. Our funding primarily comes from the HSE, northern area, in which we are based, and we must report to it on how we are spending the money. Forms must be filled in every month, but we are still told to cut back on our administration costs. It is not possible. Supports and administration go together.

Health and safety are significant issues. We deal with children daily. Nearly 70% of our members are under the age of 18 years and we must provide for their health and safety. All of this must be documented.

This year for the first time we have employed a full-time fund-raiser. We organise a national awareness day, but there needs to be further fund-raising events. We included figures for our budget in our submission pack. We are always sending applications for funding such as national lottery moneys. We must meet representatives from each of the HSE divisions to seek funding increases, but have been told that no development funds are available.

We are delighted that we have been through the validation process in recent months, but it has taken nearly two years to reach this point. All of the supports we provide are examined in the process, but we are waiting to see how long it will take to complete the process. Must we wait a further two years for our issues to be addressed? We were told that we would not have to wait beyond the end of April, but it is nearly at the end of May and we have not heard one word. We will wait and see.

As I said in my opening statement, we have lost two young members since 9 April, one of whom was 18 years old and the other just short of that age. From an organisational point of view, we have written to thank every Deputy and Senator who attended the meeting and sent an information pack to every Member who was unable to attend. All we are receiving in return are letters of thanks and an undertaking to pass on the correspondence. We are getting absolutely nothing else.

I ask my colleague, Ms Pickering, to explain more about exon skipping.

Ms Karen Pickering

The exon skipping technique is a type of gene therapy which could potentially be applied to other forms of muscular dystrophy other than Duchenne. Most research starts with Duchenne because it is the most common and most severe form of muscular dystrophy. In addition, more is understood about what causes this form of muscular dystrophy. That is why all the clinical trials begin in that area.

Out of a total membership of 478, we have 90 boys with Duchenne muscular dystrophy. That number is constant because as there are new diagnoses, older boys are, unfortunately, passing away. However, advances in cardiac and respiratory care are leading to better life expectancy. This will lead to an increased demand for services, particularly personal assistant services. As he gets older, every boy with Duchenne muscular dystrophy will require a personal assistant. As of now, however, we are not seeing an increase in numbers because the boys affected are still not surviving.

Ms Kate Power

There was a question about youth services. We divide youth workers' activities into educational, recreational and sport. It is a social and personal development programme. The services provided depend on the requirements of the family in question. When a new diagnosis is made, needs may not be as great and it is more a question of the youth worker getting to know the young member and his or her parents and siblings. The services provided also vary according to the region in which the member is located. In the north east and Dublin, for example, there are a lot of male members, while in the midlands there is a significant number of young female members.

The youth workers will make home visits, thus allowing parents a break from their caring duties. Some parents use this time to go for a walk or to spend time with other children who may not receive as much attention because of the demands of caring for the child with muscular dystrophy. Activities can include anything the young member wants to do, from homework to computer activities, baking and so on. The educational aspects involve linking in with schools in regard to such activities as school tours and computer training. We also try to link in with organisations providing youth services such as the Irish Wheelchair Association, Foróige and various local groups.

Access is often a significant issue. We have some young members who are part of the local drama club. One young member has sufficient mobility to be able to partake of ice skating and horse-riding. These are exceptions, however, and for the majority of members, transport becomes a major issue.

Even though they are defined as youth workers, they do not stop helping our young members once they reach 18 years of age. Many youth workers continue to provide a service for young adult members, linking in with the colleges. We are becoming increasingly aware of the need for adult services. Adult members are finding that once they leave school or college, access to employment or further educational opportunities is difficult, even though such services are supposed to be in place. Many of our older members find they are quite isolated. We are using youth workers, linking with family support workers to develop adult activities as well. We are trying to ensure that our adult members are part of our society, as much as possible.

Special needs assistants are available, although access is not easy. Many of our members end up sharing special needs assistants. It may be with a child with a different disability altogether, so there is the whole aspect of training special needs assistants to deal with a different type of disability.

Disability awareness is a major issue as well, just with regard to how people with disabilities are treated and spoken to.

Deputy Kathleen Lynch

I apologise for having to leave the meeting. I hope the members of the delegation did not think I was not interested. I had explained to the Chair that I had to go somewhere at 3.40 p.m. I did not want to interrupt the meeting.

Vice Chairman

I thank the representatives of Muscular Dystrophy Ireland. The committee will follow up the delegation's recommendations and highlight the issues it has raised. I understand the frustration expressed by Mr. Mooney, in particular, about the lack of meaningful response to the issues raised. The committee will do everything it can to pursue these matters with the HSE and the Minister.

Mr. Joe Mooney

I thank the committee for allowing us to attend this meeting. We highlighted similar issues when we made a presentation at this committee two years ago. We were told we would get a report within three months. Can the committee confirm that we will receive a report within three months on this occasion?

Vice Chairman

If the committee agrees to the suggestion that it should produce a report within three months——

Deputy Kathleen Lynch

Is Mr. Mooney talking about the minutes of this meeting or about a response?

Mr. Joe Mooney

We were told two years ago, when Deputy John Moloney was the Chairman of the joint committee, that the committee would get back to us with a report, including recommendations, within three months. We have not received anything like that.

Deputy Kathleen Lynch

We will discuss that.

Deputy Bobby Aylward

All we can do is make recommendations to the HSE and the Minister, wait for a response and then compile a report.

Vice Chairman

Many of us were not on the committee at the time.

Mr. Joe Mooney

I appreciate that.

Vice Chairman

We will ensure that we follow up on today's meeting.

Mr. Joe Mooney

We want to be sure what will happen next.

Senator Phil Prendergast

It should be pointed out that questions asked of the Minister are often referred to the HSE. That process can take longer than any of us would like. We might not be able to respond within what we would be considered to be a reasonable timeframe.

Vice Chairman

We should give a commitment to summarise the various issues raised. We will bring them forward. We will give the organisation a copy of our recommendations. We will bring whatever response we receive to the attention of the organisation.

Deputy Margaret Conlon

We should discuss this matter in private session at one of our forthcoming meetings. We can make recommendations and wait for a response.

Deputy Charlie O’Connor

It is important that those who attend our meetings should feel not only that we have listened to them and taken account of what they have said, but also that we will try to take action on foot of their remarks. That is fair enough.

Vice Chairman

That is the view of the committee. I thank Muscular Dystrophy Ireland once more.

Ms Kate Power

We were asked about community services, such as physiotherapy and occupational therapy. Such services are not available. I know there is no embargo, but there are difficulties our members find difficult to understand. The parents of one of our members, in Limerick, have been waiting three months for splints for their child. The person in question will have outgrown the splints by the time he gets them.

Vice Chairman

We will ensure that such matters are included in our report.

Sitting suspended at 4.24 p.m. and resumed at 4.27 p.m.