Jerry Buttimer (Cork South Central, Fine Gael)
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I remind members and those in the Visitors Gallery to ensure that their mobile telephones are switched off for the duration of the meeting as they interfere with the broadcasting equipment, even when on silent mode. They also cause a disturbance to members of staff and it would be unfair to them to have their hearing affected in any way.

We will deal with a number of issues this morning. We are joined by representatives from Fibromyalgia Sufferers of Ireland and Spina Bifida Hydrocephalus Ireland. I welcome to our meeting Ms Ann Mooney, Mr. John Maher, Ms Jude Bromley, Ms Edel Browne, Mr. George Kennedy and Ms Hazel McGeogh.

Before we commence the meeting I remind the witnesses that they are protected by absolute privilege in respect of the evidence they are to give this committee. However, if a witness is directed by the committee to cease giving evidence in relation to a particular matter and the witness continues to so do, the witness is entitled thereafter only to a qualified privilege in respect of his or her evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and witnesses are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person or persons or entity by name or in such a way as to make him, her or it identifiable.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable. I ask Mr. John Maher, who is from Carlow, to make his opening remarks.

Mr. John Maher:

I thank the Chairman and the members for giving us the opportunity to speak with them about our lifelong crippling condition. I have come here today to speak on behalf of everyone in Ireland suffering from fibromyalgia about the challenges we face on a daily basis. As members will see from our submission which was sent to the committee, fibromyalgia does not consist only of chronic pain, chronic fatigue and memory loss; it is composed of many other symptoms.

The number of support groups in Ireland is on the increase to cater for those who have nowhere to turn. With these support groups comes a place of understanding where everyone knows exactly how the other is feeling. No one stands apart. Members may check our website, , which will give a list of support groups in Ireland.

There are no demographic data on the disease in Ireland as diagnosis takes a very long time. Sufferers are usually told, after a host of tests, that they are suffering from depression. This is not the case with fibromyalgia. We may have a very low mood but this is due to the constant battle to have our voices heard and the battle with the medical system, which does not understand what fibromyalgia is or how to diagnose it.

Unfortunately, most drugs do nothing to alleviate the pain, but the side effects are very alarming. There are three main drugs used for fibromyalgia in Ireland: Lyrica, Cymbalta and amitriptyline. Lyrica is used in the treatment of epilepsy and the other two are anti-depressants. Weight gain follows the taking of the drugs, as does desperation. The drugs leave the patient feeling drugged and listless, thereby leading to a lack of movement. The sufferer, at that point, stays in bed and hope fades.
It is essential to do moderate exercise, but nothing too strenuous, when one has fibromyalgia. The overuse of muscles can lead to a lot of pain. Constant fatigue is just like a switch that has been unplugged, and rest is the only answer. The majority of sufferers cannot hold down a job. A week in the life of a sufferer can involve pain that can be severe to moderate, but chronic fatigue is unrelenting.
I worked as a barman for 35 years. I had to give up work two years ago and had no choice. I could not understand what was wrong with me, I was so tired. I was very worried as tests were not giving me answers. When I did receive my diagnosis, I still found I was misunderstood both by the medical profession and my family. Friends looked at me implying I was lazy and that the condition was all in my head. This is the usual reaction to fibromyalgia. Sufferers may look well but we are dying inside. My story echoes time and again among sufferers. Our dignity has been taken, as has our sense of being useful. Inevitably, we try to retreat from the world.
I sought a support group and joined. It was a new beginning as I received understanding and some tips on how to live from day to day. All fibromyalgia sufferers' groups are self-funded and there is no Government backing. At the groups, people help one another and speak openly about their condition without misunderstanding.
I turned to the Department of Social Protection for assistance. For the first two years, I received illness benefits and was then told they would finish in July 2012. I applied for invalidity benefit and was told I was not entitled to it. The decisions have been made solely on the basis of paperwork. No one from the Department of Social Protection examined me and my letters from doctors and rheumatologists were ignored. I asked that my case be reviewed and was told I would have to supply more supporting medical evidence, which I duly did. To date, nobody has contacted me and I am still awaiting an answer. This is the case for most people suffering from fibromyalgia. Our doctors or rheumatologists almost dismiss us and in many cases have no idea how to treat us.
While this matter may not be directly associated with the work of the committee, members should note the impact on health is very damaging. The stress of having no money, not getting answers and having to go to one's local community officer to beg for money leads to more stress and nerves. If fibromyalgia were listed as a long-term illness, surely the process would be made so much easier for us.
There are various ways in which one can manage fibromyalgia to make life tolerable. These include relaxation, yoga and collective behaviour therapy, but these cost huge sums. Therefore, none of these can be availed of. The stress of being pushed from hospital to hospital and of being prescribed endless drugs as opposed to early diagnosis and the use of relaxation technology and self-management must be borne in mind. With the latter approach, there would be a significantly reduced cost to the State owing to lower costs related to doctors, consultants and drugs.
We are no different from anybody else with a disability except that we look well. We are totally misunderstood and there is no continuity in the medical profession regarding the treatment or understanding of fibromyalgia. We are not born with the disease, unlike some others, who know no other way of life. The diagnosis can come at any age. One's life must be readjusted and it is very difficult to keep going.
Let me draw members' attention to the entry on the HSE's website. It appeared only in February 2012 and was updated in August. It states:

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. ... There is currently no cure for fibromyalgia, because the cause is unknown.

If the Minister for Health took the time to meet us to hear our stories and added fibromyalgia to the list of long-term illnesses, we could strike a balance whereby money could be saved and life could be made easier for us. Two young women took their lives recently because of this; this must not be allowed to happen again.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Mr. Maher for his very moving testimony and presentation. Members met the delegates in the audiovisual room previously. I acknowledge the presence of Deputy Pat Deering, who was at the meeting on the morning in question.

I now call Mr. George Kennedy of Spina Bifida Hydrocephalus Ireland.

Mr. George Kennedy:

I am the CEO of Spina Bifida Hydrocephalus Ireland. I am accompanied by Ms Edel Brown, manager of the family support worker side of our organisation, and Ms Hazel McGeough, a family support worker in the Louth-Meath, Cavan-Monaghan and north Dublin areas. Behind me is the parent of a child with hydrocephalous. His name is Mr. Peter Landy.

Jerry Buttimer (Cork South Central, Fine Gael)
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Perhaps Mr. Landy would like to join us at the front rather than hiding at the back.

Mr. George Kennedy:

We appreciate that. Peter is a volunteer in our organisation and also its vice president. The ethos of our organisation, which has been in existence since 1968, is volunteer based. Today we are seeking the committee's help in putting pressure on decision-makers who made to our members and various organisations specific promises that have not been honoured.

The rate of spina bifida and hydrocephalus in Ireland per capitais one of the highest in the world. One in 80 children born in this country each year has the condition spina bifida and 80% of such children also have hydrocephalus. Having mentioned the words, "spina bifida", Ms Hazel McGeough will go through what is the condition, will define it and will outline to the joint committee some of the difficulties our members suffer.

Ms Hazel McGeough:

Spina bifida literally means a split spine. As it can occur anywhere on a spine, it can affect any part of the body. The majority of our members are paralysed from the waist down and as their leg movement is highly limited, they therefore are wheelchair users. There also are other complications, such as bowel and bladder incontinence, skin conditions and scoliosis. As Mr. Kennedy mentioned, it is a lifelong condition as one is born with it, one lives with it and one dies with it. As a family support worker, I work on the ground with families and siblings of people with these conditions. We devote our time to advising and supporting them in every way we possibly can. For example, I work with a young man living in the Louth area, whose name is James and who is 32. He was born with spina bifida and hydrocephalus and is a full-time wheelchair user. James is like you or me, in that he has wishes and dreams to do things and to carry out different tasks in his life. While he lives at home at present, just as would you or I he aspires to moving out of home and living independently, to drive, to go to college and to meet someone special. Basically, the reason we have appeared before the joint committee today is to ask for members' help to help those like James.

Mr. George Kennedy:

There is no better person to talk about the condition of hydrocephalus than the parent of a child with the condition. I now invite Mr. Peter Landy to define what is hydrocephalus and to share some of his experiences.

Mr. Peter Landy:

I thank the joint committee for this opportunity to speak before it. Hydrocephalus literally means water on the brain. It is a condition in which water is retained in the brain and, as it cannot escape, it therefore puts pressure on the brain and cause some brain damage. Although it can be treated with the insertion of a shunt, unfortunately quite an amount of damage already can have been done by the time it is diagnosed. If members will give me the opportunity, I wish to tell them my story and that of my daughter, Hannah. She is 14 years of age and was born in 1998 with hydrocephalus but thankfully not with spina bifida. She had what is called a Dandy-Walker cyst, which is a cyst at the base of the brain that blocked the fluid from getting out, which was the problem. Three days after birth, she had a shunt inserted in Crumlin hospital, as it was necessary to do it very quickly. She lived with her shunt quite successfully for ten years without great problems or major issues. I joined the organisation at some time during the interim and became more aware of, and got more information on, the condition of hydrocephalus.

However, one day in 2008, Hannah became ill. She was not feeling well, as often is the case with children, and we did not panic too much. However, at about noon that day we decided she was not getting any better and that it would be best to bring her to our local accident and emergency unit. On presenting there, luckily the staff there reacted quickly and sent her for a scan, at which it was established there was a blockage in the shunt and the fluid was building inside her head. Within four hours of having arrived at our local accident and emergency unit, my daughter was transferred to Crumlin hospital and by 4 p.m., we were in an emergency operation situation there. It was necessary to bring in the crash team because Hannah literally had left us. Luckily, she returned to us and was rushed into theatre where she was operated on. In a procedure that took approximately two and a half hours, the operating team righted the problem and got the shunt to work again. Unfortunately, more damage had been done by then and Hannah suffered paralysis on her left side. If members are familiar with anyone who has suffered a stroke, the effect was very similar to that. She had paralysis on her left side, her left hand and left leg became very weak and all that went with that.

This experience was a major trauma for us. It took approximately four days before she came out of the anaesthetic and we literally were traumatised by the entire event. She remained in Crumlin hospital for approximately seven weeks, where ultimately she was undergoing occupational therapy and physiotherapy services, as well as availing of all sorts of other hospital services. As the hospital had done all it could for her by then, the only thing to do was to move her out to the National Rehabilitation Hospital in Dún Laoghaire, where she spent a further eight weeks in rehabilitation. This happened on 8 August and we eventually got her home on 23 December 2008. Hannah has had further issues since then. In 2010, she experienced another blockage and she ended up in Beaumont Hospital, where that was relieved. Thankfully, Hannah is doing well. She is attending a special school, is learning, and is doing all the things. It is like Ms Hazel McGeough's comment about her client in that she has all the aspirations to be a model and to be everything little girls want to be when she grows up. Please God, perhaps someday she will achieve that goal.

As a family, we could not have survived without the support we received from Spinal Bifida Hydrocephalus Ireland, SBHI. I have become much more involved in SBHI in the intervening years and as Mr. George Kennedy already has noted, I now am proud to be vice chairman of the national organisation. That is my story and that is what hydrocephalus can do. It literally is a life and death situation. When the doctor emerged from the operation that night in Crumlin, he told us the surgical team had saved Hannah by a hair's breadth. That brings it home to one how close one can be. When I left my house this morning, my daughter was fine but by this evening, the whole situation could change. I again thank members were listening and hand them back to Mr. George Kennedy.

Mr. George Kennedy:

I thank Mr. Landy. I will provide members with a brief history of our organisation, which has been in existence since 1968 and is not just a recent innovation. We have branches throughout the country and service 26,000 square miles of land area with seven family support workers. We have a brief that covers matters such as education, medical issues and schools. We advise our members on a constant basis and probably have 4,000 primary members who have either or both of these conditions. Not alone do we work with our members directly but we also work with their siblings, the direct family and perhaps even grandmothers and grandfathers and our total staff comprises 17 people. I reiterate that Ireland has the highest rate of spina bifida and hydrocephalus in the world.

The organisation has four main requirements. First, we seek a consultant paediatric urologist and in a few minutes, Ms Edel Browne will go through the history of the broken promises in respect of this particular service, which is an absolute necessity for our young children. Our second priority is to seek the possible appointment of a research nurse to work in Temple Street hospital. In addition, we seek the provision of a defined clinic for adults who have the condition. Finally, two areas of the country badly need family support. For instance, we have no family support in place in counties Galway, Sligo or Donegal. In these three areas, there are approximately 200 primary people who have the condition but who do not have our support. At present, we have a family support worker in place on a temporary basis in the Cork-Kerry region. However, members should be advised there is a possibility that this service will be withdrawn on 31 December. I note this service is at present operating at a cost to the State of less than €50,000. To explain a little more clearly our main requirement, namely, the consultant paediatric urologist, I invite Ms Edel Browne to go through the needs and the situation that pertain at present.

Ms Edel Browne:

The main point on our list of objectives that we want to discuss with the committee is the immediate need for a consultant paediatric urologist. As it stands now, children with spina bifida are not receiving any urological review by a consultant urologist in Temple Street. Since 2009, approximately 300 babies have been born with a neural tube defect, including children with spina bifida. Prior to 2009, children born with spina bifida were transferred to Crumlin. Since 2009, however, all children with neural tube defects have been attending Temple Street. At this point in time, there is a consultant paediatric urologist in Crumlin hospital, but due to the demands and restrictions on him, and the level of children who need urological care, he is no longer able to see any children with spina bifida, apart from extreme situations. He is no longer able to review any children with spina bifida, so our children are not being reviewed or receiving any follow up. As of now, there are 300 babies, toddlers and young children who are receiving absolutely no urological reviews.

Children with spina bifida do have continence issues as a result of their condition. This is a huge issue we have with our children and we want to see an improvement in the quality of their lives. In many cases, children with spina bifida are moving through their younger years but their continence needs are not being examined. They are heading into their school years wearing nappies and pads because no alternative treatment is available to them.

To highlight this issue somewhat better for the committee, I will tell a story about a child with whom I am working at the moment. He is an eight year old boy from Dublin who has been attending Temple Street. He had surgery at birth to operate on the lesion on his spine. He has never been reviewed by a urologist in Ireland, so he was using nappies full-time to address his bladder issues. He went into third class in September. He is fully aware of his continence issues and how they make him stand out from his peers, as one would be aware for an eight year old child. He was using a wash-out procedure in order to irrigate his bowel so his bowels were under control. That is a big social issue for any eight year old if they are to have such accidents. The nappies or pads were being used solely for the bladder.

In March this year, Temple Street had prioritised John for the treatment abroad scheme to travel to St. George's Hospital in London to be reviewed by a urologist. His family were prepared for major bowel and bladder surgery there. The information was given and I supported the family through this transition before travelling abroad for both major invasive surgeries. After travelling abroad in March, he came home after a week following tests, scans and an overview by the urologist in London. A week after he came home, I received a telephone call to say that the urologist had said there was no way John was to be operated on because he was not suitable before less invasive treatments were done first.

To take a step back, the point is that if there had been a urologist in Temple Street, he or she could have undertaken these simple tests and scans here. A simple procedure such as passing a small catheter tube into the bladder to release urine, which is less invasive and easily done, could have been taught here by a specialist nurse. If that could have been done here it would have saved the State a huge amount of money. That was the first case of a child who was sent away under the treatment abroad scheme back in March.

Children with spina bifida are in the high risk category of irreversible kidney damage as a result of the neural rube defect they are born with, which in time can lead to end-stage renal failure and possible death, if not monitored on an ongoing basis. Urology is not an additional option for our children's care, it is a necessary part of the care they need right through life. Kidney failure is a disaster but is predictable and preventable. If their kidneys are adequately monitored, it can be totally prevented. We are aware that an additional urology post has been in the pipeline since 2009 following the transition to Temple Street, but there has been no satisfactory outcome for our children.

I attended the meetings along with Mr. George Kennedy at the HSE since the transition to Temple Street. The funding has been prioritised but the post has not been filled. The story has been the same since 2009. The promises are there but we are anxious as a national organisation to see this progression for our members. We are working alongside our parents and are doing as much as we can. We really want to see a positive move towards appointing a urologist to provide the important care our children need and deserve. We do not want to see children who are born now, ending up with end-stage renal failure in a couple of years' time because there is no monitoring for them. Given the level of care that children got ten years ago in Crumlin Hospital, we have taken a step backwards when it comes to urological care for children with spina bifida. It is extremely difficult to watch.

Mr. George Kennedy:

On the chronological side of that particular case, we were told on 30 March 2009 that this position was in the pipeline.

Jerry Buttimer (Cork South Central, Fine Gael)
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Told by whom?

Mr. George Kennedy:

Told by the HSE. We worked with the HSE on this particular aspect. This phenomenon is happening, with one in 80 children being born with these conditions. Our organisation is working flat out trying to service our members. At our Ballinasloe conference in May 2009 one of the HSE representatives addressed 200 of our members who have issues with this problem. The HSE representative promised that this urologist would be in place in the immediate future. This time last year, we wrote to the HSE's representatives. We met them on 29 February this year and were guaranteed that the finance had been laid aside. To date, nothing has happened. It has caused huge issues for our organisation and its members. I ask the committee to help us in this area. We are a proactive organisation. There are 18 of us but we have some of the finest volunteers throughout the country. We are working as diligently and hard as we possibly can, but we need the committee's help now.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank the witnesses for their presentations. It would be appropriate for this committee to write to the HSE to seek an update following Mr. Kennedy's presentation. Is that agreed? Agreed.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I have met with representatives of both organisations - Fibromyalgia Suffers of Ireland and Spina Bifida Hydrocephalus Ireland. The outline of the circumstances that present to those they are supporting is very distressing. I want to thank most sincerely all of those who have attended the committee, including those who spoke. They have given powerful testimony on the conditions both of fibromyalgia and spina bifida hydrocephalus.

I concur with the Chairman that it is not enough for us as a committee just to take note of the respective submissions and testimonies made here today. I strongly urge that we not only engage with the HSE but also copy the letter to the Minister, and include at least some of the key recommendations that both organisations have sought.

I wish to ask a few brief questions of both organisations. The testimonies have been powerful and they stand on their own merit but I wish to extrapolate some additional information if it is available, although it may not be.

I welcome Mr. John Maher back to the Oireachtas. His contribution was deeply moving and he is to be highly commended on his courage in appearing before the committee, particularly when 87% of fibromyalgia sufferers are women and only 13% are men. Is there any reason for this disproportionate ratio? While the cause of fibromyalgia has not been identified, is there a reason that a significantly greater number of women are impacted by this condition? The condition has been noted to occur in genetically pre-disposed individuals and can be seen in several family members. While I do not want to cause any upset, has the delegation noted multiple instances of this condition in families?

The point was made that fibromyalgia sufferers have to make more general practitioner, GP, visits as well as specialist and inpatient visits before a diagnosis can be made. Is the diagnosis rate improving? Is there better awareness of the syndrome among GPs? What steps are being taken to ensure health care professionals are more aware of this syndrome? Is the IMO, Irish Medical Organisation, involved in informing the medical profession of the symptoms which would lead to more speedy diagnosis?

The delegation made the point there are no supports available to sufferers. What supports could be introduced which would best benefit sufferers? I note the delegation highlighted more easy access to disability payments, medical cards, etc. Are there other areas which the delegation believes would be of real and practical help and support?

On the point made by Spina Bifida Hydrocephalus Ireland about the appointment of a paediatric consultant urologist, we do not want to wait until we have a new national paediatric hospital to have such a consultant in place. We want increased service provision and greater specialist front-line services today in the Temple Street hospital. Has Spina Bifida Hydrocephalus Ireland any indication of whether a paediatric consultant urologist will be appointed? Having a designated nursing post at Temple Street would address people presenting with these conditions as well as addressing research.

With all respect to the authors of the research report, the idea of women planning to become pregnant in a month's time is a wee bit silly. I am the father of five and we planned none of them. My wife would be the first to offer that information. Would it not be wiser to say women of child-bearing years would be part of the research on folic acid and pregnancy? As a non-medical person, I am assuming there are no downsides to folic acid levels intake. Would it be of help to show that the percentage of children born with spina bifida was significantly reduced in a particular cohort of women who took folic acid?

Is there any particular reason that a family support worker service is not provided for the large population areas of Donegal, Cork and Kerry?

Colm Burke (Fine Gael)
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At a previous committee meeting, I inquired about vacancies in consultant posts. On 1 January 2011, there were 141 paediatric consultants but by 30 September 2012 there were 147, meaning six new appointments were made. How did a consultant in the area of fibromyalgia and spina bifida slip through the appointment process when it was promised back in 2009? Maybe some clarification should be sought from the Health Service Executive as to why this arose? There have been quite a number of consultant posts advertised for which there have been no applicants. Have the delegations received any indication that there are suitable candidates within the Irish system or in the UK if the post were advertised? As this is a very specialised area, there may be a problem filling the post. Is there any existing paediatrician who could be assigned to deal with this area?

Robert Dowds (Dublin Mid West, Labour)
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I welcome the delegations to today's meeting. I must admit I was ignorant of the fibromyalgia condition, so I appreciated the presentation on it. The committee should inquire as to why this condition has not been put on the long-term illness list.

Jerry Buttimer (Cork South Central, Fine Gael)
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There is a Bill being prepared regarding that. We will make a recommendation from today's meeting, if members agree, that we would ask that it would be considered that this condition be put on the long-term illness list. Is that agreed? Agreed.

Robert Dowds (Dublin Mid West, Labour)
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The other question I would have is this. To what extent is there medical research which would help to uncover the mystery of the condition?

As Mr. Kennedy will be aware, I am much more familiar with spina bifida. I worked right beside Spina Bifida Hydrocephalus Ireland's headquarters. I taught several children with spina bifida, two of whom, sadly, died from the condition while I was teaching them. I would be more familiar with his situation.

It was useful to hear Ms Browne's practical input. It demonstrates to us the difficulties of those who suffer from spina bifida and hyrdocephalus. I was conscious of teenagers who suffered from continence problems and their embarrassment in that regard. Her comments, between that and the comment on the need for that urologist, were powerfully made.

I ask her to quickly run through something. There were three other main points and I missed one of them. Was it another one or two support workers that are sought? I understood it to be one but maybe it is two. Am I correct that there was something about a specialist nurse in Temple Street? There also was one point that I missed. I would appreciate it if they could go through them. The groups made a powerful presentation and I hope that we can make progress, particularly on the urologist, as soon as possible.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will take the other two speakers now, Senator Landy and Deputy Deering.

Denis Landy (Labour)
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I, too, welcome the two groups here this morning. I am not a member of this committee but I thank the Chairman for allowing me participate. I did not think that I would meet a namesake, Mr. Peter Landy. There are not too many of us around and I welcome him. We will have coffee later and see whether we are related.

Mr. Peter Landy:

I thank Senator Landy.

Denis Landy (Labour)
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First, I want to speak on spina bifida. The association's requests are well justified and I hope that the committee can further pursue the issues, particularly the filling of the post. I have a particular and special interest in fibromyalgia and that is why I am here today. If truth be known, I could probably answer all of the questions that have been asked but I will not do so - that is why the group is here. However, I want to make a number of points.

The issue of early intervention is something that needs the attention of the Department. As Mr. Maher correctly pointed out, people are sent from pillar to post, in some cases for up to three or four years, before they are diagnosed. That has serious consequences and creates difficulties for sufferers, both in the physical and mental state. By the time they are diagnosed, they are very far down the road and recovery is much more difficult. As part of what the association is doing in requesting for this to be listed as a long-term illness with the Department, it should also request resources for early diagnosis.

General practitioners, unfortunately, as is the case with every patient who presents himself or herself to a general practitioner's clinic, have probably five to ten minutes to give to him or her, and this illness cannot be diagnosed in five to ten minutes. It takes a long time to diagnose it. It takes a person to be sent in the right direction. There are some excellent rheumatologists in this country who can diagnose fibromyalgia.

There is an argument, which has been put up by the HSE and the Department of Social Protection, that people are using this as a way of going on to long-term illness. There is a specific diagnosis for this illness. It can be diagnosed quickly by the correct person. We need to ensure that such is put in place for everybody who presents with the symptoms to his or her general practitioner.

While I commend the spina bifida organisation on its ability to organise at national level and to get recognition, this organisation, Fibromyalgia Sufferers of Ireland, FSI, is embryonic. FSI has not yet got official recognition. It needs to get official recognition and it needs official supports. These people are trying to do it off their own bat. I welcome that the committee has agreed to write to the relevant Minister and the Department for this to be officially recognised as a long-term illness, but I would also call for the supports that are necessary. Those members of the delegation and the wider group cannot continue to provide these supports on a voluntary basis. They need official supports.

The other point I would make relates to early intervention. It is essential for sufferers to be diagnosed early on and for the resources to be put into that because in the longer term, it will save the State a great deal of money. If somebody is diagnosed early, he or she can live with this and continue to play a role in society in terms of the workplace. If he or she is not, unfortunately, as Mr. Maher outlined, there are consequences.

I thank Mr. Maher, Ms Bromley and the others who have come here today, and, indeed, those from Spina Bifida Hydrocephalus Ireland. I hope to meet my namesake, Mr. Peter Landy, for coffee later.

Pat Deering (Carlow-Kilkenny, Fine Gael)
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Like Senator Landy, I am not a member of the committee and I thank the Chairman for giving me an opportunity to speak at the committee today. I thank the committee for inviting both groups, in particular the fibromyalgia group with which I have been involved directly in my area in Carlow for almost a year.

Approximately a year ago, I first became involved with the group. Prior to that, I would have been, like Deputy Dowds, very ignorant of what fibromyalgia was. I was shocked and horrified, to be quite honest, to discover the number of people who are sufferers of fibromyalgia in the small area of Carlow. There could be up to 100 persons of whom I became aware in that time. The consequences of their issues, which have been well outlined by Mr. Maher and, more recently, Senator Landy, are striking.

I have a couple of points to make. There is the cost of drugs. As Deputy Ó Caoláin mentioned, there is the cost of all involved and the diagnosis. There is a direct link between the two. When one goes for a diagnosis and one is unaware of what is the problem, straightaway the patient is put on some kind of medication that may not be necessary, and that involves a substantial cost to the State. That is continually progressed all along without getting a definite diagnosis of what is the position. Apparently, medication is not required in most cases. I would concur with previous speakers, that there must be a process in which early intervention is essential, and in getting appropriate diagnosis to eliminate the medication that is not required.

Have the groups any idea of the number of sufferers in the country? The point has been made that the gender breakdown is 87% women, 13% men. Have they any idea of the overall figure?

I thank the committee for inviting the two groups, in particular,the fibromyalgia group. This is an important step for them along the way. They definitely deserve official support and recognition which they have not received to date. They make a strong case. I commend them on their presentations.

Jerry Buttimer (Cork South Central, Fine Gael)
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I encourage Ms Ann Mooney and Ms Jude Bromley to participate in the replies if they wish. We will begin with Mr. Maher who can choreograph the answers.

Mr. John Maher:

We will try to deal with the questions between the three of us. I will take the first question from Deputy Ó Caoláin.

We are unaware why more women than men suffer from this. Research from the United States shows that there is something to do with the brain MRIs. This work is ongoing. As for here, there is no research. The other main reason - I can speak for myself as a man - is that, as the committee will be aware, a man will not go to the doctor. A man will not talk about his problems. That is why the numbers are so low. There are three men in Carlow who are members of the group. I do not suppose there are many more across the country who will come forward and state that they are sick.

Jerry Buttimer (Cork South Central, Fine Gael)
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In that regard, I commend Mr. Maher on his courage and bravery in doing that and hope that he will be a catalyst for other men to come forward and to be active participants in the group.

Robert Dowds (Dublin Mid West, Labour)
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In that regard it is deplorable nobody from the press is attending the meeting. When we discuss the difficult issue of abortion in January the Visitors Gallery will be full but the issues we are discussing today are as important.

Jerry Buttimer (Cork South Central, Fine Gael)
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The committee issued a press release on our hearings. I commend Mr. Maher on his efforts.

Mr. John Maher:

I thank the Chair and ask Ms Bromley to answer the next question.

Ms Jude Bromley:

We were asked whether other members of the group have relatives with fibromyalgia. The mother and sister of one lady in my group in Donegal have fibromyalgia, as does the cousin of another lady. The latter lady is from Donegal and her cousin lives in Australia. The research is ongoing but it is suspected that the syndrome is always present but needs a trigger to develop. We do not know how that ties in with genetics but I can see from our groups there is definitely a link.

Jerry Buttimer (Cork South Central, Fine Gael)
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How many people in the country suffer from the syndrome? The witnesses suggested a figure of 1.4 million people worldwide.

Ms Jude Bromley:

It is estimated that between 2% and 4% of the population in America and the UK have fibromyalgia but because we are not recognised here there are no official figures. We only know how many are in our support groups. The group in Donegal, for example, has between 120 and 130 members and at least another 40 do not attend meetings because they are not well enough to do so.

Mr. John Maher:

It is the same in most groups. Our meetings probably attract 20 people at a time but 160 members are registered with our group.

Ms Ann Mooney:

On the question of whether GPs and the medical profession generally are more aware, the first port of call is the GP but if one presents with a variety of symptoms it is difficult to pinpoint a specific disorder. Of necessity, one must make several visits before a diagnosis can be made. We have described fibromyalgia as a neurological problem that comes from over sensitisation of the muscles and extremities. Technically, therefore, we should be seen by a neurologist as opposed to a rheumatologist. All of us are aware of the pressures under which the limited number of neurologists in this country must work. People with fibromyalgia need to be very lucky to have a GP with knowledge and awareness of the disorder to be referred to a rheumatologist who can make the official diagnosis.

There is no cure for the syndrome, which involves a series of varying symptoms and ailments, but drug medication should not be condemned because it is very effective for many people. An individual may get involved in a fibromyalgia group when he or she is in a bad way and after gradually getting better may no longer feel the need to attend meetings. In terms of support, however, one needs a physiotherapist who has specialist training. If one has the money, it is technically cheaper to seek out reflexology, cognitive behaviour therapy or even just massage. The peer support offered through support groups is also important. I do not know how we can get this across to the IMO apart from relying on our GPs and specialist consultants.

Mr. John Maher:

Deputy Ó Caoláin asked what needs to be put in place. The seven recommendations we set out in the brief we published in July include the following: Irish GPs need to be educated; psychology support must be put in place; better support is required from the Department of Social Protection; and fibromyalgia should be on the long-term illness scheme.

Jerry Buttimer (Cork South Central, Fine Gael)
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Has the group made a submission to the Department on that?

Mr. John Maher:

This is where we are now, as the fellow says.

Jerry Buttimer (Cork South Central, Fine Gael)
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It has not written formally to the Department of Social Protection or engaged with the HSE or Department of Health.

Mr. John Maher:

This is our first engagement. Other recommendations include classification of fibromyalgia as a disability so that we can apply for invalidity or disability pensions where needed; and the chronic disease policy, which was implemented in European Parliament in 2008, should be put on the Statute Book. We need to put these recommendations in place so that we can get support and have fibromyalgia recognised.

Pat Deering (Carlow-Kilkenny, Fine Gael)
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How do we compare with our neighbours in England in regard to the treatment of fibromyalgia? Is the syndrome recognised in England and what kind of treatments are provided?

Mr. John Maher:

It is far ahead of Ireland in that regard. One can see that by comparing the English website to the Irish one.

Pat Deering (Carlow-Kilkenny, Fine Gael)
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Is it recognised?

Mr. John Maher:

It is recognised by the Government over there. The list of supports is provided on the website. In Ireland one has to look for information from the Northern Ireland support group, which should not be necessary because several support groups have been established throughout Ireland. They are not even mentioned on the HSE website. If somebody in Ireland gets fibromyalgia, he or she will visit the website and contact a Northern Ireland address. Why is that the case when we have several support groups? That has to be changed. The website needs to be brought up to date and the research should be carried out. All the HSE needs to do is contact one of the groups and we will give it all the information it needs. The information set out on the website is not correct.

Robert Dowds (Dublin Mid West, Labour)
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Perhaps we should send a communication to the HSE to that effect.

Jerry Buttimer (Cork South Central, Fine Gael)
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Yes.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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Before we bring in our friends from Spina Bifida Hydrocephalus Ireland, I suggest that we send separate communications to the HSE and the Minister for Health. These issues are not to be confused. We should echo the seven points which Mr. Maher has outlined. In regard to Ms Mooney's response, the IMO appears before this committee regularly. It can play an important role in this regard. I do not wish to burden the clerk to the committee but we should also write to the IMO to urge it to proactively highlight the symptoms of fibromyalgia and the need for greater awareness. By doing this it will be able to reach the GP network quickly. As Deputy Dowds has noted, we can hardly depend on the media, although I hope they are following our discussion on their monitors. I hope they are as moved as we have been by what we have heard.

Ms Jude Bromley:

Senator Landy expressed a special interest in fibromyalgia. I appreciate his admission because many people refrain from mentioning it. Early diagnosis is vital.

As Ms Mooney pointed out, rheumatologists are our main port of call but, unfortunately, the likes of Donegal does not have one anymore. At least 120 people in Donegal have fibromyalgia and they have to make regular trips to the rheumatologists in Manorhamilton, Galway and Dublin. The closest is two hours away. The return of a rheumatologist's clinic to Letterkenny has been promised but that still has not happened. We need it back. It is not satisfactory, unfortunately.

Reference was made to GPs. I am lucky to be on the Donegal community health forum for the Finn Valley area and I have made representations to the primary care teams on a few occasions but, unfortunately, the doctors either do not attend or are not interested. Our representations are still falling on deaf ears.

Jerry Buttimer (Cork South Central, Fine Gael)
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Hopefully, the community teams will help to change that.

Mr. John Maher:

We need to get this disease put on the long-term illness list.

Jerry Buttimer (Cork South Central, Fine Gael)
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That it is important but it is also important that the organisation also communicates with the Department about that. We can discuss that afterwards.

Mr. George Kennedy:

There were several questions and I will do my best to go through them. The first question dealt with family support workers. Currently, we have a service level agreement in the west which covers counties Mayo, Roscommon and Leitrim. This leaves counties Galway, Sligo and Donegal out of the equation. We have three options. The best option is a service level agreement for the counties outside the current agreement. We would consider a grant agreement with the HSE for a defined period where we could have somebody working there. Currently, the woman who looks after the three counties I mentioned does her best to service the counties outside the agreement. The agreement only gives us the lady's basic salary. We have to come up with everything else ourselves, including the travel and subsistence allowance. Even if her subsistence was covered, it would be something. It is undesirable but it is a better alternative than for us to fund raise to have subsistence covered.

We have a grant agreement with the HSE for counties Cork and Kerry.

Jerry Buttimer (Cork South Central, Fine Gael)
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As opposed to a service level agreement.

Mr. George Kennedy:

Yes, and that will expire on 31 December. Over the past two years, tremendous work has been done for many people who have the condition and their families in that area but that will come to an end because, with the cutbacks, we do not have the funds to service the area any longer.

Jerry Buttimer (Cork South Central, Fine Gael)
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Is the funding primarily provided by the HSE or is it part funded by SBHI?

Mr. George Kennedy:

It is part funded by us. We get the salary but we have to look after that subsistence, travel and so on for the person involved. We have to provide office space, filing cabinets, heat, light, etc.

Jerry Buttimer (Cork South Central, Fine Gael)
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Has the HSE intimated what it intends to do in this area?

Mr. George Kennedy:

We have met officials and they will make their decision as soon as possible.

Jerry Buttimer (Cork South Central, Fine Gael)
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Who did Mr. Kennedy meet?

Mr. George Kennedy:

We met Joe Morrissey in his office in Mallow and we are working closely with him. He has received all our reports, the progress to date and so on. The family support service is being provided. A list of the duties is provided in the submission. I do not want to go through them again but we are working with upwards of 150 families in that area at the moment. They will lose that service if we cannot continue to provide it.

Deputy Ó Caoláin asked a question about folic acid. Many studies outside the country prove that folic acid plays a good part in "prevention" but they are not conclusive. We cannot say there is a 100% cure if a woman takes the required dosage of folic acid prior to pregnancy. The Deputy is right that most pregnancies in the country are unplanned. Our recommendation is somebody who reaches child bearing age should immediately take the required dosage of folic acid. As an organisation, we would very much like to organise an educational programme but, unfortunately, funding is not there to do it.

Ms Edel Browne:

We all absorb folic acid differently, including people who are overweight or have a history of diabetes or neural tube defects in their family. Medication for epilepsy sufferers can counter indicate how they absorb folic acid. There are numerous ways in which the body absorbs folic acid that put women at a higher risk of having a baby with a neural tube defect.

Deputy Ó Caoláin also asked whether we should wait until the new paediatric hospital is in place to instate the consultant urologist. I would say definitely not because that is far down the line. Going on current statistics, on average, one baby is born every week with spina bifida in this country. That is too high a risk to take with these babies. We cannot risk these babies having irreversible kidney damage, and, therefore, we have to be proactive. We are taking a chance with the 300 babies who are there at this stage. Add a baby who will be born this week, next week and the week after and every week for another three or four years before a new hospital is in place. The funding is there; it has been prioritised since 2009. It is sitting there in the HSE and we need to act immediately.

Senator Burke said that six posts were filled this year. We brought that up at our meeting with the HSE on 29 February and he is correct that the reason our post was not filled is becuase it is a specialised post. The HSE was prioritising a person in England who turned down this post.

Colm Burke (Fine Gael)
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However, six new posts were created. Can an existing paediatrician with experience in this area be assigned to take on some of this workload if there is a difficulty filling the specialised post?

Jerry Buttimer (Cork South Central, Fine Gael)
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The organisation was promised that the post would be filled in 2009.

Colm Burke (Fine Gael)
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There are 147 paediatric consultants in the State. Surely one of them has experience in this area. Has this been considered if there is a difficult filling the post?

Ms Edel Browne:

At present there is nobody with the level of experience we require for children with spina bifida. There is only one person with the required level of surgical experience.

Colm Burke (Fine Gael)
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We are in a difficulty.

Mr. George Kennedy:

The consultants in Great Ormond Street Hospital have made an offer to the HSE to come to the country to work with our children on this basis as an interim stopgap measure. That has not been taken up.

Colm Burke (Fine Gael)
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The cross-border directive approved by the EU in 2011 will lead also lead to problems. The Government has 30 months to implement the directive.

If the service is not available here, people will have the right to travel to the UK for treatment. Ideally we should try to resolve the problem now rather than letting it drag on. It has already dragged on for three years.

Mr. George Kennedy:

At the moment some of our children are travelling over to Great Ormond Street Hospital. Some of the children could be over there for lengthy periods of time. The only money they are given is to cover the cost of the treatment in the hospital and the cost of travel. How can people, who may be on the dole or on very limited income, put up with that? That is another major issue we have.

Jerry Buttimer (Cork South Central, Fine Gael)
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The point is well made. We will write to the HSE and the Department as we have said.

Mr. George Kennedy:

In response to Deputy Dowds, the one he missed was the defined clinic for adults. At present there is a relatively structured paediatric system, but once members with the condition reach the age of 18 they are into a very unstructured situation requiring them to visit several consultants. They might need to visit consultants in Galway, Cork and Dublin for various different aspects. It is not structured and our members are finding it very difficult.

Robert Dowds (Dublin Mid West, Labour)
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Mr. Kennedy is suggesting that all the requirements be addressed in one location.

Mr. George Kennedy:

That would be ideal.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I know we are keen to have the consultant neurologist in situ. There is also the issue of the designated nursing post at Temple Street Hospital. Accepting that is the key focus of our submission to the Minister and the Department, has there been any research at home - Mr. Kennedy referred to international research - into the positive impact of folic acid as part of the diet of a particular cohort of women? Extrapolating from the information gathered over a period of time, is it clear from the results that a fewer number of births per thousand are presenting with spina bifida? It would be wonderful if we could be part of the international effort to establish factually the positive impact.

Ms Edel Browne:

I recently spoke to someone in the statistics office in the HSE. It is alarming that since 2009, the numbers of neural tube defects has started to increase, whereas there had been a decrease between 2004-05 and 2007. I know the number of births has also increased in that time. Is it related to folic acid? Research has been carried out in Trinity College and more research involving Temple Street Hospital and Trinity College is commencing, but it is only starting now. It is very hard to carry out a complete folic acid study because it is necessary to take into account the weight of the parent and the family history. Much must be taken into account about how a woman absorbs folic acid. To get a full reading on that it would need to be a very big study. I am not the right person to answer that question.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I noticed Mr. Landy noted my question. In addition to spina bifida, does folic also have application in terms of hydrocephalus? I did not think so.

Mr. Peter Landy:

I do not believe it does. It has more to do with the spina bifida aspect.

Mr. George Kennedy:

We badly need an awareness campaign on the use of folic acid. It may well be that the rise in this condition again may relate to the lack of awareness of folic acid.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will review today's presentation and discuss if there is a role we can play in that regard. I thank Ms Mooney, Mr. Maher, Ms Bromley, Ms Browne, Mr. Kennedy, Ms McGeough and Mr. Landy for appearing before the committee. It has been a very enlightening, challenging and moving experience. I thank them for sharing their stories and more importantly for creating awareness and highlighting the issues. We have a number of action points to take from this morning's meeting. The members of the committee understand this is a key issue for all the witnesses, which is why we called them in. We could fill this committee room for the next two years with other groups who have requested to come in. However, we wanted to give today's witnesses the space to come here to make their presentations.

I acknowledge the work of Deputy Deering, in particular, for his role and also Deputy Ann Ferris. I also acknowledge that Deputy Ó Caoláin has been working in the background. I again thank the witnesses for coming in and ask them to continue to keep in contact with us.

Mr. George Kennedy:

Will the Chairman come back to us?

Jerry Buttimer (Cork South Central, Fine Gael)
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Arising from our meeting this morning we will communicate on the different issues and we will revert back to the witnesses when we get the reply back from them.

Mr. George Kennedy:

I thank the Chairman.

Jerry Buttimer (Cork South Central, Fine Gael)
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If there is a need for a further meeting - even if it is at a sub-committee level - we will consider that.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I ask that the clerk would circulate copies of the letters to the Minister, the HSE and the IMO.

Jerry Buttimer (Cork South Central, Fine Gael)
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The select committee will meet on Tuesday at 6 p.m. The joint committee will meet again next Thursday at 9.30 a.m.