Oireachtas Joint and Select Committees
Wednesday, 5 October 2016
Select Committee on the Future of Healthcare
Citizen-Centred Health Care: Civil Engagement
I remind those present to either turn off their mobile phones or place them in flight mode. This is our second session and we are meeting representatives from the Seanad Civil Engagement group, who will make a presentation on the importance of a citizen-led approach to integrated care. At the outset, and as a formality, I remind Members 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 by name or in such a way as to make him or her identifiable. I welcome the members of Civil Engagement and invite them to make their presentation.
I thank the Chair for the invitation to present to the committee. I fully support the aim of this committee to set out a ten-year, cross-party vision for the future of Irish health care. I have been following the work of the committee closely, trying to keep up with all of the papers presented thus far, which is a challenge, as well as preparing my submission.
Before I get into the detail of the submission, I would like to tell members a bit about myself and my background. I am not an academic, although I did try to provide evidence and examples to support the contents of my submission. I am coming from the field, so to speak, as I have worked within the system for a number of years, trying to make it work, sometimes successfully, other times not. That is what I am trying to bring to the party this morning. My professional experience includes a chief executive role with the Alzheimer Society of Ireland, although I have stepped down from that position now. I also worked with the Cope Foundation, an organisation that supports people with intellectual disabilities. I worked with the Cork Simon Community for eight years providing support to people who were homeless. I also worked with the Daycare Trust in the UK in the area of child care and early years education. In addition, I worked as an advisor to Margaret Hodge, MP, for some years. I have worked in many different parts of the system. I am a qualified social worker, have an MBA and recently became a certified practitioner in change and consulting, which, in a sense, is what this committee is all about, that is, dealing with the stuff that seems obvious and really easy but which is so hard to do.
Stark health inequalities also exist for other marginalised and minority groups. The average life expectancy of people experiencing homelessness is 47 years for men and a shocking 43 years for women. I worked with the Cork Simon Community for eight years and when I walk around the city now, I do not meet the people I worked with in the past because most of them have died. Homeless people die young. Data shows that 60% of lesbian, gay, bisexual, transgender, intersex, LGBTI, people have seriously thought of ending their own lives, with almost half of these considering it in the past year. Younger LGBTI people are the most vulnerable in this regard. An estimated 30% who have attempted suicide did not access mental health services, with cost, stigma and lack of understanding of LGBTI issues cited as the main barriers. These barriers can and must be overcome. These are the problems, most of which we already know about. It is really important that the committee examines the gaps in access to health care for these groups of people, as well as looking at values. Health planners need to hear the voices of these marginalised groups, who live with the effects of health inequality.
In my submission, I propose the establishment of a pilot version of NHS Citizen and Healthwatch UK and I would be happy to answer any questions members may have in that regard. In addition, area-based, inclusive, stakeholder based health care planning forums should be established on a statutory basis for ongoing population planning. These would allow the voice of the citizen to be heard loud and clear in the planning process. I have seen at first hand in the UK how effective these can be. When I was working on child care, each local authority area had to produce a plan that was informed by children, parents and others. That plan was attached to targets and local authorities could not get funding until they submitted their plans. I have seen how well such planning forums work. The homeless forums that were set up in the early 2000s were also very effective. However, such forums will come and go unless they are set up on a statutory basis and sometimes what is missing from them is the voice of those representing people with disabilities or dementia, for example. These must be included in the forums and actively engaged with. I know that GPs from the Carlow-Kilkenny model of care made a presentation to the committee recently about their version of a health care planning forum. There are embryonic versions of these forums in existence already and they must be built upon. This is a practical suggestion and, as I have said, I have seen them work.
It is based on the idea that one takes what one gets rather than what one needs or wants. In many cases, availability of services are determined by a postcode lottery. Regardless of whether citizens are living in Donegal or Donneraile and whether they have dementia, Down's syndrome or depression, they should be entitled to the same level of support that they require based on their needs at that particular time, and those needs may change. The supports people need at the early onset of dementia are very different from the support they need at the later stage of dementia. Supports need to travel with a person's needs as they develop.
There is no clear vision or plan in the area of social care. People working in the HSE, and people like myself who are on the other side, work hard but provision in this area is not coherent or joined up and it fails citizens. It undermines people's dignity. We were at the launch of the alliance of organisations supporting the call for home care provision. Incontinence pads are now being rationed but that is not good enough and it is not necessary in a country like ours in this day and age.
Poor social care provision shortens lives and life expectancy. Up to now key areas of social care have been left by the State to poorly funded and, sometimes, poorly governed charities. As a result, very often citizens have to rely on services and supports which require fundraised income to operate. There are well publicised examples of core services for vulnerable people being delivered by charitable organisations that can be under question. Social care services for vulnerable people must be transparently commissioned, adequately funded and properly governed.
While I recognise that the State invests in social care, the existing spend is inflexible. I was responsible for an organisation and had very little scope to innovate and change things in response to people's needs. It was very fixed and tied up. There is little room in the budget for the expansion of services or even innovation. Of late, there has been some welcome moves towards personalised budgets in order that people can get control of their money and thereby decide what they want to do and how they want to spend it. I have been appointed to a reference group in that regard. On the whole, the budget needs examination and increases in key areas are also needed.
We should think of social care infrastructure as we would think of a transport system. For an effective transport system to operate, we need all the parts to connect and work together. We are unfortunately missing many pieces of the social care infrastructure. I am sure my colleagues, Senators Dolan and Black, will expand on that. Just as we are retrospectively joining up the Luas lines at huge cost and upheaval, we also need to join up the social care infrastructure to create webs of care. In the long run, just as in the case of the Luas lines, it will be a worthwhile investment.
One key part of that infrastructure is home care. A properly functioning home care system would and should serve people with a variety of support needs, including, but not exclusively, people with dementia. To take the example of that group as I am close to it, there are currently 55,000 people with dementia in Ireland, 63% of whom live at home and want to live at home. The national dementia strategy, co-funded by Atlantic Philanthropies, promised to provide 500 home care packages, a modest enough expression in that strategy. To date, only 72 people have benefited from those. That is 72 out of 55,000 people. According to the Department of Health, 25% of people in acute hospitals have dementia. Keeping them in that setting makes no sense. The national dementia strategy, just like A Vision for Change or Time to Move on From Congregated Settings and many other excellent plans in the social care sector, has become a victim of Ireland’s implementation deficit disorder. We have good policy but we do not implement it.
In one week in August there were 31 people in three hospitals, ready to be discharged, who were waiting on a home care package. Over the course of the entire month of August only one home care package was provided in those hospitals. As a result, there were 30 delayed discharges. That is economic madness. An intensive home care package costs only €1,000 a week, while a stay in an acute hospital costs approximately €1,000 a night. If we scale that up over the year and across the State, the savings are significant. The Minister, Deputy Harris, told the Joint Committee on Health and Children last week that there are currently 629 people whose medical care is complete who are still in hospital because other necessary care, support or accommodation has not been provided. Remarkably, there has been a cut in the level of funding for home care over in recent years in spite of the need for it. Funding for it in the period from 2008 to 2015 has reduced by €11 million. That is despite the need, demand and unequivocal citizens' preference for it. A study published by UCD, Age Action, The Alzheimer Society of Ireland and the Irish Association of Social Workers incontrovertibly shows that people want to stay at home rather than being in other places. Approximately 22,000 thousand people have signed The Alzheimer Society of Ireland's petition on home care, which signifies there is massive support for this.
A similar picture could be painted in the area of people with disabilities, people with chronic conditions and older people. The lack of home care and other social care provision has many knock-on effects. People are too often forced to give up employment to take on caring duties full time. This burden predominantly falls on women. The 14% pay gap and 37% pension gap can be partly explained by women dropping out of paid work to take up caring duties because they simply had to do so.
Looking to the future, if we accept that the social care structures are not fit for purpose for today, the time for action is now. We have an ageing population. I have described what is happening in the here and now but matters will only get worse as our population ages. We should be celebrating the fact that people are living longer and that people with Down's syndrome are living longer, but they do not have access to early onset dementia supports, which many people in that group may develop. The fact that people are living longer is a cause for celebration, and not for angst, but we need to provide for them.
We need a comprehensive plan for social care, underpinned by compassionate values and rights, and informed by population planning and health forums. We need to dismantle old systems and shut down many of the institutions. I accept this project may be beyond the scope of this committee, and it may require a committee or commission in its own right. We must make it happen because if we do not adequately examine social care, all the rest of the work of this committee will be put in jeopardy. As a crucial first step, over the lifetime of this Government, we could significantly invest in home care. Such investment in home care must coincide with the introduction of robust regulation, a legal entitlement to guaranteed access and proper workforce planning. We do not want to have people providing that care at the lowest level of care. It is skilled work. When I visited the Brothers of Charity in Liverpool, I learned that 90% of its workforce were on the minimum wage. We need to do better than that for the people providing this skilled work and we know that it will result in long-term cost savings. We know there is a demand from citizens and we know that it is key missing piece of the social care puzzle.
The Taoiseach said this week in the Seanad that he wants "an Ireland that looks after its people from the time they come into the world to the time they leave". A transformative investment in home care will go some way to making this vision a reality. I thank the members for this invitation to appear before them and I welcome their questions.
I thank Senator Kelleher for her comprehensive presentation. I also acknowledge the excellent submission she made to the committee some weeks ago. It is very good and I thank her for that. We will also hear from Senators Black and Dolan so who would like to speak first?
I thank the committee for inviting us to come along today. We were all delighted to come. I want to speak on a specific issue of concern. I have worked in the addiction area since 2003 during which time I have learned a great deal, particularly from family members, about the impact of harmful drinking on families and particularly on children. We know that we have a huge problem with alcohol. Three people a day are dying from an alcohol-related illnesses, which is scary. Alcohol abuse costs the Exchequer €800 million a year. Approximately 1,500 hospital beds a day are occupied by people with alochol-related illnesses. Harmful drinking is a major issue.
I want to talk about the hidden harm element. The wide range of harms that are caused to children as a result of parental alcohol misuse is known as hidden harm. As the harm is often not publicly visible, that means that those children are often not known to the appropriate services and they suffer harm in a number of important ways that can impede their physical, emotional and social development.
These children can suffer in silence and they often to do not know where to turn for help. The impact of a parent's harmful drinking has a deep and long-lasting impact on their lives that may not fully emerge until young adulthood and beyond. For a child, harmful parental drinking can shape their every moment from the time they wake up to the time they go to bed. A child worries about whether his or her mam or dad will drink that day, what mood they will be in and whether he or she will go to bed hungry.
A child can take on the role of a parent in the family, making sure brothers and sisters are fed and getting them dressed and out to school. In the most severe cases, a family situation can deteriorate to the extent where children are emotionally abandoned, physically or sexually abused or neglected with dirty nappies going unchanged and children going without regular meals.
I have conducted some research on this matter and found an amazing women called Dr. Stephanie Brown who works at Stanford University. She talks about the developmental impact of parental alcohol misuse on children’s attachment and identity formation and the impact of alcohol misuse related trauma on all aspects of development. The earliest research emphasises the link between harmful parental drinking and mental health issues. This is the area in which I am specifically interested. We have found that children who are reared in homes where there is harmful drinking have a high rate of mental health issues and then we look at our suicide and addiction rates in Ireland. Children can go on to have alcohol or substance misuse problems themselves. Many researchers have found that children with parents who misuse alcohol can be more likely to experience symptoms of anxiety, depression or both, anti-social traits, relationship difficulties, behavioural problems and alcohol abuse themselves.
Children living with this trauma may develop a sense of self that is equated with defence. These defences are designed to keep the enemy out and to minimise anxiety, fear and the threat of humiliation. The defensive self or false self creates a deep sense of inauthenticity and a barrier to connectedness with others that exacerbates isolation and loneliness. The defensive mantle tends to be brittle, inflexible and self-reinforcing, with the potential to break down under stress.
Over time this cumulative trauma can engender trauma related symptoms such as depression, anxiety, hyper-vigilance, low self-worth and somatic disturbances such as head and body aches, chronic tension and so forth. It is shocking when one considers the evidence for all this. These symptoms, if left untreated, can become full-blown post-traumatic stress disorder, PTSD. They can lead to all sorts of life, learning, health, psychological and relationship complications and a desire to self-medicate. This is how the insidious baton of addiction gets handed down through the generations.
The problematic use of alcohol and other drugs is a complex issue and continues to be one of the most significant health and social challenges facing society today. Approximately one third of the people are engaged in harmful drinking. I am not talking about addiction but a binge drinking culture. This issue affects families and communities. It can have serious implications for the welfare and safeguarding of children from conception and throughout their lives. Children living with the everyday experience of the problematic use of alcohol may experience incipient or traumatic neglect, physical and emotional abuse, a lack of appropriate nurturing and adverse outcomes that may affect their adult lives.
I do not want to be repetitive so I will talk about what we can do to prevent this problem arising. I have seen the effects of alcohol and substance abuse through the work that I have done, in particular with families. Therefore, I know it is important that we have effective prevention and early intervention for children living in homes with alcohol or substance misuse. The children who live with parents who have drug and alcohol problems are among the most vulnerable in society. It is imperative that we ensure the best possible start in life for every child through effective prevention and early intervention.
We must also establish a holistic, recovery-based education and therapeutic programme for the adult children of alcoholics. There is a successful programme in America and there is evidence available to prove how well it has succeeded. The development and maintenance of a therapeutic alliance, or a quality treatment relationship based on mutual respect, is an essential component of effective treatment for individuals who are adult children of alcoholics. Empathy, respect and belief in the individual's capacity for recovery are fundamental service provider attitudes and values. Peer support and continuing care is also an option.
This issue should be recognised. The culture of drinking in Ireland, particularly harmful drinking, has an impact on society in terms of mental health, addictions and physical harm. There is an evidence piece in America called the adverse childhood experiences study or ACE for short. It centres on the impact of dysfunction in the home and how it can have an impact on people on a physical level in the form of stress related illnesses like cancer and heart disease. It is important to consider the future of health care and recognise that alcohol and substance abuse play a huge role in the lives of children. The impact is not recognised in health care at the moment. That is why funding should be made available for people who have been impacted by parental alcohol and substance misuse. If we do so, it will prevent the legacy of mental health and addiction issues, and even physical health issues, that have been passed down through the generations.
There should be a consensus that integration between mental health and addiction services is sorely needed and long overdue. Again, we can talk about dual diagnosis. There is now a pressing need for transformation to recovery oriented care in both systems. As my colleague, Senator Kelleher, has said, we must all work together to provide intervention services. I hope I have not talked for too long and I am sorry if I did so.
I wish to endorse the opening remarks made by Senator Kelleher on the valuable work done by this committee and the impetus it has given to a vital national issue.
I welcome the opportunity to make a short presentation to the committee. If people are confident that we have a robust and comprehensive health service, they will have the confidence to participate in the economic and social life of the country. This matter is bigger than health care. It has to do with having a sound fabric of health and active people in society, as best one can achieve doing so.
I will make a number of points that struck me having spent nearly four decades involved in the disability movement in one way or another. Disability, disabling conditions and chronic illnesses are not discriminating in who they affect. They cut across all areas of society: the young and old, people living in urban or rural regions, the well-off, those experiencing poverty and those who are close to poverty. Therefore, disability is major issue for Ireland and is not a sectoral issue. The health status of a population is critical to a society's economy, social development and achievements.
I have observed that what we now term as disability, and I include mental health, is very different from four decades ago. It would be useful for me to refer to disabling conditions. We know so much and advancements have been made in health systems, diagnostics and all the rest. There are many conditions that can be kept under control by a range of treatments and whatever. Therefore, we must realise that we are all on a continuum between being wholly healthy and having issues and some very severe issues with restricted ability and reduced functioning. It is important that we realise there is no such thing as them and us. It is a fact of life that we are all on that slope and we should not be upset about it either as it is life.
Some people are born with disabilities but they do not make up a huge number of the overall population. Many people acquire disabilities over the course of their lives for a multitude of reasons such as injury, self-harm, lifestyle, a predisposition or what we might simply call, perhaps not too correctly, ageing. Some people can suffer more than one condition. For instance, there is a huge correlation between the number of people with Down's syndrome who will go on to develop a type of dementia.
We did not know that 30 years ago because previously these folk did not live past 30 years of age. It is to be celebrated that they are living into their 40s, 50s and 60s, but we are wrong if we do not plan for people having longer lives and the other things that can happen to them. While people with disabilities and disabling conditions are a minority of the overall population, they are a majority in the use of health services. It is not just a numbers game. Some people rely on health services more than others, and people at a certain point in their lives certainly will.
Advances in information, knowledge, technology, treatments, earlier diagnosis and understanding of causal factors shape the environment in which we now operate. I believe we are not fully, or anywhere near, exploiting the opportunities and potential which all of these bring. There are still crazy situations where somebody almost uses a pigeon to take a letter from one place in the health services to somebody else. We are not exploiting simple things such as communications technology and the like. An improved health service will mean more people will survive birth, which is a good thing, but we must accept that there will be some babies and children with severe and complex needs. Let us face that fact and plan for it. In addition, as I mentioned already, people with such conditions will live longer. The complexity of health needs to be catered for will clearly also increase. These are issues we will have to accept as side effects of something that is good, which is more people being born and more people with disabilities being able to survive them and live longer, and confront that.
The future of health services must focus on, and invest strongly in, the areas of prevention, early intervention and amelioration, and the committee heard Senator Black speak about that in a particular context. If we do that, it can help to dampen further demand on health services. Getting in early and supporting people is the smart thing to do, even from an economic point of view. More generally, the current structures and delivery systems of services and the way society thinks about disability and chronic illnesses exacerbate rather than alleviate the associated problems. Our approach to how we plan services and think about things is dysfunctional and very unhelpful. Services must be remoulded so that every person, in so far as possible, is able to self-manage and have a sense of control over their condition and living circumstances. Health professionals must be better able to optimise working in partnership with people, their families, support networks and the groups that work with them. Primary and community care infrastructure is critical to all of this.
Beyond that, it must be recognised that the success of the health and care services in supporting and responding to disability and disabling conditions is significantly dependent on factors outside of the health service. That is one of the shifts in mindset that is required. Events outside of the health arena have a huge impact. I recall meeting a man 36 or 37 years ago, who I still know, who is physically disabled and in a wheelchair. He could not push himself around and did not have a motorised wheelchair. He went to a special school and graduated from there to a special workshop in the same organisation. I lost contact with him over a number of decades, but now he has a motorised wheelchair. He lives on the north side of Dublin. Dublin Bus and the bus stops became accessible. We take the use of public transport for granted, but that meant he could get from his home to any place around the city when and how he wished. He could get to his place of training. In fact, during that time he re-trained with the support of the organisation. He went to a college of further education that was accessible and near to him. There are a number of fortunate accidents here, and that is what we do not need because we must create the situation so this can happen. That man is now employed in that organisation. Little things, such a decent motorised wheelchair under his bum, an accessible public transport system and accessible spatial infrastructure, trebled and quadrupled the value of the supports he was receiving. That is what can be won here.
Accessible and available transport, including public transport, accessible public buildings and spaces, accessible information or information in accessible formats for people who are blind, deaf or have other conditions, good and appropriate housing, access to education, training and employment and sufficient income are equally as important as focusing on the health and care side. Both must be progressed if one wishes to maximise the results and returns. These areas must be planned for and improved in tandem with the health and personal social services. Every Department and public body has a role to play in creating the tapestry that will optimise the health and well-being of all of our people and maximise the participation of people with disabilities and disabling conditions. The health and well-being of all is a core matter for all of the Government, not solely for the Department of Health and the HSE. We can criticise the latter, and I am sure we will continue to do so, but it is and has been wrong to see all of the issues as being in the health area. The other aspects, such as education, training and access, are pieces of the jigsaw that have not been playing their part.
In conclusion, disability is not a sector in Ireland. We are all going in that direction and if we are not, our loved ones are. Nobody escapes this in one way or another. Consider it as making Ireland open to the broad spectrum of its people as they are and as they will be. It will be a very hopeful situation if we can do that. A small matter on which I have been working is the departmental strategy statements. It is important to get something into them, when they are being compiled under the new Ministers, related to this agenda of access for people with disabilities and disabling conditions. Every Department has something valuable to offer here. Rather than them saying they will see if they can do a special programme, the ambition must be to ensure that everybody can participate as they are, regardless of the shape they are in and their abilities.
There are three elements. What happens outside of the Department of Health is as important and in some ways more important, because that is where one gets the multipliers and the real outcomes for people to be able to live. People with disabilities, their families and support groups should be supported and encouraged to be more at the centre of managing, controlling and being on top of their lives. Third is prevention and early intervention. There is no doubt that when we started slapping people with penalty points and raised their insurance costs fewer people died, thankfully, and many other people did not become disabled, with their families caught up in that, who otherwise would have. That is because of something that was done somewhere else.
I thank the three witnesses for their comprehensive presentations.
The committee is very pleased to have the benefit of the group's experience and expertise on the front line. There is no doubt that the Civil Engagement group has a huge amount to contribute to the work of the committee and we very much welcome the presentations and Senator Kelleher's earlier submission.
Most of the material the group has provided today feeds into the work of the committee. I would like clarification on a number of points. Senator Kelleher referred to stakeholder-based health care planning forums. We have been looking at the administration of health quite a bit, the geographic differences that exist and how health services are organised geographically. What does Senator Kelleher have in mind in terms of the Irish situation? What kind of area are we talking about?
I have a question on the role of charities. It is quite a problematic area in many ways and there are issues about accountability. Those questions were raised with us by Dr. Stephen Kinsella when he appeared before the committee. What is the Senator's opinion on the role of charities? What does she recommend to make the sector more coherent and accountable?
I have worked for charities both in Ireland and in the UK. Charities have stepped into the breach when the State has failed, but very often the State needs to take up where the charities began. Very often they have had to carry on and carry the can because the State has not been able to step in or take up its role. Charities have a great role to play in advocacy and innovation, but whether they continue to be a main provider will depend on the charity. A good commissioning framework is the way to deal with it. Charities are as good as what they can deliver to people. The confusion has arisen because charities have been advocates and have suddenly become providers. Some are well intentioned but not geared up to be the kinds of providers we need in a regulated and standards environment. Good commissioning but not a race to the bottom commissioning is the way it will be dealt with. It can be seen in the UK. Charities are coming and going based on what the consumer needs. Without a charitable sector in Ireland, some people would have nothing. It is now time to take stock, say the situation is historic and ask what the citizen needs. If a charity, private provider or the State can provide these services, it should be the right way to go about it. I hope that answers the Chairman's question.
Yes, absolutely, but the true role of charities is advocacy and innovation. They are things the State may not always be willing to do. If more charities could be in that space, there would be a healthy tension between the citizen and the State rather than the State becoming a service provider by default because there is nothing else out there.
In terms of area planning, we could spend years deciding what structures to base things on. I often think, and the articles I quoted by Mintzberg support this, that a lot of time can be spent getting into structures, reorganisations, new logos and new this, that and the other, and this takes away from the energy of doing the work because at the end of the day, whatever the size of the population, people have to work together.
The new community health care organisations are a good starting point. It causes some amusement that community health care organisation area 4 looks a lot like the Southern Health Board of old, so we will kind of go back to the future. I would not get too caught up in that. They need to be sufficiently localised to connect with people. They should not be too remote. Within a community health care organisation, there could be clusters but the voice of the citizen has to be active and not just an afterthought. It should be driving them and having these kinds of conversations directly with commissioners and providers of organisations.
That is what the NHS Citizen project is about. It is about enabling the citizen, provider and commissioner to have these conversations. Very often when we have the citizen meeting the health provider, it is in a situation of frustration and anger. Those conversations are very understandable but they often do not go anywhere because the provider gets entrenched and hides away or the citizen is so cross they cannot bear to talk. It is not just the "what" of the planning forum but also how they operate. They need to be on a statutory basis. The homeless forums were great but they came and went. Does that answer the Chairman's question?
I am talking about both and about any other methods we might need. One of the good things about the national dementia strategy is that there are people with dementia actively participating in it. We need to see that in all these forums because people are able to articulate their needs and indicate their preferences. There needs to be new ways of working in order that those kinds of different groups can converse with each other. It is equally an issue with the professions. For example, sometimes the physiotherapist does not talk to the occupational therapist about the care needs of the person. They need to do that. There should be all these different conversations but they should be driven, as Senator John Dolan said, by the needs of the person first and foremost. Things like personalised budgets shift power in a very meaningful way. It is something we need to look at seriously.
I thank the members of the Seanad Civil Engagement group for their presentations. This has been one of the craziest mornings we have had in the Houses of the Oireachtas. There are so many different people trying to meet. I welcome the individual presentations. I have one question which I will address to all three Senators if they wish to comment. In each of the Senators' area of expertise, do they see the issue as one of resource and financing or does it comprise organisational issues? Perhaps it is a combination of both. If there was enough finance and resources in the morning, do the Senators believe they could do what they need to? Does the organisation need to be totally changed for them to achieve their goals?
Unfortunately, it is both. The organisation and culture issues cannot be underestimated and neither can the inflexibility of the systems. Expenditure on social care services for people with disabilities is €1.5 billion but it is very tied up. If people say they want services delivered differently, it is extraordinarily difficult to do that in response to them. We might have the same amount of money we want to spend differently but it is extremely difficult because of the way the systems operate. There are shortfalls as well. If one looks at the annual report of Cork Simon Community, where I worked for eight years, it shows that it has to fund-raise half the money it needs every year to support 1,000 people in the city. There is a funding shortfall there. Services and supports for people who are homeless in the city should not be reliant on the kindness of people. They should be on a stronger footing than that.
It is great when people are generous. I was very grateful when I was working in that organisation because it allowed us to do certain things. One of the things we did was walk-in counselling. Very often people with addictions could not access counsellors because they had to be sober. People were not going to become sober overnight, yet they had to make that leap. We innovated in that way with walk-in counselling. Someone might not be able to wait three weeks for an appointment. They might need to see a counsellor at the time. That is an example. It is an organisational and cultural issue but there are also big resourcing gaps.
The Deputy referred to a combination of resourcing, financing and organisational issues. It is beyond that. I am not saying these are not issues, however. We are being wasteful by not coming at this from a different perspective. We keep talking about the cost of everything and we are rationing all the time. I accept cost is an issue but we have to get our heads - our spirits - into a place where we have two choices. We either let these people wither and die or we do what has to be done over a period to ensure they can participate fully in society. That means getting back to some things and opening another front on prevention and early intervention, while drawing people, families and their support groups into the work and getting a more genuine partnership.
Services have been sliced and diced and it is said this is the way they will be provided. That is more and more madness. Yes, people need a roof over their heads and they need people to help them in residential settings and to have activities. Why are we looking at day programmes as the standard and not asking why are these people not migrating into activities in the community, work and jobs or whatever? It needs to be approached that way and that one starts migrating from the dysfunctional approach we have.
To be a charity, the test is that one has to be regarded as a public benefit. All of the organisations that are part of the State are there because they are considered to be a public benefit. Now one has not got the State and the charities at two ends of the spectrum. What one has is a different governance. The HSE, Health Service Executive, is a creature of the State, as well as all the other public bodies. An organisation that sets itself up is a creature of the people who set it up. Article 40 of the Constitution gives people the right to set up organisations and unions. That is a basic democratic principle.
Recently, I was at some meetings with colleagues from Poland and Hungary who are quite concerned about the shrinking of the civil society space. That does not give licence to not being a good well-organised or well-governed entity, however. There are many smaller organisations which get little or modest funds from the State. They might be dealing with people with a particular condition, of which there may not be a significant number. They need to create a brand or public awareness around that condition to ensure people who get a diagnosis of that particular condition will come to them. They also need it to be able to raise funds and operate in the public sphere to create further awareness.
There are complexities around this. In the private sector, there is legislation to stop company amalgamations because they might not be good for competition. We need to look at this. What about the idea of autonomy and choice? There has been a blossoming of smaller organisations around mental health, neurological issues, local groups and suicide prevention. There is a tension between the benefit of keeping it at a tidy number and the benefit of allowing 20 groups create a head of steam about a certain condition.
The Chairman said the charities area is quite a problematic one and there needs to be more cohesion and accountability. That could be said of the whole spectrum of State services, private businesses and voluntary organisations. I am in the Disability Federation, an umbrella organisation for 130 groups, some of which are very large and significant direct service providers. It might be like church-run schools where there is a time when an organisation goes from being on the edge and providing a service no one else is to becoming funded and core-supported. There is a time to relook at that.
For the other ones, it is more about how we can put in back offices and get them to work in tandem. Take three organisations dealing with children who have similar conditions. It would make sense that they would not all be trying to have someone in Cork and Kerry to visit the children they deal with.
We went down a road in the early noughties to deal with and improve governance in organisations. It was very hard to get any interest from the State. We only woke up to the idea of governance when the banks went wallop. Understandably, we have been very strongly on the side of compliance since. The other side of governance is the UN Convention on the Rights of Persons with Disabilities. That states all of Ireland has to dance to a particular tune to ensure people with disabilities can be included. This can become the hook for us to have hard conversations, not just with Departments but with organisations, that this is not just about the organisation or agency on its own anymore but that this must be moved on at a societal level. I am not going to defend poor and wrongful practices because they harm people with disabilities. I know that so well.
Senator Colette Kelleher made an important distinction between advocacy groups and service providers. Too often in our past, charities have had to step in to provide services where the State has failed. We seriously need to look at the State providing services that it should have provided in the past and, in that way, to bring more coherence to service delivery as well.
Will Senator Frances Black comment on Deputy John Brassil's point about whether the main problem is organisation or resources?
It is a bit of both. I feel very privileged to address the committee today. Both of my colleagues from Civil Engagement are very experienced in this area. I probably do not have the same experience. I can only talk about the experience I have had in the charity sector working with the RISE Foundation, which I set up myself, and the lack of resources we have had. We provide a service for family members who have a loved one with an alcohol, drug or gambling problem. Many of these families are in serious crisis with serious mental health issues, particularly partners, mothers, fathers who are suffering horrendously with anxiety and depression. When they come to the RISE Foundation, they are in absolute crisis. We have never received any funding from anybody. We have 50 people attending our service this week alone and all 50 of those service users are in absolute crisis. We have started to partner up with other organisations, such as the addiction service Turas in Dundalk, and the Family Support Network. We really believe in partnering with other organisations.
I can only talk about that experience and apologise if I am not answering the committee's questions.
I can only speak about the lack of resources and how extremely passionate I am about being a voice for the families in question. I try to represent them as best I can. I really do want to work with the Health Service Executive. In fact, it is one of our goals to prove to the executive that we can provide a very good service and replicate the fantastic results we have seen in the evaluations we have done. I am not sure whether that answers the Deputy's question.
Senator Black makes her point very well that the distinction within the HSE between mental health services and addiction services is an unreal distinction which to be bridged and that the services must be co-ordinated.
I thank the witnesses for their educational presentation. We all are here to learn. It seems clear to me that what is lacking in the system are empathy, education, support, equality and inclusion. Senator Black referred to dual diagnosis, which is a new development. Surely, in 2016, we should have got to the point where we know what is required in terms of empathy and education and the supports that should be in place. Unfortunately, the entire system is fractured. Senator Dolan observed that it is not all to do with the health service, that we must also look to social inclusion. It is about people getting out in the world and making approaches. Many people with disabilities are not sick. We must ensure they have the best quality of life we can provide by focusing on equality and inclusion. A simple step to implement would be the provision of streetscapes on all main streets, ensuring they are wheelchair accessible, there is the correct colour code and so on.
I agree with Senator Colette Kelleher that certain groups continue to be excluded. Again, this usually comes down to a lack of education. The Traveller community suffers a great deal in this regard. The extremely high suicide rates in that community are not being reported properly and many Traveller families have been let down. LGBT people have also suffered but, fortunately, through education and inclusion, people are getting their stories out.
Returning to Senator Black's point about dual diagnosis, it comes down to three factors, namely, education, empathy and support. Each person is an individual with specific needs and should be treated as such. There is always an underlying problem in these cases and it is vital to identify that problem as soon as possible instead of allowing it to fester until the person eventually presents for help. GPs have a vital role in this regard and we should be seeking to nip these issues in the bud at primary care level. The greatest problem in this area is that there does not seem to be a consensus on how to proceed. We remain a cure society when we should be a preventative society, even though we would likely spend three times less if we looked to prevent rather than cure.
I commend the witnesses on their contribution. We are all here to learn as we work to make improvements for the future.
Senator Dolan referenced Article 40, on the right to form associations. That article is the basis from which I made a good living and is an issue about which I feel very strongly. I would like to explore the journey from advocacy to service provision. I am not sure I share all the Senator's views on the role of the State in this regard but I recognise that there is a replication in the charities sector. Senator Dolan will correct me if I am wrong but it certainly seems to me, as an observer, that there is a problem of duplication to be addressed. Many of the criticisms of our health and social care services revolve around their silo nature whereby A does not talk to B, and B, in turn, does not talk to C. There are multiple charitable and voluntary organisations dealing in the same area. Without wanting to stymie their advocacy function, which is incredibly important, I would like to know what scope there is for co-operation between charities.
Senator Colette Kelleher spoke about the limitations that are sometimes placed on service provision. Without meaning to put words in anybody's mouth, I wonder whether that is because of the mechanism for service level agreements. I suspect people are given a tenner and told to do €50 worth of work with it. Again, there are multiple agencies and a great deal of replication because the governance and administrative systems have to be in place. That can create a difficulty. It seems some charities suffered more than others in terms of cutbacks because they simply did not have a buffer. Smaller organisations, in particular, have felt that pinch considerably. I am interested to hear any observations the Senator might have in regard to service level agreements. It is the model that seems to be driving most provision.
I am aware of the good work Senator Black does in the area of dual diagnosis. The Government sector, including the HSE, is not doing enough - if it is doing anything - to address the issues in this regard. There must be a link-in with mental health services. I am interested to explore the extent to which there is a difficulty in this respect given there is largely no recognition of dual diagnosis despite the general acceptance that it is an important issue which needs to be dealt with. I am wondering about the extent to which charities can shape policy, including, but not solely, in respect of the issue of dual diagnosis. Or is the policy of charities mostly driven by the funding that is available to them?
I apologise for missing the start of the meeting and thank the witnesses for their contributions. From a broader perspective, we are talking about trying to develop a health strategy for the country for the next ten years. That is the purpose of this committee. In that context, the role of the charities and advocacy sector and how it should fit into the broader model is an important issue for discussion. We all tend to look to the State to do everything in the area of health care provision but it is important to recognise the very important role for civic society in this regard and the need to encourage continued charitable giving. This can be done by giving of one's time, service and support or via donation. The charitable instinct is a noble attribute which we should encourage in our society. We must not, however, have a situation where society is totally dependent on charity, with the State abdicating its responsibility.
There is a large number of advocacy groups working, with varying levels of success, on particular campaigns and to raise awareness of specific illnesses and diseases. Some of these organisations move from advocacy to service provision, which is where things become more complex. In the area of counselling or disability, for example, how does one encourage as much effort as possible while also ensuring the service being provided gives the best clinical outcomes for individuals? There is a need for clarity on this question of the regulation of services.
Another important question is how we can build the work of charities into the primary care sector.
I do not wish to pre-empt the work of the committee but primary care is certainly viewed by most people and most expert groups and organisations as the way to deliver health care in the years ahead so that we keep chronic illness out of hospitals and deal with most things in the primary care setting. How can we complement charities working with primary care and broader community services? Meals on Wheels is an example. It is a very simple concept but it is a very important issue in Ireland where people give of their time to give meals to people who need them. It is more than just the nutritional value; it is the contact. The issue concerns complementing or supplementing that with home help hours with the public health nurse feeding in. Where do the witnesses see the charitable sector fitting with State services in a co-ordinated way that does not stymie individuals who want to set up charities or advocacy groups? Where do the witnesses see that sitting in terms of trying to deliver a health strategy?
The local health forums suggested in my submission are a way into that. As well as the commissioners, which are the HSE, and citizens, one has the organisations that are concerned or involved. They could be advocacy or service delivery organisations and sometimes they are both. The Cork city homeless forum was a brilliant example of that in the noughties. The HSE, Cork City Council and the organisations sat around the table and planned very coherent services. One group was missing, namely, homeless people, and that would need to be corrected. By 2011, there were enough beds for everybody sleeping rough in the city so the forum was very effective. It was not on a statutory basis so it could come and go.
Those kinds of planning forums involve people working together at a local level. The Carlow-Kilkenny model is good, except that one does not find the patients or the charities in there working together. Each has different roles to play and everything does not have to be done by professionals, as sometimes a volunteer can be involved. If someone is living in a residential setting and fancies going to a match on a Sunday, he or she does not need someone with a nursing qualification to do that. It involves those kinds of groups working together, while being driven by the person and citizen rather than the vested interest of, for example, the charity that has always done this work in this way or the professional who must leave a shift at 8 p.m. so everybody has to go to bed at 7 p.m. It is about turning the planning and delivery of services on its head so that it is focused on what the person needs.
All the different actors need to play their part. If charities serve the citizen in advocacy or in providing services, support or volunteerism, they have a role to play and if they do not, they do not have a role. The restrictive practices piece does not just relate to charities. It relates to shift working and working in different ways so that it meets the needs of the person. It is not just about the "stuck-ness" of the system we have. Practices cut across the different interest groups. The professions and charities are in there with their stake but those stakes have to serve the person. There is a unique opportunity to turn things on their head.
The service-level agreements mentioned by Deputy O'Reilly are very rigid and restrictive. There is no doubt that, most of the time, organisations with them deliver more than they are paid to do. There also is an opportunity to look at those in terms of expecting good governance and public accountability from the charities. I am interested in the debate about the national maternity hospital and the arguments between two different groups. Service-level agreements are ways those groups could be forced into because at the end of the day, it is for the State. However, the State often underfunds those agreements.
Regardless of whether it involves a provider, a commissioner or a person working on the front line, unless empathy is at the heart of all this and we do what we do kindly and properly and do not get disassociated from the person at the centre of all of this, none of it matters. That point was very well made by Deputy Buckley.
I am very concerned about this area because we are aware of the relationship between alcohol, drugs and even gambling and mental health and how they are so closely linked. Gambling probably has the highest rate of suicide out of all the addictions. When I worked as a therapist in the Rutland Centre, I do not think I had met anybody in there with an addiction who did not have underlying issues with mental health, depression, anxiety and stress. My concern is they are not really under the umbrella of mental health, which plays such a huge role. I know a new youth task force has been set up by the Minister of State, Deputy McEntee, and it is a fantastic idea. However, my concern is that nobody on that task force is talking about dual diagnosis or the role of alcohol, drugs or gambling and young people. I know that gambling in particular has gone off the Richter scale because there is such easy access to it on the Internet. From a mental health and addiction point of view, people need to work together. The issue needs to be addressed.
The services around addiction are atrocious. There are no services specifically for alcohol on the west coast, which is shocking. Again, I return to the fact that three people a day die from an alcohol-related illness. I agree with Senator Kelleher about round-table discussions, meetings involving all of the services and, in particular, about the importance of being citizen-driven. It is vital.
I said earlier that charities are allowed to be charities or are granted that status because they have a public benefit remit. I keep seeing that as the thing that can help us to be more coherent about where and how they fit. A lot of these organisations set up and got into provision by default because they decided to roll up their sleeves and do something. This is not to blame anyone. It is a case of people saying there does not seem to be a door they have knocked on that has the answer for them, so they will get going on it.
From my experience across the broad sector, I get caught up in definitions. Is giving somebody support, advice or contact information a service? I think it is but often when we talk about services, we are actually talking about the hard services and very often the ones that cost the State a lot of money to provide. There is a continuum. In terms of advocacy, support, a place to first listen to somebody and say "this will be all right. Others have got through this and survived", many organisations are very poor at understanding and articulating those things they do.
They have got caught up in the idea that if they cannot say they are providing a service, they cannot get money. There is much dysfunction. Let us be very practical and see what the State can and ought to do best, or what can it do with certain arrangements, contracts, etc.
We should remember there is a third ring in the circus. We speak about the charities and the State but the private sector is involved with this as well, regardless of what some of us might or might not think about it. That is becoming a bigger area. We must figure out in a practical sense what can best be done by an organisation that is generally close to people and which people have an affinity for, and which can be flexible in its responses and stand up for a group. That is important. How do we ensure such an organisation would provide very hard services around the clock? I do not know if that helps in some way. There is a continuum between the private and public entities. There are different ways for the State to ensure the services, as it can carry them out or make arrangements for them. The section 38 and 39 groups add to the confusion in this as well.
May I address some of the other issues?
Some of us are the fresh legs for the second half and did not appreciate that fact. Senator Buckley mentioned some health services that are at the core. This health issue must eyeball other parts of Ireland's public service. The education of kids is the education of all kids, employment is for all and public transport and income supports are for all. The health sector must get its mojo going and stop being on the back foot all the time. The Health Service Executive could start to warehouse people for the rest of their lives or instead other Departments and entities could get a move on in considering how to get involved. That is whether people are involved full-time, part-time, in jobs or community activities etc. That relates to the prevention aspect mentioned by Deputy Buckley. We can stop, slow down and ameliorate things but it is about where a person has mojo or whatever, with confidence built up. That often happens by seeing other people who have gone through the process or where families have capacity. If a family has capacity, whether there are one or two parents, regardless of issue, the doctor or voluntary and State organisations do not get put under pressure. There must be capacity in families and support entities, particularly smaller groups of all kinds. They can be bedraggled in how they operate. They are often who gets called and who offers invisible support.
Deputy O'Reilly referred to co-operation and co-ordination. In a sense I have exercised that a bit in some of the comments. There is genuinely territory that we have not explored at all. We might have different views about it at the end of the day but there is a whole area of the pitch we have not gone near in solving this.
I acknowledge the submission made by the Disability Federation of Ireland. It is very comprehensive and we very much appreciate it. A number of members of the committee were not able to be here this morning because the meeting clashes with other committees. That is an issue we are all grappling with. It is very unsatisfactory and the issue must be dealt with separately. I thank the delegation for coming along this morning, giving a very full presentation and answering our questions. We very much appreciate the input to the committee. That will certainly be reflected in our final report.