Oireachtas Joint and Select Committees

Wednesday, 5 October 2016

Select Committee on the Future of Healthcare

Citizen-Centred Health Care: Civil Engagement

9:00 am

Photo of Colette KelleherColette Kelleher (Independent) | Oireachtas source

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.

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