We will hear a presentation by the Multiple Sclerosis Society of Ireland. I am pleased to welcome Ms Anne Winslow, chief executive, and Ms Olga Estridge, services manager, who are here to make a pre-budget submission. I will ask Ms Winslow to make some brief opening remarks. Before doing so, however, I remind members of the parliamentary practice that they should not comment on, criticise or make charges against any person outside the Houses or an official, either by name or in such a way as to make him or her identifiable. Members who wish to make a declaration on any matter being discussed may do so now or at the beginning of their contribution. Members are also reminded that if there is a possibility of there being a conflict of interest, they should make a declaration of interest now or at the start of their contribution. I also draw attention to the fact that while members of the committee have absolute privilege, the same privilege does not apply to witnesses appearing before the committee. While it is generally accepted that a witness would have qualified privilege, the committee is not in a position to guarantee any level of privilege to witnesses appearing before it. I do not think, however, that this will be an issue as regards the presentation to be made by Ms Winslow and Ms Estridge. I now call on Ms Winslow to begin her contribution.
Multiple Sclerosis Society of Ireland: Presentation.
Ms Anne Winslow
On behalf of Multiple Sclerosis Ireland, I thank the Chairman and other committee members for the invitation to meet them today. It is an honour. We are delighted to have this opportunity to highlight our concerns and raise certain issues with the committee.
I will give a quick overview of MS Ireland. It is a national organisation working solely on behalf of people with multicple sclerosis, with which approximately 7,000 people have been diagnosed. Obviously, many others are living with multiple sclerosis cases as carers and family members. The organisation exists to facilitate people with MS to control their lives and environment, as well as live with dignity and participate in their community. I am sure members of the committee are familiar with this goal. We provide a range of services to meet the needs of people with MS. We also present these needs to others, including this committee, the members of which have the capacity to influence policy and service provision.
MS is one of the most prevalent diseases of the central nervous system. As I said, it affects 7,000 people in Ireland. It is the most common disabling neurological disorder among young people but can occur at any age. The long-term disabling symptoms result in high socio-economic costs to individuals. One way or another, I am sure members of the committee either know of such persons or are touched by those with the condition. They will, therefore, be familiar with the impact the disease has on the livelihoods of such persons, as regards being retained in employment, as well as the impact on their families and other individuals concerned. People with multiple sclerosis and their families require a society that gives access to effective diagnosis treatment, that manages symptoms and services and supports quality of life.
We are here to discuss the pre-budget submission which committee members have received, in which we identify seven priority issues. There are many other relevant matters of importance but the seven we have chosen are the ones presented to us on a day-to-day basis by people living with MS. The issues highlighted cross many areas of Government responsibility but they all impact on families and people's ability to live in their communities. I cannot over-emphasise the influence they have on people's lives and their participation in society because as this condition progresses, its impact widens.
The seven issues can be divided into two groups; the diagnosis, treatment and management of MS and the income and support services required to enable quality of life. The lack of timely therapeutic intervention can be costly to both the individual and society because appropriate intervention at a particular time can slow the progression of the condition. The timely and appropriate provision of neurology services are of great importance and represent a passing window of opportunity. If people pass into the next stage of the condition, the opportunity to avail of a particular therapy or treatment is lost. Therefore, if one is kept waiting for services, neurological or otherwise, the opportunity to avail of treatment may pass.
The experience of deterioration due to a lack of access to properly staffed units providing treatments is shocking. Tysabri is showing strong evidence that it stops progression of the condition but the window of opportunity is limited in size. The drug is available now but access is limited because it must be administered in hospital conditions. This is an example of passing opportunities involving a new treatment but it can also be seen in established treatments.
Some people never get to see a neurologist and even if they do, the chance to be reviewed may not arise or there may be another long waiting period. There is little emphasis on waiting lists when compared to hospitalisation because this relates to seeing a neurologist rather than admission to hospital. There are no timely or adequate initiatives to deal with this issue.
Historically, there has been under-investment in the health service in neurology services. Ireland has one of the worst ratios in Europe in the provision of neurologists. The figure stood at one to every 200,000 people but that gap has now widened, owing to population growth, to around one to every 220,000 people. There are 17 neurologists in the Republic of Ireland, compared with 24 in Estonia and 13 in Northern Ireland. A year on year spending programme is necessary to bring current services and the number of neurologists to the required level. Allied to this is the resourcing of community services for the long-term management of neurological conditions to avoid excessive demands on in-patient services. The key aim is to lower the waiting period through the appointment of more neurologists.
Under European recommendations Ireland should have a minimum of 39 neurologists but we are far from achieving that target. I note, however, that the Estimates allocate funding of €4 million for neurology. Once funding has been allocated, we seem to be unable to make timely progress in the provision of services. Apart from addressing the failure to provide adequate resources, several other hurdles need to be overcome. For example, staff and facilities must be provided for the delivery of services. I ask Ms Estridge to provide an example.
Ms Olga Estridge
The Multiple Sclerosis Society of Ireland has ten regional offices, including one in Letterkenny. Although County Donegal has the highest incidence of multiple sclerosis nationwide, people living in the county who need to see a neurologist must travel to Galway or Dublin. Members must imagine how difficult it is to make this journey when one considers that fatigue is a well known symptom of multiple sclerosis.
As regards the window of opportunity to which Ms Winslow referred, early pharmacological intervention is required when people are diagnosed with multiple sclerosis. This involves taking specific drugs as soon as possible. While there is no cure for the condition, drugs prescribed to people diagnosed with MS slow down symptoms and prevent relapses. If a general practitioner suspects a patient may have multiple sclerosis, it is important that the person sees a neurologist for a diagnosis. This allows us to ask what can be done and decide where we can go from that point. It is extremely difficult to be left not knowing if one has the condition. For this reason, early diagnosis is essential. It is crucial that people in County Donegal and elsewhere have timely access to a neurologist to have a diagnosis.
Ms Winslow
There is considerable evidence to suggest that the provision of timely therapies has a positive impact on preventing the progression of multiple sclerosis. This area has been well researched and there is a strong school of thought that timely access to therapies, specifically physiotherapy, is as important as, if not more important than, the drug treatment phase. Members will be aware of how difficult it is to secure access to physiotherapy but the problem is multiplied in the case of people with multiple sclerosis. The Multiple Sclerosis Society of Ireland calls for greater access to physiotherapy services. There are ways and means of addressing problems in the supply of physiotherapists.
Income and support services is an area of particular pertinence to the Department of Social and Family Affairs. The disability movement has lobbied for a cost of disability payment for several years. I note, however, that the Estimates do not refer to such a payment. It has been established by international and Irish research that the daily cost of living for people with a disability is higher than average and that the income maintenance they receive, which is, in many cases, set at a similar level to unemployment benefit, albeit with a few add-ons, is not adequate to meet the extra costs associated with living with a disability. These include day-to-day costs of transport, housing adaptations, aids and appliances, heating and so forth. Reports clearly show that people fall below the accepted economic level and median income. It is important to recognise this, even on an incremental basis over and above normal income maintenance, which is what disability benefit could be termed. In addition, not everyone with multiple sclerosis is eligible for a medical card. The condition makes a medical card essential. We are calling for entitlement to a medical card to be extended following a definite diagnosis of MS.
Committee members will know of the frustrations people face over mobility in their own homes. As they progress with multiple sclerosis, their homes need to be adapted. This is a costly process. The gap between ability to pay for even a minor adaptation and perhaps their loss of income because of their having to leave employment due to illness and the disabled person's housing grant is very wide, not to mention the variations between application processes and amounts available in different local authority areas.
Ms Estridge
We provide a social worker and case work service. Our case workers are always asking about accommodation. People find that they have gone from walking around to being in a wheelchair but there are very few three bedroom houses that facilitate a wheelchair. Essentially, the sitting room becomes the bedroom. If there are two or three children and there are a bed and wheelchair in the living room and no downstairs bathroom, the indignity experienced is awful. People consistently state, however, their wish to stay in their homes to be near their families. That is what they want and my gut feeling is that is what is best. These grants are vital because the costs involved are so high. There is a major difference between the grant and the building price. Red tape and differences in different areas cause problems.
Ms Winslow
The committee knows about driving and transportation. People tell us this is a significant need. The provision of a private car is essential for those with advanced multiple sclerosis because the public transport system does not extend down every street. Motor tax concessions must be reviewed to allow for people with a diagnosis or with progressing multiple sclerosis. The unpredictable nature of this condition which is distressing makes it insufficient to say a person can walk today. That might not be the case next month. Access to driving or passenger concessions is very important.
I cannot over-emphasise the difficulties faced by people with MS and their families. The condition has an unpredictable and progressively degenerative nature. Trying to manage such uncertainty can have a difficult psychological and social impact. I cannot over-emphasise the difference seen by people in some of the measures taken to address what we see as priority issues. I am sure all committee members realise that when people see even a minor change, it can be humbling to see the difference it makes in people's lives. The appropriate intervention in the cycle of MS can make all the difference in enabling people to stay in their community and get on with their lives.
Going back to the issue of windows of opportunity and interventions, if we could intervene at the right time, we could prevent people from progressing towards the advanced stage and becoming more dependent on their families and the State.
I welcome Ms Winslow and Ms Estridge and thank them for their submission which was well researched and presented. They made seven points and correctly indicated that the issue was relevant to a number of Departments. Some of the points made pertain to health, others to local government, the provision of finance and this committee. The Deputies and Senators present are all aware of the issues raised, of which we are painfully aware from experience in dealing with people with the disease in our constituencies.
The issues raised can be reduced to the provision of money. There is now so much money available that the Minister for Finance has indicated that he does not know what he should do with it. There is no reason many of these issues cannot be addressed in the forthcoming budget and Social Welfare Bill, etc.
I note that at last the HSE has started work on a national assessment of neuroscience services, with the final report due in February. There is talk of extending services to Waterford, Limerick and Sligo which would help sufferers in the Donegal region immensely. There is also talk of assessing services in Beaumont Hospital and the new national children's hospital where related paediatric issues can be raised. While action is being taken, we must advance.
The points on the use of Tysabri, etc. were well made. There is a report carried in newspapers today concerning the pressing need to extend neurology services. I agree with the delegates on the provision of physiotherapy services, which is a given. I call on the Government to act.
The cost of the disability payment comes directly within our area of responsibility. The Minister for Social and Family Affairs will have an opportunity in the budget to bring it forward. This is crucial. It has been sought by many groups for many years.
Every person with a disability faces extra costs, as they may need to go to a local grocery shop which is more expensive. They also may need more heat, etc., an issue which should be considered. When the delegates return, they might indicate an amount they believe would be required.
A cost of disability payment would cut across all disabilities, including chronic and not so chronic conditions. There is a continuum. Are the delegates seeking a particular scheme or payment, or different levels and types? How would such a payment be organised? If people are working or in receipt of a social welfare payment, other issues would arise. The issue may need to be teased out, although I know it has been debated time and again.
I would have thought anybody diagnosed with MS would have a medical card but the delegates indicated that this was not the case, although it should be. Disabled person's housing grants are a matter for the Joint Committee on Environment and Local Government more than for this committee. All members have come across instances of bureaucracy in completing forms and the delays involved if there is information missing. Deputy Mulcahy, a Government Deputy, spoke on this issue in the Dáil last week and stated that one needs an occupational therapist, even if one wishes to drill holes in the wall. Such matters should be decided at a much lower level and an occupational therapist may not be needed in all cases.
One must almost be an amputee in order to receive driving tax concessions. More and more people approach Deputies about this issue. They cannot understand why this is the case. I am supportive of the views put forward by the delegation. I encourage the delegation in its work and we will seek to help by way of debates in the Houses.
Ms Winslow
Regarding the cost of disability payment, we call for a weekly payment of €40. We could discuss how the greater the disability, the greater the costs, a matter that should be examined. The working committee under the Department of Social and Family Affairs made recommendations on this matter. I had some input when I was working in the Irish Wheelchair Association. The minimum payments should be €40. In order to put these people on the same level as any of those who are mobile in respect of earnings, we must consider that those on a middle income may be earning a reasonable salary but that is eroded by the costs of disability. The income levels applicable to other means-tested payments are too low in this case.
I agree with much of what the delegation states. As a general practitioner I have experience of patients with MS and have been involved in the Order of Malta trips to Lourdes as medical officer. It is scandalous that those with such a serious degree of illness can be left without the medical card. Expense is incurred even before one gets up in the morning. It is totally disabling. I was interested to hear that the illness is most common in Donegal. It is the people in this area who must travel furthest for services. We need 39 neurologists according to EU recommendations but we have only 17.
Ms Winslow
The figure of 39 is the minimum.
That is scandalous. This is a particularly tragic example and is similar to the situation regarding rheumatoid arthritis. Those with multiple sclerosis can be so debilitated that they end up in a wheelchair due to the lack of treatment. This is unacceptable and I back the delegation's comments. A constituent of mine with a brain tumour has yet to be assigned a date for an operation. A woman with an aneurysm, similar to a time bomb in her skull, must wait weeks for an operation. She could die at any moment. I do not understand the Government's position.
Ms Winslow raised a number of points in respect of medical cards, the disabled person's grant and the situation relating to cars. One or both arms or both legs must be affected before a person will even be considered for the grant, even though it is intended for those who are severely or permanently disabled. What is being looked for? It appears an attempt is being made to try to deprive people who are severely and permanently disabled of the grant. I support everything Ms Winslow said in this regard. I thank her for her presentation which was striking.
Ms Winslow
In respect of comments made by Deputies Stanton and Cowley, there has been underinvestment for a number of years. There is movement once approval is secured. For example, Comhairle na nOspidéal has approved the Sligo post. I understand it has also approved the mid-west post and that another has been approved in Cork. However, it is very hard to explain to people on a daily basis why the posts have not been filled and the hurdles that are in place. Following the provision of funding, the HSE must place a strong emphasis on filling the posts. However, one cannot over-emphasise the under-resourcing under all these headings. We must pressurise the Minister for Finance and let him know that they need attention.
I welcome the members of the delegation and congratulate them for the great work they do for multiple sclerosis sufferers, to whom I agree the medical card should be given more or less automatically. The tax concession for disabled drivers should also be reviewed.
I am informed that the Government has not refused any county council funding in respect of the disabled person's grant. Unfortunately, county councils must provide one third of the amount to be paid, which is where the problem arises. Perhaps, the society should talk to county managers and councillors about this issue. Some, but not all, give it priority. It is very important, however, that they do because the grant is very helpful to many.
Ms Winslow mentioned that people with multiple sclerosis liked to live at home for as long as possible. I agree that this should be an option, even for elderly persons. There should also be greater development of home care packages to ensure adequate support is available for people with multiple sclerosis who want to remain in their own homes. This is the way to go because I do not agree that such persons should be placed in nursing homes.
I welcome the two members of the delegation and thank them for their presentation.
To follow on Deputy Callanan's comments, a meeting should also be held with the county councils to get them on board because a considerable amount of money from the national coffers is allocated for the disabled person's grant. As has been said, nothing is being put in place at local level.
It is disappointing that there is only one neurologist for every 200,000 people. There must be a reason for this because a considerable amount of money is being invested in the health service, one of the biggest spenders from the national purse. Aside from political reasons, is there a medical reason to explain the lack of neurologists? Are people opting not to train as neurologists?
Nobody, other than those who are genuinely ill, should receive a medical card. The medical card covers many strata of society and is often not used for medical purposes. It should not be handed out willy nilly for one reason or another. That aspect should be examined. Any person who is genuinely ill, irrespective of the nature of the illness, and even if it is a child who suffers chronic bronchitis, should be given a medical card. In the case of a child it should be given regardless or his or her parents' income. How effective are the medicines available in the treatment of MS?
Ms Estridge
There is no cure for MS. Therefore, the treatments available try to prevent relapses. When a person living with MS suffers a relapse, he or she often loses the ability to function to some degree and will not be able to get around as quickly as previously. We want to prevent relapses. That is what the drug therapies available do. They will prevent or lengthen the time between relapses but they will not cure the condition.
Once a person with MS is well, apart from the therapies available, one aspect is about staying well. Staying fit, eating properly, exercising, movement, swimming, physiotherapy and keeping mobile are essential for people with the condition. The society provides a range of services in this regard for people living with MS. Our society has branches throughout the country which provide services, including gentle exercises, swimming and simple movement to maintain mobility.
Ms Winslow
There are two main areas of treatment. As Ms Estridge said, one is known as the betaferons treatment, the idea behind which is to prevent relapse. Tysabri treatment is used in the early stages of the condition and is only suitable for a certain category at a certain time. The evidence from the trials of that treatment, and subsequently, is that it can stop relapses in 68% of cases. The early evidence of that treatment is positive and hopeful. I will not go into the detail of the effect of that treatment on the bloodstream and the neurological damage to the nervous system, other than to say it is progressive.
With regard to the Deputy's point as to why there is only one neurologist per 200,000 people, there has been under-investment in this area over the years. It has not received the investment required. There may be other implementation issues related to consultants and various aspects, but it needs to be sorted for us to move forward. This is an under-resourcing issue and teams need to be put in place. This area needs to be tackled on those two fronts.
I thank the two delegates for appearing before the committee and making a presentation. It is worthwhile to keep this matter on the agenda and to the fore. The delegates raised a number of important issues.
It is appalling that people would have to wait two years to be assessed by a neurologist and that even having got an assessment they may never see a neurologist again. That is unacceptable. We only have one neurologist per 200,000 people. I respect that Deputy Carty asked why that is the case, but the Deputy's party is in government. The HSE and the Government should know the reason this is happening. It is due to under-investment and the lack of prioritising people who need the service. With all our involvement, I hope that position will be addressed. It is blatantly obvious that it needs to be addressed. It is not acceptable today that a person who has a serious illness does not get the service he or she deserves.
I do not want to focus too much on what Deputy Carty said but he asked a question about medical cards. There is no doubt in my opinion, or that of the Deputy, that somebody who has MS deserves to have a medical card.
I am not sure what Deputy Carty meant when he stated only genuinely ill people should receive a medical card. Perhaps he will have another opportunity to speak. While I agree with that, I do not accept the suggestion that people who have medical cards at present do not deserve them. People who have medical cards deserve them. Others who do not have medical cards need them and that issue must be addressed. I would appreciate if Deputy Carty forced this issue home when he has an opportunity to raise it with members of the Government. Perhaps he has a better opportunity than us to make the issue clear.
I am curious as to why Donegal has a higher incidence of MS than anywhere else. It may also answer the question as to why some people are more susceptible to getting the disease than others. It is important for service delivery to know what the average life expectancy is so we know how long someone will need services and related facilities to help him or her lead as full a life as possible. I understand there are varying degrees of MS and for some people the onset of MS is much slower than for others. Has the delegation encountered people with MS who lost their medical cards because income guidelines do not keep pace with social welfare increases?
The delegation made a good case of presenting the problems people with MS encounter on a daily basis and the lack of service delivery. We are all familiar with the problems associated with the disabled person's grant. It is appalling when one knows of someone who must have his or her home adapted so he or she can continue to live there. People may be happiest at home and can live a fuller life there. The same applies to driver tax concessions. It makes sense that we facilitate people to live as full a life as possible within the boundaries they experience. I would appreciate any replies which can be given to those questions.
Ms Winslow
Research continues into the cause of MS, which has not been identified. However, we know what happens medically. Examining a genetic link, a person's chances of getting MS are increased significantly if an extended family member has it. In an area without much population mobility, the incidence of MS increases. That may be an explanation for a more concentrated incidence of MS in rural areas. Research also continues into radon levels and other variables which may be present in areas with a higher incidence of MS. However, nothing definitive has been discovered.
When someone loses a medical card, we advocate, represent and seek help from politicians to have the card returned. The issue of income limits does arise. Perhaps Ms Estridge will speak more specifically about life expectancy.
Ms Estridge
The issue the Senator has raised is a difficult one. For example, we have a lady at the moment who was diagnosed in 1947 and is 93 years of age. She is now in an age-care facility and recently had a stroke. She had a fairly benign form of MS.
We also have a man who is 38 years of age and was diagnosed in his early 20s. His MS is progressing rapidly and he is very unwell. His mobility and cognitive ability are impaired. We have board members in their 60s and while their mobility might be somewhat impaired, they are robust, gung-ho and living full lives. We also have some very young people. Recently, we had an excursion by six people from Donegal to Disneyworld in France. They were all under 19, so we do not know how their MS will progress.
Ms Winslow
It is such a distressing and troubling condition, in that sense.
I met two fine footballers who represented their county. They were tremendous athletes but were struck down at a young age. We looked up to them when we were young. What happened to them amazed me.
This committee prepared a comprehensive report on carers and I wanted to raise the issue of the amount of effort carers must put into this work. It comes back to an old chestnut — although not everyone on the committee will agree with me, I believe carers are greatly affected by this matter. Their cognitive ability is greatly impaired, as is their physical ability. It is a huge responsibility. I have watched carers — wives, aunts, uncles and others — physically deteriorating before my eyes.
Unfortunately, we do not have enough public health nurses. I do not wish to make a political point in this respect because we have all been on the Government benches over the past 20 years — some more than others. If the Government is seeking areas in which to allocate money, let us cut out the fighting over bowls, be they Bertie's or Bartholomew's. The money should be given to needy areas. Let us leave something behind so that in 20 or 30 years' time, our successors will say "They did a good service there. They actually intervened". We should forget about lack of investment in the past because we are living in the present. Let us see what we can do because we have a lot of resources and should allocate them. It is no big deal. We are not going to create any inflationary pressures by providing protection for those who are subject to various illnesses and diseases. All we are doing is giving people an opportunity and trying to level the pitch so they can play on it. I mean that in the broadest sense.
On one occasion, I asked the Minister why people with cancer cannot be provided with medical cards. This should be the case, even if the cancer is treatable, and one hopes the person affected can return to a normal life. If a medical card was provided the minute someone gets word that he or she is suffering from cancer, it would provide a psychological crutch. People can become stressed out worrying about their medical costs, even though these may not arise. In fairness, I do not think anybody has ever been refused such treatment whenever he or she needed it. The same should apply to multiple sclerosis, as a medical card would provide another little crutch to help people along the way.
The carer's allowance should be given automatically to anybody who is involved in looking after people with multiple sclerosis. I know about these matters. I referred earlier to the two great footballers who fell ill and I have seen the efforts that must be made to get them into a car. It would bring a tear to a stone. Those men graced the sports fields of this country and it was a privilege to watch them. The case has been made well and could be described as a no-brainer.
Ms Estridge
We in Multiple Sclerosis Ireland work on the basis that one in every 800 people suffer from MS. Ireland's population is growing, which is great, but this means the number of people suffering from MS will increase and this is also a no-brainer.
Aspects of this issue fall under the remit of other committees but the cost of disability payment is something on which we have focused. Tomorrow we will prepare a submission to the Minister for Social and Family Affairs based upon the presentation to us by the Multiple Sclerosis Society of Ireland. We will ask him to prioritise the matter in the context of the forthcoming budget.
We thank the witnesses for appearing before the committee and request that they keep us informed of further developments, particularly relating to Tysabri, the drug about which we have all read in the past 12 months.