I thank the Chairman for the invitation to address the committee.
In the first instance, I wish to outline some of the context because it is quite important, particularly in terms of what sometimes are negative, popular perceptions on ageing. The most important thing is to emphasise that ageing is the most positive development to happen in our society and the fact that most of us will live to later life is to be welcomed.
My first slide uses a potent metaphor. The National Gallery contains a wonderful selection of art from Louis le Brocquy who turned 90 this year. We will not all be artists like Mr. le Brocquy but the slide presents a metaphor for the creativity and contribution we can all bring with us to later life.
The next slide relates to a CD prepared in our department in respect of music that people composed later in life. A huge number of individuals composed their greatest and finest music in their later years. Old age brings very positive things to the fore. It is important to stop discussing demographic timebombs and talk instead about the demographic bounty and the fact that older people have a huge amount to contribute. Dr. Garret FitzGerald continues to contribute in a meaningful way. I would place him among hugely important political leaders who, after the age of 65, contributed enormously to their countries. I refer here to Mannerheim of Finland, Churchill and Reagan.
Another myth that must be debunked is that we are faced with some catastrophic tidal wave of disability. Thanks to improved health and wealth, the level of disability in the developed world is decreasing. Among older Americans, it is dropping at a rate of 1.5% per year. As members can see from the graph on the next slide, the blue line represents what the level of disability should have been and the red line represents the actual level. Older people are fitter and healthier and this is evidenced by the fact that nursing home usage in the United States is dropping, both in relative and proportionate terms, and nursing home usage here flatlined between 2000 and 2004. There is no demographic timebomb or impending catastrophe. There is, however, a significant issue to be addressed, which is manageable in a professional and appropriate way.
There have been hugely positive developments in Ireland. The title of my presentation is "Good intentions are not enough: moving to an informed and supportive care system for vulnerable older people with complex illness and disability in Irish nursing homes", but major medical advances have been made. The medical card for those over 70 is an extraordinary advance, with very good evidence that it is leading to improved health among older people. The home-care packages, although not perfect, represent a major advance. This week's decision on community rating is important for older people and there have been increases in the number of specialists. It is important to try to present a balanced score card.
We still, however, have difficulties in recognising the central role of older people in society in a number of areas. The Kennedy report in the 1980s mentioned that the major problem with our hospital system is that we do not put older people at the centre as a core-client group of our hospitals. When it comes to new-build and major capital projects, the last department to be built is that relating to specialist care for older people. The Kennedy report stated 25 years ago that our priorities are wrong.
There are major concerns in gerontological circles regarding an under-discussed shift away from defined benefit to defined contribution pensions, particularly as the most important factor in a healthy old age is a secure and adequate income. In that context, equity release schemes are highly unjust. We need to move more towards tailored health care. As mentioned in the review, there has been a shift from public to private nursing homes without significant debate taking place. All the literature indicates not that the private sector cannot manage nursing home care but that the task is much more difficult in terms of maintaining quality.
There have been warning signs regarding problems relating to quality. The National Council on Ageing and Older People, under its various names and over a period of 25 years, issued eight reports which have consistently stated that we have not addressed this issue. The Commission on Nursing, the Irish Society of Physicians in Geriatric Medicine, both in 1997, and, more recently, the Human Rights Commission and older people's advocacy groups commented upon this matter. Until now, what they stated has not had a huge impact but the cumulative effect of their remarks is important.
Let us try to obtain some idea of how important this matter is to members and me. Although at any one time in most developed countries 5% of all older people will be in nursing homes, the issue is that towards the end of our lives the risk that this will happen to us will increase. When the women in this room reach 65, they have an almost 40% chance of spending time in a nursing home. For the men, the figure is 25%. This matter, therefore, will have a major impact on everyone at this meeting.
Why are people in nursing homes? This is an extremely important matter because one of the fallacies abroad is that it is some form of social-hotel type care. The key issue revolves around disease and disability. My next slide relates to Bowman's study of 10,000 beds in the BUPA system in Britain and shows that the majority of people to which it relates had disabling neurological diseases, such as dementia, 38%, stroke 25%, parkinsonism, neurological trauma and multiple sclerosis. Disease and disability, rather than social factors, lead to people requiring long-term care in nursing homes. Dementia, stroke and other neurodegenerative diseases dominate. In light of the current system, the needs of the vast majority of people in nursing homes could not be met at home. It is often stated that between 10% and 15% of people are low-dependency individuals. It is important that this figure should be investigated because many actually have complex neurological disease that has not been diagnosed.
There are concerns with regard to standards of institutional care, particularly in the context of inadequate funding and a lack of meaningful standards, a comprehensive inspectorate and guidelines as to how care should be implemented.
Can we provide such care in Ireland? The answer is yes. Until I carried out the review, I was not aware that there are comprehensive and supportive national standards relating to children's residential centres. These are well-phrased in terms of the clients, namely, the children. It came as quite a shock to realise that one part of the system could provide such comprehensive and helpful guidelines. These do not offer a complete solution and we will have problems in children's homes. They dictate, however, that if children are sick or have disabilities or if they need special medicines or food, information in this regard should be in an individual's care plan so that everybody responsible for caring for him or her is aware of his or her needs. The HSE must give every child in care a social worker. In addition, the guidelines refer to reviewing care plans with children and their families. To the best of my knowledge, that does not happen at all in the nursing home sector. The important thing, when one considers the children's residential care sector, is that we know we can do it when we put our minds to it.
Specialist health care is an extremely important component. Investment, particularly in gerontological nursing, is crucial, as stated in the second UN declaration on ageing in 2002. The declaration points out that not only do older people need the same health care as everyone else but they need more because old age brings with it complexity. In addition, it states that such health care must be effective. The declaration goes on to point out that health care designed to meet the specialist needs of older people must be made available, taking into account the introduction of geriatric medicine and gerontology into relevant university curricula and health care systems. Ireland lags behind in respect of ensuring that every health care worker has access to training on ageing. That is one of the areas to which we must give consideration.
The challenge for me in undertaking this review was how to enhance and support those who are doing great things in a hugely unsupportive system. I work closely with one public nursing home and I often liaise with private nursing homes. People are trying really hard and are extremely dedicated. How do we retain these people, indicate to them that we do not disrespect what they are doing and ask them to consider with us how we can undertake the radical change towards a true person and needs-oriented service? That is our challenge. The National Council on Ageing and Older People and many international bodies have shown that if we do not have adequate funding and adequate numbers of trained staff, we will find ourselves in a situation that promotes elder abuse. This was adverted to in the official health policy on elder abuse, Protecting our Future.
The committee will have read in the handout the key elements of the review. First, as I did my search at the end of 2005, I could not find a clear policy declaration by the Department of Health and Children and the HSE on the complexity and sophistication of care and the vulnerability of those in long-term care. The issue was not sufficiently central or not phrased in such a way as to make it clear that they recognised that these people are exceptionally vulnerable.
The second issue is that of adequate numbers of adequately trained staff. I have laid out some guidelines as to how this issue might be dealt with. We know many other developed countries have had nursing home scandals that have led to improvements in care, most notably in the United States in the mid-1980s which led to some of the measures I have recommended.
The third issue is that of nurses with diplomas in gerontology. This is where the phrase "good intentions or kindness are not enough" comes into play. Kindness is important, but we do not think much of an airline pilot or cardiac surgeon who is kind, but not able to do the job. This is a complex and sophisticated area of care and we must invest in diplomas in gerontology for nurses in both public and private nursing homes. Care assistants need a FETAC certificate, which is a vocational training standard. We need appropriate induction of international staff and we need a staffing dependancy tool. We set a minimum standard of one nurse per nursing home at all times, but that has clearly failed. It must be made clear that we must have a certain amount of trained staff for a specific amount of dependency. I have recommended the Royal College of Nursing tool, because it seems appropriate.
We need a single unitary system for collecting data, a minimum data set, which will also help in formulating care plans. Adequate funding is central and I will elaborate on this shortly. We need medical officers who are not only trained but who are supported. They must be made aware of these supports.
Nursing home legislation needs review. Ita Mangan, one of the foremost commentators on the law, notes how priority is given to the property rights of the owners of nursing homes rather than to patients, who are vulnerable older people. This must be reversed. Inspection teams need further skills training and we also need a significant investment in therapists. Nursing home patients have complex problems, for example, swallow disorders, immobility difficulties, difficulties adapting to chairs, cutlery and pillows etc.
Specialist support is another issue. Geriatricians, old-age psychiatrists and others are keen to support and often stretch themselves to do so. In our service plan for Tallaght Hospital last year, we said we were more than happy to consider an expansion which would allow us to cover local nursing homes in a more structured and organised way. I am sure many other geriatricians and psychiatrists will try to respond similarly.
Our professional bodies must clarify the complexity and scope of practice in this area. The most numerous group of health care professionals in nursing homes are nurses. It would be helpful if An Bord Altranais stated more clearly that care of the elderly is not an area where some kind of generic general cover is provided but that it is a specialised area. We also need to strengthen the public health overview and the minimum data set will do this.
I will move on to some of the elements covered in the review. The diploma in gerontology has been successful and almost all universities offer one. We must ensure we allow and enable release of nurses to attend these courses. We must also look at how we can encourage our international staff to take up these courses as they find signing up to them quite daunting.
Nurses are key workers in terms of marshalling the complex care required by nursing home patients, particularly for example with regard to restraints. All the good research in this country on avoiding restraints has been done by specialist nurses such as Imelda Noone in St. Vincent's. We find fewer restraints are used by specialist nurses. There are also dilemmas of care and consent. Some patients do not want their tablets. Aggression towards staff is best dealt with, not by a chemical or physical restraint, but by specialist staff and training on the issue of elder abuse.
Care assistants are part of a key and often neglected area. However, credit is due to the public system which has embarked on training care assistants through FETAC. This approach should be universally applied to include the private system. Direct care workers are the key solution. Are they replaceable by unskilled labour or the key to quality care? Most of us wish it to be the latter, but to achieve that we must invest.
The minimum data set is the only show in town. It is the international standard and is quite brief. It arose as a result of the scandals in the United States in the 1980s and everybody in a nursing home in the US must have a completed minimum data set. The beauty of the system is that not only does it provide an outline of the care needs, it helps formulate a care plan and helps us understand the dependency of the patient in question. The data set is in electronic format and can provide an instantaneous picture of what is going on. However, it is a big investment to put this into 550 plus public, private and voluntary nursing homes and to provide the training required to operate the system.
There is no no-cost solution. We found in 2005-06 what was found in the US in 1995 and in England in the 1980s. Public nursing home care costs approximately £1,500 per week, while one of the national estimates for private nursing homes is approximately €640, well below what the Joseph Rowntree Foundation suggests is appropriate. The answer is not to reduce the level of care in public nursing homes, but to set that as the standard towards which we should aspire for complex care. As matters stand, the more complex and vulnerable patients end up in the public system, somewhat analogous to special needs children in the education system.
The Joseph Rowntree Foundation suggested in 2002 that the UK nursing home sector was under funded by £1.6 billion and that nursing home care could not be provided for less than €734 per week in 2002. In Ireland in 2006, the average in the former Western Health Board area was €495 per week. Clearly we have a lot of catch-up to do and we must do it quickly. I Googled a query for a three-star hotel in the low season, November, in Dublin and found that bed and breakfast for a week would amount to €701. There is quite a gap between that and the cost of care in a nursing home. No other meals are included and no continence therapy, nursing or infection control is provided. To ask for care to be provided at three-star level for the rest of one's life is not unreasonable.
The inspectorate must be funded and we must be careful that we do not ask people to do it as well as another job or without increasing employment limits. It is important the HSE is not disadvantaged in terms of employment limits in the social service inspectorate. If we need more people, we must get them. We cannot rob Peter to pay Paul in this area. Expertise is important. I have suggested openly that public health doctors and nurses should think twice about being key leads without significant support from specialist and residential care in terms of this kind of work. I have already mentioned the area of clinical standards.
The first version of this report, which is largely the same as this in substance, has been with the HSE for nine months. We must think hard about how we can avoid distancing ourselves from older people. To do this we need to change our phraseology. We need to move from talking about the "elderly". Many headlines use this term, but in any other circumstances it is a pejorative word. We might have a mature wine or cheese, but the term "elderly" would be pejorative. Older people have asked that we use the term "older people" and we try to do so. I like to think we should use the phrase "us as we age" so that older people are not seen as a separate group but are "us". We are building a system for ourselves.
I have added some reflections at the end of the handout with regard to what we need to move from good intentions to an informed position. We need a clear route map on how the recommendations will be put in place. I am encouraged that the Department and the HSE have said they accept these recommendations.
We need more transparency of process and engagement with expert opinion and advocacy groups. I was somewhat disturbed to read in the press that the names of people in whatever group was looking at the recommendations in the report would not be released to the press. I am not sure what the confidentiality issue is in a major issue of public importance. I cannot find it using Google and searching what group is looking at minimum standards in nursing homes. I would have thought these should be very clear, open processes that are clearly engaging with expert opinion and advocacy groups.
The lines of funding need to be clarified because by accepting these recommendations we have accepted a major stepping up of the cost implications. We have done the same for cardiac care and for cancer care where there have been huge investments. This is the next one we have discovered. It is important that the employment ceiling is openly discussed. I am aware that many things in the health services get caught up in the employment ceiling and there should be open and frank discussion about whether employment ceilings are an impediment to developments in this area.
I refer to one of my favourite phrases from the little I know of James Joyce. He wrote to his brother that he left Ireland because of the hemiplegia of the will, a phrase from stroke literature. In many ways we have shown in Ireland, whether it is standards of care for children, whether it is our developments in cancer care, cardiac care or bold initiatives like the medical card for the over 70s, that we can rehabilitate ourselves beyond this hemiplegia of the will.