Oireachtas Joint and Select Committees
Wednesday, 9 November 2016
Select Committee on the Future of Healthcare
Community and Social Care Support: Discussion
We will continue on the theme of mental health and mental health services. From Mental Health Reform, I welcome Dr. Shari McDaid, director, and Ms Kate Mitchell, policy and research officer. Mental Health Reform is an umbrella group that represents more than 50 organisations working and advocating in the area of mental health. It promotes improved and prioritised mental health services in Ireland and best practice in all aspects of service provision to people experiencing mental health difficulties. I thank Dr. McDaid for making herself available. She had other commitments this morning, so we very much appreciate her coming in.
I will deal with some formalities first. I advise the witnesses that by virtue of section 17(2)(l) of the Defamation Act 2009, they are protected by absolute privilege in respect of their evidence to the committee. If they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable.
I now ask Dr. McDaid to make her presentation.
Dr. Shari McDaid:
I thank the committee for giving Mental Health Reform this opportunity, which we very much appreciate, to try to put mental health at the heart of the future vision for health care in Ireland. Mental health is a cross-cutting issue that is deeply entrenched in every aspect of Irish society. In 2015, the European Joint Action on Mental Health and Well-being, to which Ireland is a party, stated, "mental health is more crucial today than it has ever been" due in part to its impact on every domain of life. This effect is compounded by the growing recognition of mental health difficulties and, as a consequence, the increasing demand on mental health services that are already under-resourced and overstretched.
Mental health difficulties currently constitute one third of the disease burden in Europe and, according to the World Health Organization, depression is expected to be the largest contributor to disease burden by 2030. The Healthy Ireland survey reports that 9% of the Irish population over the age of 15 has a "probable mental health problem", which equates to approximately 325,000 people on the basis of the 2011 census. Almost 20% of young people aged 19 to 24 and 15% of children aged 11 to 13 in Ireland have had a mental health disorder, according to research conducted by the Royal College of Surgeons in Ireland. According to a survey conducted by the 3Ts organisation, suicide is the leading cause of death in young males, exceeding road traffic accidents and cancer. More recently, new research published by the Economic and Social Research Institute identified the two most common types of work-related illness, one of which is work-related stress, anxiety and depression and stated that stress, anxiety and depression account for 20% of work-related illness.
The costs relating to mental health difficulties in Ireland are significant. There is a strong correlation between physical and mental health difficulties. All together, when the NHS studied this, it stated that the extra physical health care caused by mental health difficulties was estimated to cost the NHS at least £10 billion per annum. Adults aged 18 or older with any type of mental disorder or major depressive episode in the past year are more likely than adults without these conditions to suffer high blood pressure, asthma, diabetes, heart disease and stroke. Regarding health service utilisation, adults with any mental disorder use both emergency departments and hospitals more than those without a mental disorder, leading to higher health care costs. In Ireland, it has been estimated that the overall cost of poor mental health is about 2% of GNP, which we calculate to equate to about €4 billion. To put this in context, the cost of overweight and obesity in Ireland was estimated in 2009 at €1.13 billion, equating to 0.7% of GNP.
One can see the impact of mental health is greater than some health issues that are getting much attention. This evidence suggests the individual and social returns from adequate investment in mental health in Ireland are likely to be "high and sustained", according to the Centre for Economic Performance in England. The main economic costs of mental health difficulties in Ireland have been said to be associated with the labour market as a result of lost employment, absenteeism, lost productivity and premature retirement.
Mental Health Reform strongly recommends that the area of mental health is recognised and afforded appropriate priority within the wider health agenda to reflect its significance in contributing to the burden of disease in Ireland and its impact on other areas of life. Despite the high costs of mental health difficulties to Irish society, resources for mental health services continue to be disproportionately low compared with resources for physical health services. For example, in the most recent budget, announced for 2017, there will be a 3% increase in revenue funding for mental health; the wider increase in revenue funding across the health budget was 7.4%. In the 2016 budget, mental health funding represented just 6.2% of the overall health budget, which is significantly lower than other leading countries and lower than recommended in Irish mental health policy. In both Britain and Canada the proportion of funding for mental health out of the health budget is approximately 13% and in New Zealand it is 11%. This Government’s allocation for next year will do little to address the historical underfunding and decades of neglect of Ireland’s mental health system.
I would like to speak about mental health in primary care. In addition to gaps in mental health services, there continues to be a significant lack of capacity within the primary care sector to provide comprehensive mental health at that level, including early intervention, detection of mental health difficulties and appropriate primary care interventions for adults and children. Such gaps include wide variation in access to mental health support in primary care and the underdevelopment of the role of mental health workers in primary care teams. There is a lack of a comprehensive range of mental health interventions in primary care and this is reflected in the current limitations of counselling in the primary care service, which is only available to people over age 18 who have a medical card and has a maximum of eight sessions. We know that as of the first quarter of 2016, 2,500 clients were waiting for counselling for between three and six months with the counselling and primary care service. That is significant as this is supposed to be an early intervention and quick access service.
I will speak about e-mental health, as there is potential for this to play a significant role. E-mental health is another strand of service delivery that has received little attention in the Irish context and could be considered in the development of our health system. There is potential for e-mental health supports to improve accessibility and affordability of mental health care, reducing the extent of unmet need. This, in effect, could address health inequalities and social exclusion, particularly in times of increased demand and overstretched services. We note, for example, the counselling in primary care service received 17,000 referrals in 2015; however, an estimated 325,000 people over age 15 in Ireland have a probable mental health problem, so we can see there is a significant gap in provision when compared with need.
It is very important to balance investment in the future health services towards prevention and early intervention services, particularly those targetting the mental health of infants, young children and their families. Despite targeted investment by Government in evidence-based programmes to improve outcomes for children and families, such as the area-based childhood initiative, there has been a lack of national direction on mental health in this area and a lack of consistency in incorporating mental health integrally into local early intervention programmes. Prevention needs to include an approach that places the social and emotional health and well-being of infants on a par with that of their physical health. This should be set out in national policy and complemented with the necessary resources.
In 2013, the World Health Organization recommended redirecting mental health spending towards community-based services, including the integration of mental health into maternal and child health, thereby enabling access to better and more cost-effective intervention. We note a recent evaluation of a parenting programme in Ireland indicated that for every €1,463 spent per child, a saving of €4,599 per child was realised. In this context I draw attention to the fact that according to information we recently examined, funding for family resource centres - a community resource that can be a great space for early intervention - was cut between 2008 and 2015 by 38%. The financial impact on wider society by neglecting to invest in early intervention services has been clearly identified, from economic disadvantage to academic underachievement, substance abuse, so-called juvenile delinquency and intergenerational effects, to name but a few. Researchers, clinicians and economists are in strong agreement that adequate investment in this area and a move towards prevention and early intervention, as opposed to crisis care, will lead to long-term economic savings, enhanced social capital and individual better outcomes.
One of the clearest goals must be for mental health to become the business of everybody in government and not just the health system. Overall, Mental Health Reform recommends that the Government adopts a "mental health in all policies" approach. This approach has been defined by the European Framework for Action on Mental Health and Wellbeing as the development of "mental health promotion and prevention and early intervention programmes, through integration of mental health in all policies and multi-sectoral cooperation".
To conclude, I draw attention to our core recommendations. These are that mental health should be prioritised in any future health care vision and integrated with physical health care throughout the health system, that the principles of human rights, autonomy and recovery should underpin all health service delivery, including in mental health, the wider health services and related social and community services and a "mental health in all policies" approach should be adopted to take account of the broad impact of mental health on a range of social and economic policy areas. Additionally, the Government should invest in mental health in primary care to ensure the mental health needs of the population are addressed at the lowest possible level of the mental health system. This should be supported through investment in mental health resources in primary care and implementation of a shared-care approach between primary and secondary mental health services. Furthermore, individuals with long-term mental health needs should be afforded access to free primary health care. That is very important to facilitate recovery and long-term health. Finally, investment in prevention and early intervention services should be put in place to support the mental health of infants, young children and their families.
I thank Dr. McDaid and Ms Mitchell for being here today and we appreciate them taking the time to do so. It is a very important subject. I remember being in school and learning the Latin maxim, mens sana in corpore sano; I am not sure if I am saying it correctly but it refers to a healthy mind in a healthy body. That was drummed into us and it is very true. The witnesses have reflected that quite comprehensively in their submission today.
I am interested in the addiction area, as I mentioned to the witnesses from St. Patrick's Hospital. It is not mentioned in the submission but that is not to say it is not of paramount importance when we speak of mental health. What is the view of the delegation in that regard and particularly the tackling of addiction in young people? Professor Lucey from St. Patrick's Hospital mentioned how mental health issues can start in people under 25. Where there are career guidance counsellors in schools, I would like to see mental health counsellors, or at least counsellors if they are not called mental health counsellors. These can be people who people can talk to, particularly teenagers and especially when they start drinking etc. I would like to see that happening but I wonder what is the view of the delegation in the context of its all-policies approach and the EU framework that has recommended it.
We should consider such a post and I think it would be worthwhile.
Funding for family resource centres has been cut. I will push for the decision to be reversed because family resource centres act as a preventative measure. I would like to hear the views of the delegation on the matter.
I have spoken in the Dáil about education being key in protecting one's mental health. Dr. McDaid outlined in her submission that "suicide is the leading cause of death in young males, exceeding road traffic accidents and cancer". Suicide is a scourge in this country and I will do all that I can to help improve the situation. I thank the delegation for attending today.
I wish to ask a broad question. The delegation mentioned that mental health care could and should be integrated with physical health care. As Deputy Madigan has pointed out, we all have spoken about mental health in the Dáil. We are all aware of how important mental health is and have asked for something to be done, but let us consider the perspective of this committee. In terms of having integration at all levels from primary care onwards, I ask the witnesses to outline practical steps that can be taken in the areas of funding, skill mix and the integration of health professionals.
I thank Dr. McDaid for her work. It has been amazing reading about what the group has achieved over the years. It has been extremely beneficial.
I will only make a few points as Deputies have made similar points. I was struck by the cuts made to the budget for resource centres. Dr. McDaid mentioned repeatedly that prevention is better than cure and that if we do not nip it in the bud, we will set off on the wrong foot. Recently I read a report compiled by the Northern Ireland Forum. It provided startling figures that from 2001 to 2015, there were 7,431 reported deaths by suicide in the South and that 4,177 people since 1988 in the North have lost their lives due to suffering a mental illness. As many speakers have said already, we have raised the issues in the Dáil. There is a genuine consensus here that something has to be done and fast.
Counselling sessions have been mentioned. Eight sessions may work for some people but others may require 20 sessions. Also, the people who are above the qualifying threshold and, therefore, do not qualify for a medical card lose out with this system. People under the age of 18 years do not have a chance to access the measure. All of this bring us back to the primary care model and prevention.
Education is one of the most important aspects that has been raised here. We must give people coping skills from an early age to deal with the pressures that they will meet throughout life. All of us have listened intently and learned a great deal here. The facts and figures are worrying as they highlight what does not happen on the ground. We, as a society, are stuck at the cure stage but we should be working on prevention. Approximately ten years ago the World Health Organization conducted a study on how much a person who leaves schools at 18 years and joins the workforce contributes to society in taxes. I believe a person's life should be valued properly. That might sound strange but such a figure would highlight how much society loses when a young person dies compared with his or her lifelong contribution to society, thus showing it is a win-win situation. I am sorry for being a bit long winded.
Dr. Shari McDaid:
Not at all, Deputy. I will answer the questions in the order in which they were asked.
Deputy Madigan asked how addiction fits into the area of mental health. We have a structural problem in the health system in that we have separated addiction services from mental health services in a way that does not reflect the experience of individuals who have addiction difficulties. Many people who have an addiction issue also have a mental health difficultly. Sadly, many people with a mental health difficulty sometimes reach out in inappropriate ways by supporting their mental health through addiction.
One thing that we need is a much more integrated service approach to supporting individuals with both issues at play - mental health difficulties and addiction issues. In the worst case scenario we have seen people who have an addiction being turned away from mental health services and we have had some tragic situations in that regard.
The idea that has been put out is what one might call a no wrong door policy. That means that if one arrives at the door of a health service, be it a mental health service or addiction service, the service should work with a mental health service adequately to provide the holistic approach to care that a person needs. We need to address addiction and substance misuse and the whole area of the inappropriate use of alcohol in this country. I hope that the alcohol Bill, in the form proposed by the Government, will make its way through the full process. We also need to be prepared when people struggle with these issues to recognise that they might need mental health care and to make sure that the mental health care is provided to them.
In terms of mental health counsellors in schools, I am intrigued that a member made the suggestion because it was suggested to me by a young person recently when we visited the Galway child and adolescent mental health services. One of the messages we came away with very clearly from that visit is that young people do not feel that there is anyone within schools who they can turn to for support even if there is a guidance counsellor. The message that was given to me was that a guidance counsellor might talk to them about their future career but might not make it clear that he or she can support the child's mental health. We probably need some kind of identified individual in schools that students or the children themselves will have confidence in going to for help. We must also realise that we are going to need other options because it would be very easy for one person in a school to quite quickly become overloaded. Jigsaw services are important. Other innovative solutions for children and young people, like online, should be explored.
Deputies Madigan and Buckley asked about the cut in funding for family resource centres. A Vision for Change set out that the broadest area of contribution to the mental health population would be in the community and yet in some ways that is the area that has been least developed and resourced. We cannot pay lip service to community involvement in mental health care. We cannot just say we want everyone to talk about mental health in the community and be open to doing so without resourcing the initiative.
We know that people who live in disadvantaged communities are at much higher risk of developing a mental health difficulty. It would be very appropriate to provide dedicated resources in centres that have open access, where one can start building the confidence of disadvantaged communities in particular to support each other in looking after their mental health and to have better direct access to care where needed.
Deputy O'Reilly asked the important question of what does physical and mental health care look like. One of the reasons it is hard for us to conceive of that here in Ireland is that it is so unavailable that we are really just starting the conversation. About a year ago someone talked to me about how they had a particular health treatment or an occasion for surgery that was followed by rehabilitation. The person told me that no one, after that process, asked about his or her mental health needs even though it was a difficult time.
Similarly, in regard to cancer treatment and to a whole range of other conditions, having mental health raised as part of a conversation in a coherent way and making sure there is access in primary care to mental health workers who are ready and prepared to support individuals with their mental health, whatever their health issue is what we really need. It comes back to the issue of significantly boosting the capacity of our primary care mental health system, probably through something such as psychologists in primary care who are available to conduct assessments and early intervention support, but also much greater capacity in our counselling and primary care service and directing people to other options such as e-mental health once those are developed.
Deputy Buckley also raised the issue of the education system and asked about making mental health part of what every child learns as a normal skill so that every child learns to look after their mental health as they are growing up. It calls to mind the fact that mental health guidelines were published by the Department of Education and Skills for primary and post-primary education, but no resources whatsoever were attached to the publication of those guidelines. Clearly we can talk about mental health and the need for every area to be involved but we have to start to invest in the mental health of Ireland's population if we want to see the fruits of those aspirations in terms of Irish people having better mental health care.
Deputy Buckley also raised the issue of crisis care in the context of the numbers of people we have lost to suicide in Ireland. This is an area that mental health reform has been very concerned about in recent years, particularly because so many people who use mental health services and their family members have come to us expressing their frustration that when the person knew he or she needed urgent help, never mind the people who are afraid to seek help, he or she ended up having to go to an accident and emergency department, waiting for hours and hours and not getting an appropriate response to their urgent distress. We have called for direct access to a 24-7 specialist mental health services across the country in every community in Ireland. We think that is possible to implement. We think it is possible to implement at a minimum a seven-days-a-week service, provided by the mental health services with outside telephone support outside of hours that would reach much of that need and ease much of that distress for people who struggle with their mental health on an ongoing basis. We are calling for an implementation plan for that 24-7 service within three months and full implementation of the service within two years.
I thank Dr. McDaid. I am very conscious that we have other guests in the Gallery and that there is another piece of work that we want to do this morning. I ask members to keep their contributions as short as possible please.
I thank Dr. McDaid for her presentation. Regarding the integration of services for mental and physical health, would it be Dr. McDaid's considered or informed opinion that there is segregation; that acute hospital care is one service, with social care and mental health care being dealt with by a separate wing of the health services? Does she believe that the root of the problem probably comes from the old model where people with mental health issues were put into institutions? For the purpose of the work of this committee, does she believe that whole structure must be changed in order to get the services for mental health and physical health working together as she referenced in her statement?
In regard to a limit of eight sessions on the GMS medical card scheme, I am not sure of any other aspect of health care where barriers and limitations to the amount of treatment are put in place. One often sees barriers in the treatment of end-stage disease, where the treatment is expensive. Very rarely in my experience, and I have worked as a pharmacist in the NHS and as a community pharmacist in Ireland, does one see limitations being put on the prescriptions that one can get filled. Something that was not raised during the proceedings but I have seen it happen in community pharmacy, is where private health insurers put a time limit on inpatient care in a psychiatric hospital. It is one of the issues that nobody ever speaks about. A consultant psychiatrist may prescribe that one stays in hospital but once a patient has reached his or her limit, one is turfed out or somebody has to pay to allow the patient to remain in hospital. I do not know of any other aspect of health care, where that sort of discrimination is practised. Has work been done on dealing with that issue?
With the rise in the rate of acute depression in the community during the recession, there is an onus on the patient to get better themselves. If one is not a medical card patient and one presents with depression in the GP surgery, my experience is that the onus is on the patient to source a psychotherapist or a psychologist. I have heard that six months of counselling for people with a treatable depression could cost about €5,000 in professional fees. I think that is an enormous barrier to getting oneself well.
Has Dr. McDaid any views on the regulation of rogue counsellors or people offering counselling services online to vulnerable patients? It seem to be fairly widespread. In regard to Dr. McDaid's reference to e-mental health, will she elaborate on it now or send me some data on it later? Is it operating in other countries and what is the level of success with it?
I thank Dr. McDaid for her presentation. It bring clarity to the situation. I have two questions. As a spokesperson on mental health, I have found that mental health permeates every Department, be it education, justice and equality, victims of crime and rural areas. I came across a situation where the HSE refused to install a hoist for two mentally disabled children because it required a fixed hoist, which would require a slight adjustment to the wall and therefore the HSE ruled that it was now a matter for the county council. In fairness, Wexford County Council stepped in and dealt with it. I would have said it was not the responsibility of the county council but a matter for primary health care. Will Dr. McDaid comment on integration of services even outside the health issue?
Will Dr. McDaid comment on the integration of common assessment tools? I had a situation where it was considered that a very young child needed to see a psychologist because of a bereavement in the family, but after 18 months her mother got a letter stating that her five-year-old child would not be seen because mental health issues arising from bereavement were not covered. However, in fairness, the Minister of State, Deputy McEntee is looking into this issue. I would like to hear Dr. McDaid's views on common assessment tools.
Dr. Shari McDaid:
I will respond to Deputy O'Connell's question on whether the problem in the lack of integration arises from the separation between acute hospitals and social care in our health structures.
In my view, that is not where the difficulty has arisen. Let us look back at the primary care strategy published in 2001. Unfortunately, it had described a rather limited role for mental health. Mental health is hardly mentioned in that strategy. Mental health workers were not described in that strategy as core to the primary care team. In the 20 years since then, whatever investment has gone into primary care has gone into the core primary care team roles. Mental health workers have literally slipped off the radar and off the agenda. Primary care is where most of us get our health care. If mental health care is not integrated in terms of designated mental health workers, the whole health system is neglecting that part of an individual's health at a structural level.
Reference was made to the counselling in primary care service being limited to eight sessions. It was rather insightful to suggest that there is no other part of the health service where we ration in this way or where we say a patient can only have eight sessions. In fairness to the counselling primary care service, I understand that there is some flexibility on a case-by-case basis. However, relying on a case-by-case basis can be somewhat risky. This is because if the message is put out from the start that an individual who takes up the service will only be assured of eight sessions, the patient may believe, even from the start, that the service will be unable to answer their needs and the person may not go near it.
That point was related to the question of the limitations of and what happens when private health insurance runs out for someone who is an inpatient. I do not have enough detail to say exactly what happens to a person in that situation. Theoretically, if a person still needed inpatient care, he or she could be transferred to an inpatient bed. It should be the case that if a person needs inpatient care, as with any other health condition for which a person needs such care, the person will get as much as is required. Having said that, we want to get to a point where far fewer people end up in inpatient care. If we had more developed community-based mental health services and a good relationship between primary care and specialist mental health services, we would expect that fewer people would end up needing to take up inpatient beds.
A comment was made about the prevalence of people who have depression going to a general practitioner and being given a prescription and then encouraged to go to private counselling services. That is simply not an adequate response. The fact that such a response is even considered adequate reflects the historical Cinderella position of mental health care and the way it has not been taken seriously. Certainly, that approach should play no part in the future vision of health care. We should see something different. Any health professional should have access to mental health supports for people and they should be publicly provided. We should ensure that financial cost is no barrier to someone receiving mental health care, especially when we consider the cost of having a mental health difficulty in the workplace, absenteeism, presenteeism as well as the numbers of people on disability benefit and invalidity benefits because of a mental health condition. Economically, it makes no sense to make it expensive for someone at the start of mental health treatment, especially when this barrier will lead to long-term higher costs.
A question was asked about the regulation of counsellors. There is an urgent need for regulating the counselling and psychotherapy professions in the country because it is difficult to boost capacity in an unregulated system. We would very much appreciate it if this were made a priority.
Reference was made to e-mental health. One of the leading countries in this area is Europe is Netherlands. We are in partnership with five other countries in a north western Europe e-mental health project. One of the partner countries is Netherlands. We would be glad to supply the committee with further information on developments on the project.
I thank Deputy Browne for his question on how other Departments needs to play a role. I will offer another example of what is needed. Currently, we are piloting the best practice approach to supportive employment to help people with mental health difficulties to get back to work. There are some key barriers to people getting back to work when they have a mental health difficulty. Let us suppose a person is not allowed to drive because of the medication he or she is receiving. Moreover, let us suppose he or she is living in a rural community and there is no transport option for that person. He or she will be literally trapped at home and unable to take up employment opportunities. That is a good example of how decisions about initiatives to provide transport in rural communities need to have a mental-health-in-all-policies approach. Such decisions need to have a mental health lens in which the mental health impact is considered, whether positive or negative, of an initiative to provide rural transport. Such an initiative is needed to help people of working age to get to places of work. It is not only a question of helping those outside the workforce to get to social activities. This is a very good reason that we need a mental-health-in-all-policies approach to be considered by every Department.
I was asked about common assessment tools. The question raised related to a child not being assessed for 18 months and remaining on a waiting list for 18 months to be assessed by the child and adolescent mental health services, only for the child to be deemed ineligible for support. I am sorry for being repetitive, but again this speaks to the point that if we had adequate assistance in primary care, that scenario might not have arisen. If we had skilled mental health workers like psychologists in primary care, they could provide the necessary assessment quickly. In that way, they should be in a position to say quickly whether the child needed to be referred to the child and adolescent mental health services. That would be far preferable to a child sitting on a list, a child whose whole life might be changed by that period of 18 months without getting the mental health addressed. I hope that helps to answer that question.
Earlier, Dr. McDaid referred in passing to infant mental health services. There are some good examples but the number is small throughout the country. That is something we should seek to mainstream through primary care services as well.
Thank you very much for your presentation, Dr. McDaid, and for responding to all the questions. Thank you for your written submission earlier in the process as well. We appreciate your time.
We recommence in public session. We are moving on to a different but somewhat related aspect of community and social care, with a particular emphasis on supports for older people in the community. I apologise for the delay and am sorry the witnesses were waiting so long. Notwithstanding that, I want to extend a very warm welcome to them all. We are joined by Dr. Michael Browne, author of the report of the Forum on Long-Term Care for Older People; Professor Cillian Twomey, co-chair of the forum, retired consultant geriatrician and former president of the IMO; Ms Patricia Rickard-Clarke, co-chair of the forum and former member of the Law Reform Commission; and Mr. John Dunne, CEO of Family Carers Ireland.
In January, the advocacy and support organisation for older people, Sage, in partnership with Third Age, Family Carers Ireland and ALONE, sought submissions on the issue of long-term care for older people. The report arising out of that consultation by the Forum on Long-Term Care for Older People, prepared by Dr. Michael Browne, has been circulated to members. Dr. Browne will present on the findings and recommendations of the report and Mr. John Dunne, CEO of Family Carers Ireland, will present on the carer's perspective.
I wish to advise the witnesses that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to this committee. If they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given. They are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any persons or entity by name or in such a way as to make him, her or it identifiable. I remind members of the long-standing ruling of the Chair to the effect that members 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 invite Dr. Browne to make the opening presentation.
Dr. Michael Browne:
I thank the Chairman. By way of introduction, I would like to briefly state my position on this hugely important matter. I have been around for some time and have been involved in research, policy analysis and reflection in this area for over 30 years, first as a research officer with the National Council on Ageing and Older People during the 1980s and 1990s and more recently with the Forum on Long-Term Care for Older People. I was involved in preparing some background papers for the seminal 1988 report, The Years Ahead, and I believe the analysis and agenda for action set out in that report remain current and very relevant to the work of this committee. In some respects, what I am saying is that we do not need to reinvent the wheel.
I do not intend to go over ground members already know and are only too familiar with from their deliberations and from their own personal experiences in dealing with constituents in various parts of the country. Rather, I want to focus on what are the key areas that require concerted attention and action. My colleagues, Professor Cillian Twomey and Ms Patricia Rickard-Clarke, on foot of their respective professional backgrounds of medicine and law, will be able to provide detailed insight into specific aspects of the challenges facing the health and social care services as they apply to older persons.
I want to make the obvious point at the outset that the term "long-term care", as used in the forum, refers to the whole spectrum of support and care, not just nursing home care. Indeed, we need to be mindful of the fact that most long-term care and support is provided in the community. We are talking here about a relatively small cohort of the older population, but a cohort to which any of us may belong at some future date. That should clearly be an impetus, if one were needed, for a whole-of-society approach to this issue.
There are some important pointers to where we are now and where we, as a society, need to be in terms of providing the type of health and social care infrastructure to which we all aspire for our older population. First, there is a major discrepancy in the Irish health care system between the way care for people with acute illnesses and that for those with slow, debilitating illnesses such as dementia are funded. A core question to be addressed by society and the Government is whether this is right or equitable. Second, while there is broad acknowledgement of the principle of enabling people to exercise their will and preferences in the way care is provided, the reality is that some people who need to be in nursing homes end up there not by choice but because of a lack of appropriate community-based alternatives. I venture to suggest that most of us will know people in that category. Third, the provisions of the Assisted Decision-Making (Capacity) Act 2015 are crucial in enabling people with reduced decision-making capacity to exercise their will and preferences. The full implementation of this legislation is of critical importance, as is the enactment of legislation relating to the deprivation of liberty. Fourth, there are some very obvious instances where, without good reason, both the level of services available and the way these services are delivered fall short of what is required. For example, there is still much to be done to ensure that the design and location of nursing homes cater for key quality-of-life considerations such as links to the community, maximising individual capacity and catering for individual preferences.
Also, people's inability to access the therapies they require at a level commensurate with need impacts greatly on their quality of life, general well-being and, indeed, on their need to have to avail of expensive acute hospital services.
All the research evidence and reflected practice suggests that multi-purpose community-based units providing a continuum of support and care, such as day facilities, sheltered accommodation and nursing units, can contribute enormously to enabling people to live independently or semi-independently. These should be made an integral part of the community care infrastructure. Such models could be developed initially in locations where existing public long-term residential care facilities have been deemed to be no longer fit for purpose. Some members may be aware of facilities with such potential in their constituencies. Space might be found in such facilities for a coffee shop, a newsagent, a clothes boutique and perhaps a betting shop but other people in the community could use these facilities too.
The potential of appropriately designed housing in the provision of support and care has not been developed to date in Ireland. There are appropriate models of housing with care that have been developed in other jurisdictions and there are some in Ireland that can and should be replicated nationwide. Housing and health and social care can no longer remain parallel lines and must converge. For this to happen we need to focus as much of our energy on local government as on national government and on housing policy as much as on health and social care policy. There is a need for local authorities to take on much more responsibility for the provision of sheltered and supported housing.
More attention is required to ensure that best gerontological practice is always applied in meeting the specific nursing, medical and personal care requirements of people with complex care needs in both nursing homes and in the community. There is a dearth of appropriately designed and staffed dementia-specific accommodation, including assisted living housing and full residential care. This gap in provision needs to be addressed as matter of some urgency. It is reasonable to suggest that people with dementia are among the most socially excluded groups in society.
The question of the respective responsibilities of the State, families and individuals in providing long-term care and support is one that has not been adequately addressed in Ireland to date. I expect that Mr. John Dunne will have something to say later on this topic.
The nursing home support scheme, the so-called fair deal scheme, is a large area of health expenditure but there is little focus on outcomes, quality of life domains or on catering for the will and preference of people who require nursing home care. The current model of fee negotiation between the National Treatment Purchase Fund and nursing homes is unsatisfactory, not least because it only provides for bed and board and takes no account of different individual care, support and quality of life needs.
The forum deliberations reiterated the point that much more can be done at local community level to prevent or delay the onset of conditions that require more extensive and expensive care and support, including, in particular, accessible transport and initiatives to combat social isolation and loneliness. It is likely that a community-based social enterprise model of support and care delivery supported by the State has significant potential to target interventions at the lowest appropriate level.
Ireland can learn much from practice in other jurisdictions with particular reference to following: legal frameworks relating to people's rights in respect of long-term care and support; models of financing; the individualised payments approach that targeting resources around individuals; the optimal balance to be achieved between community-based care and residential care; the devolved responsibilities of local government or municipalities in providing long-term support and care, including housing; the integration of mainstream and specialised housing provision; and the use of assistive technology. We can learn much under all of the headings I have just mentioned.
I will suggest five key questions that the committee needs to address. What is the optimal level of support and care we wish to provide for older people with dementia and other chronic conditions? What is the likely cost of this care? How do we wish to fund it in the short, medium and long term? How do we achieve an appropriate balance between funding provision for acute hospital care and funding for long-term care? How can we achieve social and political consensus on these matters?
The areas that need new legislation are as follows: the financing of long-term care; providing a legal framework to provide equal access to community care and nursing home care; and the regulation of home care provision. There are many areas where additional legislation is not required but rather a more targeted allocation of resources based on social consensus.
There is a broad consensus on the direction that our approach to supporting older people who need care should take. This includes the need to cater for people in the community at the lowest appropriate level of complexity and the need to provide high quality residential care when and if this is needed. This requires a greater mix of accommodation choices that is currently available and the application of best gerontological practice in all situations where older people require care and support.
We know what needs to be done as it has been articulated for the past 30 years at least. Doing it demands new thinking and innovative approaches based on an ethic of solidarity that requires society to provide a long-term health and social care infrastructure that respects the inherent dignity and personhood of all irrespective of age. As an absolute starting point we need to change the systemic bias in Ireland towards nursing homes. This requires an enhanced budget for support and care in the community and legislation to enable provision and regulation for same.
Mr. John Dunne:
I thank the Chairman and members of the committee for the opportunity to present today. I will start by endorsing what Dr. Browne has said in terms of the findings of long-term care report. My role today is to broaden the agenda and consider the wider dimensions of family and community care in Ireland. Family carers underpin and enable most of the major components of the current health strategy from accelerating hospital discharge to the treatment of chronic care in the community. Whatever plans the committee recommends I have no doubt family carers will be central to their implementation and success.
As Dr. Browne said, there is a major discrepancy in the how the health service funds the care of people with acute illnesses and those with debilitating illnesses. Between 2008 and 2015 the HSE has reduced its expenditure on home care by €11 million despite the fact that the target population of older people has increased by 25%. During the same period the HSE increased its spending on residential care by €68 million. In spite of all the rhetoric the pattern is getting worse. One of the reasons is funding for nursing home care is available on a statutory basis but there is no equivalent provision in respect of funding for home care thus creating an imbalance in the system.
I apologise to Mr. Dunne for disrupting his presentation but unfortunately that is the nature of the beast.
The ageing population does not get the same credence as young children, and they are neglected. Loneliness is a big issue. Dr. Browne referred to transport, for example, and social isolation and combatting that. What other initiatives would he suggest?
It is not achievable to mandate powers of attorney and Ms Rickard-Clarke will be aware of this given her legal background. Would a more prevalent use of these help in terms of knowing the wishes of the elder person if something goes awry or he or she suffers ill-health in respect of their accommodation? What are Dr. Browne's views on retirement villages in general? We do not have such villages in a private capacity in Ireland but they are prevalent in the US. Might they help as another option for elderly people as distinct from their own homes or nursing homes?
Mr. John Dunne:
We endorse the view that primary health care must be placed at the heart of Ireland’s health service. I am president of the European Network of Carer Organisations and the way we talk about primary care in Ireland is extraordinarily limited in a European context. In Europe, the focus is not just on changing the institutional delivery of care; it is about remodelling the entire purpose of the care. Hospitals deal with acute situations, which are a problem to be solved. There is a commercial or industrial model around it. In the community, they talk widely in Europe about a goal-oriented approach to health care. The goal is not curing the condition; the goal is something that is negotiated with each individual in terms of the quality of life they want to achieve. I have never heard that mentioned in the debate on primary care in Ireland. We think that is the direction we should go and, to do that, we seek a community-based model of care, which recognises the importance of care in the home in our health system and gives statutory entitlement, among other things, to home care services, including respite.
An important consequence of our historic failures to address this is that Ireland operates a postcode lottery in the provision of community services. I assume the committee will examine this aspect. To make meaningful progress on this, we would focus initially on primary care networks. It might be realistic to say that across 90 primary care networks, there should be a consistent delivery of a bundle of services within three to five years, allowing another six to ten years to complete that roll-out at the level of 542 primary care teams. This is again a scenario where the best becomes the enemy of the good and timing is important. If this is not addressed as an urgent issue, it will be talked about forever and never happen. In that regard, we acknowledge that staff interests should be fully engaged in discussions about how this is to be achieved but one of the key principles the committee should be willing to endorse is that, in the final analysis, their interests must come second to the interests of patients. That has not always been the experience in the past.
Links between primary and secondary care remain as they were characterised in 2010 to the Joint Committee on Health and Children as "poor, resulting in disjointed and unco-ordinated care pathways, with less than optimal results for patients". Despite the HSE’s new practical guide for discharge and transfer from hospital, patients are routinely discharged from hospital without a documented care plan or the necessary supports. Carers' experience is usually a brief conversation in a hospital corridor and that is the limit of engagement on a care plan. Part of a vision going forward should be a transfer of care protocol that would prevent hospitals dumping patients on the community care system. We do not criticise the system for this. Managers are often give a few hours notice to put in place a complex home care package, which is not realistic. While we support the move to community health organisations and hospital groups, that creates a gap between two parts of the health system. A formal transfer of care protocol would be a way to bridge that gap.
Much of what is going at the minute takes a problem-oriented acute care model from the hospital to a community care setting. The hospital model is not particularly appropriate for treating chronic illnesses, which are usually characterised by comorbidities and long-term, indeterminate palliative care pathways. Palliative care came into existence under a structured pattern of development of major cancers. There are many other conditions about which people know what the ultimate outcome will be, but nobody can predict its path. That is a totally different challenge in the context of positive caring and palliative care, which is not recognised within the system. A shift to a goal-oriented approach could be key to that. The experts say it fits a wider collection of conditions, is more compatible with a team-based approach, which fits the primary care vision, and places a greater emphasis on physician-patient collaboration rather than that the patient being the recipient of treatment from the clinical side. The benefits of this approach include better balance between clinical and social care considerations and an improved approach to comorbidity and treatment of rare diseases. If they are combined, as a group, they are the third most common condition in the country. As individuals, people are isolated and left struggling as to how they fit within the system. This approach also opens up the option of examining new concepts of what is a chronic condition. For example, incontinence is more than three times as common as dementia or strokes and 1.5 times as common as diabetes and it is a major predictor of institutionalisation if it is not dealt with properly. It also leads to many secondary problems but it is not recognised as something other than being treated by throwing pads at patients and that is the end of it. This has to do with the way the care is framed.
Related to the shift to primary care is the question of shared responsibility. We welcome research findings in a poll carried about Amárach, which shows that people favour a model that shares responsibility for health care between State, the family and other actors. Currently, while that is the case nominally, in practice, all gaps in care fall back on to the families, even at the cost of carers' health and well-being. Family carers’ experience is their expertise and practical knowledge of the patient is not always taken into account by health professionals. Carers are often not involved in care planning. Care planning should be viewed as something to be negotiated between health professional, patient and carer.
The lack of clarity in sharing responsibility for health care between the State and family-community is only reinforced by the prevailing situation in which HSE acts as commissioner, provider and regulator in the home care sector. This represents a significant complicating factor in any move towards a self-directed support model of home care, which is about to begin piloting with a view to national roll-out in 2018. There is not realistic timeframe to achieve independent national oversight of home care. This situation is not entirely of the HSE’s making but it needs to be addressed as a matter of urgency on a statutory rather than administrative basis. It is only as part of clarifying formal responsibility for various parts of the health care system that it will be possible to decide, for example, whether it makes sense to have home care formally regulated by HIQA or overseen by an ombudsman-type model. For example, will we have a scenario where HIQA goes into people's homes and says they are not fit to provide care? What will be the consequence of that? We have witnessed the consequence in the formal system, where it was ignored for years before homes eventually shut down. We will not be able to shut down people's homes.
The required shift to primary care will increase the system's dependence on a hidden workforce of more than 200,000 family carers on which the health care system depends. This dependence will only increase in coming years. Today, one in 20 people in Ireland is a family carer but, by 2030, demographic changes will require one in five of us to undertake this role.
The economic case for safeguarding family care into the future is clear given that family carers provide 6.2 million hours of unpaid care each week, saving the State more than €4 billion each year in avoided health and social care costs. That is an extremely conservative calculation. Economics aside, it is socially and political significant that a majority of people want to play a significant role in the care of their loved ones when they fall ill and that they want a health system that will support them to do this.
Based on our current experience of supporting family carers, we recommend, as the committee frames its proposals for the future of the health system, that the following measures should be put in place to expand family caring in line with wider demographic changes: information campaign to promote earlier self-identification by family carers because otherwise they would not get on a proper trajectory for a sustainable care plan; integrated information, training and peer networking supports for family carers being consistently and readily available in each primary care network area within the next three years; carer assessment based on validated well-being scales and appropriate interventions to assist family carers who are being overwhelmed by their particular circumstances - CSAR and InterRAI which are tools used by the HSE are important and useful but they are resource allocation tools, which are not capable of fulfilling the carer need assessment role; availability of appropriate home care services along with person-centred and flexible respite options; and guaranteed access to appropriate respite options and provision for orderly planning and transition when a family carer becomes incapable of sustaining their caring role.
Arguably, one of the biggest blocks to people taking on a caring role is that if they are not able to keep it up, a situation could worsen. The State needs to recognise this and provide for it. There must also be proper facilities to support the health and well-being of family carers, including screening, respite cover for medical procedures and medical cards for full-time carers in receipt of the carer's allowance. The number of family carers who wait years for a medical procedure for themselves only to have to decline it when offered because they cannot put an alternative care arrangement in place is depressing. Additional measures to support people balancing a family care role and paid employment will also be important into the future. Such measures should be planned and implemented in the context of the ongoing renewal of the national carers' strategy on a rolling four-year basis. In time, this should be underpinned by a carers' Act similar to that enacted in Scotland this year.
Family Carers Ireland supports placing primary care at the heart of Ireland's health service with a view to moving towards a goal-oriented approach to treating progressive life-limiting conditions in the community. To underpin this, we are calling for the establishment of a community-based model of care which recognises the importance to our health system of care in the home and gives statutory entitlement to home care services, including respite. Any long-term strategy must address the question of restructuring and redistribution of resources and the reorientation of these to support care in the home and community. There is not much disagreement about what needs to happen. It is just that nothing is happening. It is critical that this committee's final report contributes to framing an analysis and strategy to this challenge, not least because Ireland's health care policy is confronted by a growing legitimisation crisis, which is defined as a decline in confidence in the administration functions, institutions and leadership of the system. We believe this is probably the biggest challenge facing the health care system and the work of this committee.
Thank you. I apologise for the low attendance which is due to an earlier session of the meeting running on for longer than expected and the fact the Dáil is now in session. There is also a health conference on today at which two of the committee's members are speaking this morning. I would like, however, to reassure the witnesses that their submissions and contributions this morning will be taken into consideration by the committee's research team who are working on the drafting of its report.
I would like to take up a couple of points with both witnesses. There is no doubt that at a constituency level one of the biggest issues is the lack of home care and home help services. For the first time in my experience there are long waiting lists for home care services generally. It is now common practice for people in their 80s and 90s to be put on waiting lists. I have never seen the situation as bad. I accept the suggestion, in principle, that there should be a statutory entitlement to home care services, as in the case of nursing home care. However, an aspect of that approach that concerns me and which has been alluded to by Dr. Browne is that when it comes to nursing home care, we are charging people for care in respect of which in any other setting, including acute hospital care, there is no charge. I would welcome the witnesses' view on the principle of a person in his or her advanced years who needs additional care being charged for that care, albeit after their passing. My concern is that if we move to a system of statutory entitlement to home care, there will be a proposal to charge people for that as well. I would also welcome the witnesses' views on the funding model that should be pursued in both respects.
Moving on to day care services, I have seen a few examples of pretty good day care centres. They are certainly very popular and are an important element of community care. The witnesses might comment on day care services, which is an issue I do not think either of them have commented on thus far. On the need to combine housing and health care services, I agree with the point made earlier about our not being very good at doing that. There are very strict demarcation lines between the HSE and local authorities and we need to join up thinking in this regard. I believe there is a need for a particular type of vehicle to do that. Other than simply saying both agencies need to work more closely together, we need to provide a vehicle through which there would be structured co-operation between the two authorities to achieve what is desired. There are a small number of examples of good quality supported housing for older people with ancillary services and so on, but they are the exception rather than the rule. Do the witnesses' have any ideas in terms of how this combining of services might be approached in structural terms?
The Chairman has addressed many of the issues around community and primary care about which I had intended to ask questions. The point was made that carers are neglecting their own health and failing to undergo medical procedures because they are unable to put in place alternative care arrangements. That is very alarming. Time and again we have heard at this committee, including again today, that there is a lack of leadership and confidence in the system. This is very disappointing. Reference is made on page 25 to the shortfalls in community and care services and to the State having a statutory obligation to provide support to people in nursing homes but that it is under no legal obligation to provide community-based services. It is almost certain that the inadequacy of support services for care in the home continues to be the key factor in determining the need for residential care. I understand the point that where there is action there is instant reaction and that in this instance a lack of action in terms of supporting older people within their communities will lead to their ending up in residential care and, thus, increased cost to the State. Perhaps the witnesses' would elaborate on that point and on my earlier point regarding the lack of leadership and confidence in the system which they said is resulting in morale within the system being very low.
According to the Delivery of Specialist Mental Health Services Report 2016, which was published in September, the current whole-time equivalent of staff for the psychiatry of old age is only 53%. What is the real impact on the ground of the lack of services in psychiatry of old age?
In regard to vulnerable older people, what in legal terms is required for the increased protections of people, in particular in home care situations where much of the care is now being provided by agency staff and in respect of which, as mentioned earlier, there is no oversight? The Health Information and Quality Authority, HIQA, inspects residential institutions, but there is no oversight of the care being provided in people's homes. I have heard a few horror stories in that regard from people working in the industry.
Dr. Michael Browne:
I thank the Chairman and members for their very interesting questions. I will respond later to Deputy Browne's questions. I will ask my colleagues, Ms Rickard-Clarke and Professor Twomey, to respond to the questions regarding the regulation and oversight of home care and the psychiatry of old age and its contribution, respectively.
Ms Patricia Rickard-Clarke:
On the issue of safeguarding in particular, HIQA regulates HSE and private nursing homes but there is a huge gap. I chair the national inter-sectoral safeguarding committee which was established last December. We are formulating our strategy plan for the next five years. The key issue to have is a legislative framework for safeguarding. At present, we have the HSE safeguarding service and office, but it works very much on an administrative basis and there is a difficulty where serious issues arise because it is not on a statutory basis as nursing homes refuse safeguarding officers.
Another key factor for very vulnerable old people is an independent advocate. The national safeguarding committee would like full legislation on the need for an independent advocate. Mr. Dunne mentioned the care legislation in Scotland. We need to replicate the provisions on safeguarding in the UK Care Act 2014. The UK Mental Capacity Act 2005 provides for a system of independent mental capacity advocates for vulnerable people. They must be appointed for a vulnerable person, including an older person, particularly in certain circumstances. One of these is admission to a nursing home, residential care or an acute hospital over a certain period of time. It is with regard to their protection, care needs and serious decisions being made on their medical treatment. This advocacy is independent of everybody, which is extremely important. The Support and Advocacy Service for Older People, SAGE, tries to do this, but it is difficult without a statutory framework.
With regard to equality, we have the Assisted Decision-Making (Capacity) Act, which was ratified in December 2015. We had a commencement order on 17 October establishing the decision support service and we will ratify the UN Convention on the Rights of Persons with Disabilities before the end of the year. This all means rights and equality. For older people in particular, we do not have these rights and equality but we will ratify the convention and we have legislation which states the wishes of the person are extremely important. We have a lack of equality between acute hospital care and long-term care, and the choice and wish of people to decide where they wish to be. If we are to sign and ratify the convention we must step up to this.
Another piece of legislation coming before the Oireachtas by the end of the year to complete our obligations under the UN convention is the equality/disability (miscellaneous provisions) Bill regarding the right of people to decide where they wish to reside. We do not have any procedure at present. The European Convention on Human Rights has very clear provisions on prisoners who are charged and people who have been involuntarily detained for mental health reasons, but we have no procedures in law and are completely in breach of the European Convention with regard to very vulnerable people who are put into nursing homes against their will and who do not have a choice on where they want to live and their supports. When we have this legislation and we ratify the convention we must find the budget to step up to the mark.
Professor Cillian Twomey:
I thank Deputy Browne for the question. If consultant manpower levels are inadequate for consultants in old age psychiatry, as they are, there is a deficit in the service provision. It is unequally distributed. This applies to care of older people in general and care of people with chronic illnesses of all ages. What is required is a multidisciplinary package. The straight answer to the question is there should be more consultants in old age psychiatry.
I was appointed as a geriatrician in 1979 and I was the sixth geriatrician appointed in the country at the time. There are now approximately 110 geriatricians in Ireland. At a time when everyone is going berserk about how awful things are, it is fair and right one should acknowledge there have been some improvements. There is an endless demand for health care, and no matter what the committee comes up with at the end of its deliberations it will still not satisfy most people because this is the nature of the service, but there is a fundamental inequity in what is done to people with chronic illness vis-à-visthose who are acutely ill. If I get a stroke, go to hospital, get thrombolysis, then get a complication with my heart, go into heart failure, get kidney failure, need dialysis and ultimately need a transplant, I will get all of this fantastically well serviced in the country, and we need to remind ourselves of this. No matter what my age is, this is what I will get. However, if I survive until 75 and get a stroke, having never once cost the State anything in terms of health care, and I am incapacitated by the stroke, the first questions I will be asked is when I will go home or what home I will go to, what property I own and about my money. This is completely and utterly fundamentally flawed. There is a basic fundamental inequity in the way we approach illnesses in people with chronic disease as opposed to acute illness, and the committee cannot avoid addressing this question.
The question how this can be dealt with was asked and it is a fair question. All of us have a responsibility to provide for the needs of all people. It is a combination of general taxation and social insurance. This is what it should be. If a 20 year old betting man was asked to pay more tax to look after Johnny McGuirk or Cillian Twomey if they get a stroke in 100 years time, his answer would be no. That man would not believe he would be affected because 90% of people who reach the age of 80 are healthy, but this is not the point. A civil society in my view has a responsibility. We do not say this sufficiently and we give lip service to choice. People are sent into nursing homes because there is nowhere else to go. Why is it they are either independent at home or in long-term care? The village-type idea promoted in this morning's presentation has much to commend it. We have given huge financial incentives to build nursing homes. Why do we not incentivise more humane alternative supports in the community for people, which would include, as Dr. Browne said, such facilities as a shop and a betting shop so it becomes an integral part?
The Years Ahead report in 1988 prescribed all of this. The committee will write a report which will tell us what we should do in 2016 and onwards. I invite committee members to read The Years Ahead. It speaks about integration and linking housing with health, transport and social supports. It states it is not just about illness and medical issues but about social issues. It is all there. An implementation plan was put with it and it was priced. Dr. Ruth Barrington was its lead author. We are honours graduates in this country at reports. We are the greatest on earth at reports. I would like to see one or two of them implemented. The Years Ahead contains an awful lot of what would be good for chronic illness in our society.
Mr. John Dunne:
I will also deal with the funding question. It is a fact that many carers defer medical treatment and as soon as the person they are caring for dies or goes into long-term residential care they then begin to get their own health looked after. It is insane, if we think about it, that someone saving the State so much money is allowed to encourage their own health to deteriorate to a point where there are two charges on the health budget instead of one saving.
That is the fact, however, though the system does its best. I was approached recently on the subject of whether we could encourage carers to be more active in screening programmes. That would be a good thing as it would be preventative, but if they are screened and told there is a problem, there is no way the system can step in and do something about it. It would be a small example of joined-up thinking and a small part of what we see as the ethos of goal-directed primary care. We are 1,000% in favour of the retirement community model because it includes day respite and short respite breaks, which are part of the live-in community. Independent living in retirement communities is an excellent part of the total spectrum of care in the home.
If somebody provides intensive care at home and is about to go into hospital themselves, the only option is for somebody else to come into the home on a live-in basis, which is ideal but very difficult to achieve in practice, or to have short-term respite break beds. In recent years most such beds have been displaced. They might have been shut down because the facilities in which they were based were deemed inadequate or they have been converted into step-down beds for acute hospitals. There are large chunks of the country where one cannot get a respite bed anymore. In some places there is one building with maybe four beds. It is effectively rationed out and one week it is for adults, one week it is for children and one week it may be for the elderly.
I was asked about costs and the funding model. All community health care organisations are roughly the same size in population but CHO 9, Dublin north, accounts for between one quarter and one third of all home care packages in Ireland. If there are waiting lists in Dublin north, there are serious problems.
Mr. John Dunne:
Yes. We latched onto the problem with fair deal when we came across cases where a person was in extremisand a health service manager said he or she could not give people home care support but could put them in institutional care. A person looking for €200 to stay at home was offered €1,000 because there was a statutory entitlement to that funding. Four or five years ago we were saying this was insane and we have said it every year since. It is great that people are now beginning to focus on it but we did not set out to propose a fair deal model for community care. We said that by introducing fair deal with a statutory basis for one sort of funding, we have destabilised and created a perverse incentive within the system. If somebody who qualifies for fair deal could be offered a package of home care which is cheaper, would it not make sense to allow fair deal funding under the legislation? Fair deal funding has ballooned, and while it is all very well to have a statutory entitlement, if the funding is not in place, we are left with a big waiting list. Under fair deal there was a statutory entitlement and a big waiting list until the funding was increased and there was an improvement in supply. In community care there is no statutory entitlement but there are still waiting lists. The key to it is the funding level. We suggested accessing the fair deal funding if it was going to be cheaper. The magic number is €41,400 per year. In other words, that is the net cost of fair deal after the family contribution under the scheme. This would provide five hours care in the home per day, seven days per week, which is approaching a Rolls-Royce home care package, for the same cost and with no contribution required.
An extension to or variation of the fair deal scheme to community care has been suggested. The fair deal model levies savings, which is fair enough. It also levies income, but it seems a bit crazy to reduce the income going into a house where the house is providing the care out of that income. The house is also being used as a centre of care so it is difficult to understand why some of the value of the house should be consumed to fund it. The funding model for fair deal does not look like a very good fit except, perhaps, in the case of assets. We have consulted widely on this and the feedback from carers has been that if they could be guaranteed the quantum and quality of supports they needed, they would be willing to look at any arrangement. They also said that, as things are at the moment, they have zero faith in the capacity of the system to deliver it. At the moment they would see any move in the direction of front-loaded charging as a grab on funding with no assurance of the quality of what would follow. Carers recognise the reality of budgets and challenges but it does not make sense to reduce their income when they are trying to do a job. The fair deal model, as it stands, would not work. A modified fair deal is not out of the question in principle but it would have to be backstopped by categoric assurances of the quantum and quality of the services that would be provided once somebody started paying for them.
Professor Cillian Twomey:
Can we call this something other than "fair deal"? If we say "fair deal" often enough there will be a presumption that something fair is going on but there can be absolutely nothing fair about fair deal until we apply it across the board. There is no will to do that and I am not advocating it but there would at least be consistency about it. I agree with Mr. Dunne that there are differences between supporting somebody at home and putting a person in residential care. Mervyn Taylor is fed up of me saying that the nursing home support scheme, NHSS, is a clever, disingenuous label which I call the "unfair deal". It has established itself in people's minds as something fantastic for the senior citizens of this country but it is, in my view, a disgrace.
Ms Patricia Rickard-Clarke:
Mr. Dunne spoke about regulation of home care. The 2011 report of the Law Reform Commission on legal aspects of professional home care dealt with how home care could be regulated. It contemplated HIQA setting up standards equivalent to the standards it has for nursing homes or residential care for people with disabilities. The commission also set out the different levels of care. Assessment of need is one but more important is a consideration of the outcomes, and it suggested a review from time to time as people grew older and their needs changed. The commission drew attention to the different levels involved, from low-level care such as companionship care - and many are in nursing homes because of social isolation - through intermediate level care where a person is helped with bathing and other things, to the advanced level involving nurses. These things would be reflected in the professional staff required. The service provider would be regulated and the recipient would contract with the service provider. One of the great difficulties of home care is that families, or the older person living on their own, are struggling to be the employer but that does not work. There should be a system whereby the HSE or private providers are regulated. The principles set out in the report, such as independence and choice in quality care, are very clear. The quality of home care goes from zero to very good and there is no regulation which gives rise to issues relating to safeguarding and abuse.
Deputy Madigan asked about EPAs. We have had enduring powers of attorney legislation since 1996.
We have since had a Council of Europe recommendation on people's right to autonomy and self-determination and the recommendation that all states have detailed legislation on enduring powers of attorney and advance health care directives. We have had legislation in place since 1996, but there has been no national campaign on it. In the Assisted Decision Making (Capacity) Act we have reformed legislation on enduring powers of attorney and, thankfully and at long last, a legal framework for advance health care directives. While advance health care directives have been recognised by the courts, for the most part they were disregarded in practice because we did not have a statutory framework. A commencement order to set up the working group on advance health care directives was made on 17 October; therefore, that work has started, which is very welcome. One of the causes of great delays in the discharge of people from acute care settings is the conundrum that a person's wishes are not known, there are no formal plans in place and a family are arguing with different views on the matter.
In addition, under the Assisted Decision Making (Capacity) Act the office of director in the decision support service has now been established. The first function of the director specified in the Act is to conduct a public awareness campaign. We must have a national campaign on EPAs and advance health care directives, as well as a campaign to generate public awareness of what we must all do to plan for our future. Of course, the office will also supervise the area in which in the past there was a lack of safeguards for existing EPAs. That issue is dealt with in the new legislation; therefore, the role of the director will be very important. Anybody who wishes to make a complaint about any of the intervenors mentioned in the Act such as an attorney, a designated health care representative, a decision support person and so forth can make it to the director. It does not involve a court application. At present, it involves a very expensive court application under EPAs. The director can carry out investigations formally and informally and can refer a matter to court, if necessary.
There is a final point to be made on EPAs which is extremely important. I have heard people say many times that a solicitor is required and that it is expensive to do. They do not realise the Free Legal Advice Centres can undertake EPAs. That is very important and should be promoted in order that people who ask about the matter in a community centre will be told where they should go to avail of the service or that there will be a person from FLAC visiting the community centre to facilitate those who wish to plan for their future.
Dr. Michael Browne:
I will return to the Chairman's question on funding and make two comments, one of which is that we must look at the issue in a general way, but it is also something that should not be landed on people at a stage when they require high level of support and care. It is something that must be thought about and planned for as a society. On that basis, we must revisit the Mercer 2002 report on the financing of long-term care, in which a number of aspects were examined and considered and some proposals were made. We do not have time to discuss them today, but it would be worthwhile for the committee to consider the report. In other words, everybody knows from an early stage that there will be the question of the funding of their long-term care and there should be a system in place that is fair and equitable to do this. My point is that it is an issue for society.
The second point made was related to the housing-health interface. It is very tricky. It is tricky primarily because of the type of administrative system in place in Ireland, under which there is silo funding from the top Department down to local government or the HSE. One way to deal with this is in the context of local government reform, an we have mentioned regularly and we have been asked by the OECD and various other bodies to examine it. Some type of administrative structure to enable the pooling of resources at local administrative level, within which housing and health services would be integrated, is the only way by which we will be able to deal with it. It is tricky and a challenge, but we can do it.
I refer to the community care service and the dearth of supports and services. Obviously, it is evident that this dearth of services creates problems, but I wish to refer to simple things such as easier access to physiotherapy, occupational therapy and house adaptations. These adaptations might be relatively minor; they might involve the provision of grab rails, accessible ramps, toilets and so forth. At that level there is great potential for more interventions at relatively low cost. In that regard, there must be somebody in the community - I am not sure whether it would be the role of the social worker or perhaps some other person - to pull these aspects together at what I term the lowest level of complexity.
A couple of points were raised by Deputy Josepha Madigan. One concerned initiatives to combat social isolation. The fundamental and crucial issue is that there is premature disengagement of people from society. Why, as a society, do we communicate the message, at a very subtle level, that somebody no longer has a contribution to make either to the workforce or the community? We must deal with that issue at a fundamental level because people have a significant and enormous contribution to make on an ongoing basis. Many make it, but some do not.
On the question of retirement, I am a little concerned about the notion of segregation. While I see the potential, we used to have a lovely concept - I am speaking about the ideal - which I believe was mentioned in a report some years ago from the Department with responsibility for the environment. It was a report on building sustainable communities. We should hold in so far as possible to the concept of sustainable communities, inclusive of everybody, within which we can have the concept of the multi-purpose unit. Three aspects of that vision are important. We must make provision for what might colloquially be termed people who are a "go go", people who are a "slow go" and people who are "no go" in terms of mobility. That is where we need to be and the type of concept we should move towards.
There is the question of leadership in the system which was raised by a few members. We probably need innovative and inspirational leadership, but I have no idea from where it will come. It can come from either a political level or an innovation level from a charismatic individual, but we need it. We must change the narrative and the discourse. We need to regard older people, even those with dementia or other chronic conditions, as essential and integral parts of communities.
That is a very appropriate note on which to finish. I thank the delegates for their attendance, presentation and responses to our questions. We very much appreciate their time and expertise.