Motor Neurone Disease: Discussion with Irish Motor Neurone Disease Association.

I welcome the delegation from the Irish Motor Neurone Disease Association, Ms Ciara Hudson, Ms Gemma Watts and Ms Marie O'Connor. I draw witnesses' attention to the fact that while members of the committee have absolute privilege, the same privilege does not extend to them. Members are reminded of the long-standing parliamentary practice to the effect that members should not comment on, criticise or make charges against a person outside the House or an official by name in such a way as to make him or her identifiable.

I thank the delegation for attending the meeting. Members have studied the presentation we received from the association. Ms Hudson will provide a synopsis of the presentation and then we will take questions from members. We are under slight time constraints because we have another group coming in. We look forward to having a full and frank exchange on the issues the witnesses wish to raise with us.

Ms Ciara Hudson

I thank the Chairman for allocating time to us today. I will begin by providing a brief overview of motor neurone disease and then I will move on to the services that we currently provide. There is no medication or treatment to halt, prevent or cure motor neurone disease. It is recognised as one of the world's rare diseases. In the majority of cases, life expectancy is between three and five years.

The symptoms of motor neurone disease are highly debilitating. What may start as a limp or a foot dragging will progress to deterioration in mobility and eventual complete loss of mobility. What may appear as a stiffness or swelling in the fingers will progress to the full loss of use of hands and arms. In the bulbar region, it affects speech and swallow, robbing the person of his or her ability to speak and resulting in non-invasive ventilation. The majority of our clients live with a combination of limb and bulbar disease.

Currently, 272 people are registered with the Irish Motor Neurone Disease Association. Despite the severity of this diagnosis, sufferers are not automatically entitled to medical card or palliative care services. In an effort to meet the needs of the motor neurone disease community, the Irish Motor Neurone Disease Association has spent the past 25 years developing specialist, individualised services in order to manage the symptoms and improve the quality of life of those affected and their families. The services are unique. They are not duplicate services offered by any other provider.

We employ the only nurse specialist facilitating the entire motor neurone disease community. She works in a remote capacity. She is crucial to delivering the best in care to persons with motor neurone disease and their families. Her work includes but is not limited to specialist care for the persons concerned and their families during home visits. She takes a palliative care approach from the outset, not just during the end stage of the disease. She is responsible for the education of GPs, other health care professionals and community teams that have been trusted with the care of people with motor neurone disease. She offers training and support to families and carers. She is also involved in the co-ordination of brain stem and nerve donation after death, which is used for research into the causes of motor neurone disease. In addition, the remote nature of the Irish Motor Neurone Disease Association nurse's work allows for care and education in the most remote parts of the country where motor neurone disease has appeared. Reaching the most isolated areas of the country has proven invaluable.

Another service we provide is the operation of a loan bank of equipment, technology and controls for those with motor neurone disease. Our members have immediate access to the loan bank. There are no waiting lists, which is crucial given that our clients are not automatically entitled to medical cards and are usually expected to live between three to five years. Equipment and technology are carefully chosen to suit the client and therefore it can be easily reused and recycled within our community.

Furthermore, the Irish Motor Neurone Disease Association is now supporting more than a quarter of its community with financial help via a home help supplement so that members may obtain additional hours of home help. We still hear about people who receive as little as one hour, or slightly more, of home help a week. That level of home help cannot support the extent of disability that motor neurone disease inflicts on a person. Our other provisions include financial support to enable access to counselling, training and development. The association also donates 5% of its annual income towards funding research at Beaumont Clinic. We currently fund the Irish Motor Neurone Disease Association research fellowship.

It is vitally important that the association is recognised for its level of expertise and the enhancement to basic health services that we provide. Our service provision is unique and by no means a duplication of services on offer from the Health Service Executive. Financing these services is always an issue but the Irish Motor Neurone Disease Association has sustained its work by appealing to its community to raise money through fundraising activities. State funding accounts for less than 25% of income. While we have managed with this self-sufficient approach in previous years, the economic crisis has impacted on the ability of our supporters to raise funds. We have had to become increasingly dependent on our State income. We have absorbed the 2009 cuts but further cuts to our revenue are a major concern. The current revenue awarded to the Irish Motor Neurone Disease Association amounts to less than €20,000 per month. The association has not received any increase to its revenue since 2005.

In light of our funding situation and the quality of services offered, we would appeal any decision to impose further cuts on the association. We would recommend that there are no further cuts to the annual grant aid for the Irish Motor Neurone Disease Association. Any such cut would result in severe disruption to basic services and increased risk to persons with motor neurone disease and their carers. We would recommend the provision of medical cards for those with motor neurone disease. They should be granted according to a person's medical need rather than be based on a means test. Future funding should be made available to enhance the key existing service of the specialist nurse. That would help us to provide care to families with motor neurone disease throughout the country and avoid the risk of exhausting our current nurse. The association would also ask the committee to consider funding of carers' income supports, housing and vehicle adaptations and the preservation of social welfare payments as they have an additional impact on families living with motor neurone disease.

I thank Ms Hudson for her concise presentation on what is a vitally important matter. I appreciate that.

I thank the delegation for the presentation and attendance at today's meeting. I find it hard to get my head around the fact that the association has just one nurse. I note that there are approximately 250 patients at any one time. I do not understand how one nurse can service the needs of all those people. How complementary is the nurse to the services provided by the Health Service Executive?

I note that €368,500 is spent on supplementing home help, which is €100,000 more than the grant being provided. The association is evidently servicing a need but surely it is the responsibility of the Health Service Executive to provide that service. Has the provision of increased home help been discussed with representatives of the Health Service Executive? The nurse specialist costs almost €66,000 but the home help costs nearly €368,000. If this could be transferred into the nursing area, it would be desirable. To have a complete national service for the 250 patients, delivered as professionally as possible without waste or overstaffing, how many front-line staff or nurses would be required? I refer to a service that acknowledges the different stages of the condition. We must put our finger on what is required and how it is to be obtained.

I thank the delegation for its presentation. Motor neurone disease is so debilitating and difficult to cope with, both for patients and their families, that on the basis of human rights alone the patients should have every support required, including physical supports and home help. Everyone present agrees with this and that sufferers should receive a medical card automatically. It should not be questioned. We should make a recommendation in this regard.

We need to try to understand the shortcomings in the service provided by the HSE that the Irish Motor Neurone Disease Association must address. I presume the nurse is entirely over-worked. Does the association recommend another nurse? What does it recommend for filling the other gaps in the service that it must fill at present?

I thank the delegation for its presentation. I favour the greatest possible support for patients with motor neurone disease and their families. From having worked as a medical doctor, I am well aware of the level of disability involved.

There are a number of voluntary organisations involved in the provision of services for people with severe disability as a result of neurological diseases among a range of others. Has the association ever met them to determine whether there is an opportunity for co-operation, co-ordination and integration?

Does the HSE work out a programme with the Irish Motor Neurone Disease Association? I fully support the association, particularly its specific interest in motor neurone disease and also its specialist service. It is not practical for one nurse to cover the whole of Ireland. I am thankful that there is probably not a sufficient number of patients with motor neurone disease to require a nurse within a reasonable distance of every patient. Against this background, has the association worked out with the HSE where it fits into an overall programme to ensure patients can benefit from a service of the quality to which they are entitled? I recommend that the HSE do so if it has not and work out the programme in detail. Funding has been cut straight across the health service and we must, therefore, try to achieve better value for the money we are spending.

I welcome the delegation. We all know of someone who has been through this experience and of the outcome. It is as trying for patients' families as it is for the patients. One does not automatically receive a medical card on diagnosis. Other diseases whose progression is not as rapid entitle one to a medical card automatically. We will take this on board and make representations to the Minister and the Department.

A delegation appeared before the committee last year to discuss a certain genetic condition. The body was looking for funding to team up with researchers in England. Since the number of patients suffering from motor neurone disease is small, albeit big in terms of our population, has the Irish Motor Neurone Disease Association developed any partnership with researchers? Much research is being done in universities in Ireland but I am sure the speed of research is proportional to the number of patients?

I welcome the delegation and compliment it on its work. The number suffering from motor neurone disease in Ireland, 250, is small. I presume the disease is not confined to any particular counties and that there are patients in all four provinces. Is there a central treatment centre where people can speak to one another about the disease with a view to understanding it? Are patients treated in every hospital in Ireland?

The delegation will sense that there is strong support for the platform it has put before us. After our meeting, members will probably want to determine how they can assist the association practically. I am very sensitive to the case it is making. A very good friend of mine was diagnosed with the condition in the past week.

My questions were similar to those of Deputies O'Hanlon and Kathleen Lynch in that they focused on medical cards, research and the development of medication to combat the disease. Will Ms Hudson respond to the questions as she sees fit?

Ms Ciara Hudson

With regard to the medical card, we have been unfortunate in that there is a medical card in addition to the means-tested one, namely, the long-term illness medical card. Neurological illnesses other than motor neurone disease fall into this category. Unfortunately motor neurone disease does not fit neatly into the long-term illness category because the majority of patients leave us within five years. That is not to say there are not patients registered with the association whose disease progression is slower. Some of these patients have been on our books for ten, 20 and 30 years.

The disease is unique and does not fit easily into different compartments. That is why it never fitted easily into a medical card category. Patients are excluded from availing of the long-term illness medical card, which covers other neurological illnesses, and they are forced to seek medical cards through means testing rather than medical-condition testing.

Does any patient have a discretionary medical card?

Ms Ciara Hudson

What does the Chairman mean by discretionary?

The HSE has discretion in certain circumstances.

Ms Ciara Hudson

One can appeal decisions and we write letters of appeal. Sometimes discretionary medical cards are granted, but not in all cases. Medical cards were taken from some of our client group because of the change with regard to the over-70s medical card. A gentleman registered with our association had his medical card withdrawn because of an inheritance. There were two cases in which a medical card was withdrawn.

The original number of patients, 250, has risen to 270. It is not an enormous group. We are simply asking for medical card access for 250 people, not tens of thousands.

We all recognise the disease and its effects. Is there a treatment regime or medication for motor neurone disease, MND, sufferers that could be covered by the medical card?

Are there other physical supports required in the home that could be covered?

As some of the 250 people already have medical cards, the inclusion of the rest would not be a high figure.

Ms Ciara Hudson

Yes, some of our community have already been granted medical cards.

The only medication being prescribed to people with MND is rilutek which has a modest effect in rapid progression cases of easing symptoms for a further three to six months. There is no medication that will halt or prevent motor neurone disease.

The medical card would open doors to services for families of sufferers. Last weekend, I met a man in Cork whose wife has motor neurone disease and is trying to hold down his job and bring up two teenagers. She is a rapid progression case and he is concerned how much longer he can hold down his job as he will become her primary carer in eight months. His wife was refused a medical card. It is instances such as this that we are encountering across the country.

Ms Marie O’Connor

Regarding Deputy Neville's question as to how our nursing service compares to that of the HSE, our nurse is highly-trained and qualified. She not alone deals with the patients and their families but educates other health professionals. She speaks to GPs, hospice staff and others about motor neurone disease. It is such a rare disease that in many instances GPs may have never come across a patient with it and may not recognise the symptoms. It can take some time for a patient to get a diagnosis because it can only be made by a neurologist, specialists of which this country is short.

We are aware one nurse is nowhere near adequate to provide a service to cover the country. Our aim is to have a team of specialist nurses. To do that, we will have to fund-raise as our annual grant from the HSE would not cover the costs.

Ms Gemma Watts

On the question of how widespread the disease is, going by HSE region, we have 53 MND sufferers in the Dublin north-east area, 80 in Dublin and mid-Leinster, 69 in the south and 70 in the west. Of these, 158 are male, 114 female.

Beaumont Hospital would be the most central location for a treatment centre.

Would it be helpful if they were brought together once a month in a community-based centre?

Ms Ciara Hudson

It would have to be within a reasonable distance from their homes because one cannot ask someone with such a debilitating condition to travel great distances.

We conduct a support group from our buildings which covers the Dublin area. We know of one run by Tallaght hospital once a month. However, this is limiting in that sufferers attending St. Vincent's or Beaumont cannot access it. The difference between a hospital-based support group and our own is that we can engage with sufferers regardless of where their diagnosis was made. This also provides a stronger network.

Is there any such support facility in the west?

Ms Ciara Hudson

It is growing in that there has recently been a neurologist appointment at Sligo hospital. We are building up a relationship with that hospital, as well as in Cork.

We are heavily involved with the research carried out at the Beaumont clinic. Professor Orla Hardiman oversees the various projects run there. She receives 5% of our annual income from fund-raising. We fund the IMND fellowship at the clinic. The current fellow is working on genetics and family history of MND or other neurological illnesses.

The board has discussed offering another bursary for non-medical research. We have engaged with the Medical Research Charities Group to see if we can get matched funding for new projects.

We have not engaged with the HSE as well as we could have. We make the executive aware of the services and how we are trying to provide them. However, there has not been enough time devoted to meetings with the executive. It is partly our own shortcoming but we have requested meetings.

We have also been engaged with the HSE in other parts of the country, despite our funding coming primarily from the Dublin region. It is an area that we can improve on and examine how we can roll out a service together.

The only obstacle we have come up against is that there is one clinical nurse specialist employed. As she is located in Beaumont Hospital, she can only deal with patients from that hospital, unlike our nurse who can work remotely. That is often used as a knock-back to us when we try to engage in discussions with the HSE.

We meet with MS Ireland regularly. It has a respite day-care centre in Dublin and we are in discussions for it to be available to our families in Dublin.

The committee can certainly make a recommendation to the HSE that it contacts the association to work out how it fits into its care programme. Funding can be part of that. However, discussing funding on its own is not the best step forward. It would be better to see how the association fits into the overall HSE programme for the highest possible and highest quality of care.

Deputy O'Hanlon has indicated that the HSE service plan is to be cleared for publication shortly; therefore, if anything is to be done, it needs to happen quickly because if the association is not included in the service plan for the coming year, it will not be in the loop. I am assuming that what the association is normally given is included in the service plan. However, it might be possible for it to act on Deputy O'Hanlon's suggestion as a matter of urgency to ensure it would have some input into the service plan.

I do not know if the association can let the committee know how many affected by motor neurone disease have a medical card. We might be able to work out how much it would cost to include everybody in the scheme. I suspect it might not be a very large amount. As Deputy Aylward said, the number who already have a medical card could be subtracted and we would then be better equipped to make the case that everyone should automatically receive a medical card.

Obviously, there is a need for home help that the association has identified and meets. However, to a large extent, it should be the responsibility of the HSE to relieve the association of that responsibility and release the finance involved for a more sophisticated involvement to ensure the welfare of the 270 people in its care.

That is a very good point. Perhaps the association might indicate for the committee the extent of its day-to-day involvement in supporting, say, a sufferer at an advanced stage of the illness.

I know one of the problems in the south-east, in counties Waterford, Kilkenny and Tipperary, is the lack of access to neurologists. That is one of the problems about which I hear in my clinics and it is one for the HSE to address.

Ms Marie O’Connor

I will try to address that question for the Deputy or at least give part of the answer. For a family, when a diagnosis of motor neurone disease is made – as happened in the case of my late husband – the first reaction is utter shock because it is such a rare disease and in many cases people simply know nothing about it or have never even heard of it. This is the experience of the majority and the Irish Motor Neurone Disease Association which has been in existence for 25 years is their first port of call. The association can point the patient and his or her family in the right direction and put them in touch with community services available locally. When the association was founded, these services were not to be found within the community, which is when the tradition of providing home help was established because the health boards were not providing such a service at the time. Once one starts to provide a particular service, as I am sure the committee is aware, it is very difficult to stop it. I cannot honestly envisage the association telling its patients that it cannot provide home help any more because the HSE has to provide it. In fact, the association is providing extra help for families and patients where the HSE can only offer a certain number of hours which is completely insufficient to meet a family's needs. It is wholly inadequate if an MND patient is being offered home help for one hour a day where it takes two hours to get him or her of bed, to be washed and dressed. It should be remembered that such patients cannot move their muscles and that everything has to be done for them when the disease is at an advanced stage. That is why we are spending so much on home help services.

Ms Ciara Hudson

On the requests being received from the community, public health nurses tell the association that they cannot offer the care packages that patients need. Demographics are of major importance in this regard. It matters whether a patient lives within the catchment area of a good hospital and can avail of a home help team. However, someone living in a remote part of west Cork or County Donegal cannot enjoy the same quality care package or avail of have the same number of carers. In such cases public health nurses tell us they have no care package to offer; that is where we step in to complement the limited services available. However, we do not seek to rush in in an area where a full service is available.

I suspect the joint committee may need to meet the association again on this matter. Collectively and individually, we want to do everything we can to assist. The committee will discuss the matter privately and decide how it may proceed in supporting the association. Perhaps we can meet again in the not too distant future to discuss the matter. I am sorry but we are operating within time constraints. I thank the association for its presentation and the invaluable work it is doing for the State in looking after the 270 people affected.

Sitting suspended at 4.35 p.m. and resumed at 4.38 p.m.