This is a very important subject. Caring, carers and the cost of the caring provided by carers which relieves society of many other responsibilities and financial burdens must be recognised. This is the Europe-wide version of the caring concept. I welcome Ms Brigid Barron of Eurocarers. The Vice Chairman, Deputy Dooley, has been anxious that Eurocarers make a presentation and I invite Ms Barron to begin.
Care Services: Discussion with Eurocarers.
Ms Brigid Barron
It is with great pleasure that I, as vice president of Eurocarers and founder member of Caring for Carers Ireland, accept the invitation extended by the Chairman, Deputy Durkan, to speak here today. I particularly thank Deputy Dooley for facilitating this important meeting.
With the population of Europe ageing rapidly, EU member states are becoming increasingly reliant on the contribution that informal or family carers make to society, while at the same time ignoring the role and needs of carers themselves. In most EU countries the family is regarded as the main provider of care. Carers are people who provide care for a variety of family members, friends or neighbours in need of help because they are ill, frail or have a disability. Without the work of these unpaid carers, formal care systems would be totally unsustainable. In economic terms, the value of their efforts in individual countries often exceeds those countries' formal spending on nursing and care services.
To quote from the WHO's Ethical Choices in Long-term Care document of 2002:
The obligation of caring for vulnerable populations cannot rest with the family alone. The burden is too great and the resources are too few — not everyone is capable of providing care and not everyone has family members or friends available to do so.
Eurocarers is a European not-for-profit, non-governmental organisation working for informal or family carers. It was established in 2005 in the Netherlands and registered in 2006 in Luxembourg. Membership is representative of carer organisations and research and development groups and related patient and family organisations. The organisation currently spans 17 countries and 30 organisations. Eurocarers is a network established by and for its members and, as an organisation, works from the bottom up to ensure the voices of carers are heard at local, regional, national and EU level and that the impact of policy on their daily lives is recognised by both policymakers and politicians. Eurocarers believes carers have a right to a life which is not negatively affected by caring, with access to an appropriate level of support in all areas to enable them to care where that is their choice and to allow them to have a life outside their caring role. The aims of the organisation are as follows: to advance the issue of informal care by supporting the development of carers' organisations where they do not already exist in EU countries; providing a united voice at European level; influencing policy at national and EU level; promoting awareness of carers' issues; disseminating experiences and good practice; providing information on relevant EU policy developments; and developing an informed research agenda.
With regard to promoting carers' issues and good practice, I have provided a separate information folder that gives three examples of best practice, including two from the Irish situation which were developed by Caring for Carers Ireland and relate to the technology programme established and the patient discharge letter. There is also an example from Finland on rehabilitation services for patients and family carers in the home which prolong the care of dependent people in the home. The documents also refer to the situation of carers in the United Kingdom, Sweden and Finland, in respect of which we have the background, services and legislation to support carers in each of these countries. Also included is the fact sheet developed by research and development representatives in the Netherlands, entitled Family Care of Older People in Europe, which provides a substantial amount of information relevant to the differences between countries and the variety of services and supports, or lack of them, in the various countries. A copy of these documents is available to each committee member.
There are 100 million carers in Europe. Up to 80% of all long-term care is provided by carers, mainly women. The average age of carers is 55 years. In 2005 some 19 million Europeans were engaged in caring for at least 20 hours a week, of whom 24% were aged over 65 years. It is important to acknowledge that while carers often care for older people, they themselves are often older and experience physical difficulties and find the burden of caring great. The average caring period lasts for five years or more.
The majority of people with disabilities live, and want to live, as part of their families. Families are the most consistent carers and supporters of people with disabilities. They are key advocates in ensuring their relatives enjoy high quality services and achieve maximum independence and respect as equal citizens within their local community.
The EUROFAMCARE study published in 2005 deals with the burden on carers. Some 1,000 carers in five countries were interviewed in depth and a number of national reports were provided. We can see clearly that the difficulties experienced by carers in the European context are no different from the experiences of carers in Ireland. We know carers more often make positive rather than negative statements about their caring experience. In my personal experience, there is a high willingness to care, although the following negative aspects are a reality. We know family carers lack information on supports and services; are often overburdened by the level of care required; have a high risk of falling ill themselves; have great difficulties in combining care and paid work; experience loss of income; have a feeling of being alone; do not feel appreciated in their care work; and have a high risk of physical, psychological, sexual and financial abuse and neglect, which is often hidden.
With regard to service use and need, more than three quarters of carers never used specific support services. In County Clare we discovered, when we established the carers clinic, that older people who were caring over a long period only attended the clinic when a crisis arose. In the main, they would not have sought services prior to coming to the clinic. We also know that if services are available and used, the satisfaction rate is high. Despite the efforts made so far, information and advice are considered most important for family carers in all countries, although it is still a problem in that they cannot access information.
With regard to the work done to date by Eurocarers, it has an impressive track record, given its relatively recent formation and limited resources. It has actively engaged with EU policy development and made responses to EU policy initiatives such as that on labour law, the statements on an open method of consultation, the Green and White Papers on demography, the Flexicurity consultation, Europe's social reality, the Green Paper on mental health and the Green Paper on promoting a sustainable workforce for health in Europe. In this regard, would the committee be amenable to a process whereby we could feed through our responses to the various policy documents coming from the Commission for members' observation and possible support? That would be a positive outcome of the meeting.
Eurocarers supports the European Parliament's Interest Group on Carers which was launched in June 2007 and is co-chaired by Ms Kathy Sinnott, MEP, and Ms Marian Harkin, MEP. We have produced a fact sheet on carers’ issues, which I have presented to the committee, and we have also published ten guiding principles highlighting the needs of carers. These principles govern the work of our organisation and will hopefully influence policy development. We have also been involved in the production of several research publications and have developed a website, www.eurocarers.org. In addition, we have been involved in hosting various conferences in different European locations and we are involved in various European Union-funded programmes.
I will deal now with potential opportunities for carers within the context of the Commission's legislative and work programme for 2009, Acting Now for a Better Europe. Unfortunately, despite having made a substantial submission to the Commission, carers are not specifically referred to in the programme. The reality is that carers can be included in many categories and that many policy developments impact on them and their interests. Thus, there is a wide range of carer-friendly policies possible at all administrative levels, from the European level to the local level. Carers are an inclusive rather an exclusive group. Any one of us may require care in the future or may be obliged to provide care for others. Even though carers are not recognised as a specific entity within the work programme, their issues and interests must be incorporated into various aspects of the programme.
The work programme for 2009 lists several strategic and priority initiatives which could impact positively on the quality of life of family carers. These initiatives include reducing health inequalities in the European Union and actions against cancer, Alzheimer's disease and HIV-AIDS, which will focus on providing improved access to treatment and care. As I said, Eurocarers has been involved in various conferences, including one in Slovenia which focused on long-term care, and another in France which dealt primarily with issues affecting those caring for a person with Alzheimer's disease. We plan to attend a conference in Prague shortly and another in Stockholm in September which will focus on dignity and ageing.
At European level, much of the focus is on issues such as healthy ageing, positive ageing, active ageing, lifelong learning and so on. There is little challenge in all of this. There is little emphasis on the reality of life for carers. For example, a person caring for an older person with a disability and who is also incontinent will have to get up three or four times every night, before getting up again in the morning to wash, toilet, clothe, feed and provide medications for that person. That is where the challenge lies.
In the European context and in the context of State service providers, this issue is being ignored and pushed under the carpet. We can all manage lifelong learning, active ageing and positive health. That is nice, easy and enjoyable for us all. However, when it comes to the daily grind and burden of caring for a person, especially in cases where the carer may be as old as the person being cared for, it is very difficult. It is especially difficult for those caring for a person who has Alzheimer's disease, displays challenging behaviour, has a disability, has suffered a stroke or head injury or who is incontinent. I know what I am talking about because I have done this type of work.
The work plan for 2009 also refers to a Community initiative on work-related musculoskeletal disorders. The objective of this initiative is to protect the health and safety of workers from the risks of musculoskeletal disorders. It is important to note that carers in the home have no such supports or protection. We look forward to a forthcoming communication on information and communications technology, research and development and innovation which includes a focus on telecare services. Social alarms, for example, provide independence, safety and security for people who would otherwise have difficulty living at home. There is significant potential in the area of telecare and telemedicine. Unfortunately, however, the Government is not availing of the opportunities in this regard. There is potentially great benefit in terms of cost effectiveness in developing such services in community care.
I will now highlight several key areas for concrete action in the forthcoming health plan. I have already spoken about healthy ageing. The demand for care is rising and we must, as a society, make caring possible. It is absolutely crucial to enable ill and disabled people to live as they choose. Healthy ageing is vital and support structures for carers are essential in supporting that objective. The greatest challenge to our health system, in terms both of finances and organisation, is the management of chronic mental and physical illness and the provision of supports for such individuals and their carers.
Another important issue is equality of access to services for carers. Persons providing substantial care to others are twice as likely as non-carers to suffer a chronic limiting illness. Therefore, it is imperative to support advocacy structures locally, nationally and at European level which give a voice and visibility to carers. Many carers are forced to leave paid employment so they can continue their caring responsibilities. In order to avoid carers falling into long-term poverty, we call on this committee to encourage the Commission the take concrete steps to ensure carers have access to quality health care and social insurance and do not lose out on pension entitlements. It is time to design a new social contract for care which goes beyond the traditional view of a contract between the State and the individual. We call for new commitments which involve employers, local agencies and communities. All stakeholders must be clear about their roles and responsibilities and must agree a core set of values if we are to ensure carers receive the support they need.
A vital aspect of any policy regarding elderly care is the issue of quality care at home. All the European Union documents uphold the principle that older people must be maintained in dignity for as long as possible. Family care should be viewed as a crucial part of the provision of quality care for frail older persons. We call on this committee to consider, together with the Commission, the strong social arguments for using European Union funds under the public health programme to support the capacity-building of the relevant grassroots organisations. The provision of supports for carers should be seen as an investment rather than a cost.
Information provision is another factor. Given the fragmented policy approaches towards carers in member states, one of the greatest challenges is to find a common policy approach on carers. We call for the extension of the use of the open method of co-ordination to focus directly on carers. A peer review system between member states would be a positive step in adding value at European Union level. Eurocarers is willing to provide assistance in this regard.
I will deal now with the Irish context.
While I do not wish to rush Ms Barron, as it is now 1.50 p.m., do members wish to suspend the meeting and return after lunch? It is up to them.
I cannot return after lunch but will be obliged to leave after 2 p.m.
While I am amenable if members wish to conclude, we should continue, if possible.
In that case, Ms Barron should bring her presentation to a conclusion as quickly as possible.
Ms Brigid Barron
I will move on. The documentation relative to the national carer's strategy has been submitted to members. I refer to an issue pertaining to carer's allowance, whereby carers are only entitled to work 15 hours per week and are excluded from community employment schemes and further training and development.
As for Eurocarers's strategic objectives, as an organisation we identify the key objectives of representing the interests of carers, involving and supporting national and research and development organisations, improving information exchange between members and European structures, promoting best practice through the development of comprehensive surveys, developing policy statements and developing strategic partnerships. A proposed objective for the Eurocarers network concerns the establishment of a staff and office base in Brussels.
As an organisation, we are newly established and have no core funding. The only funding we can source comes from membership fees. While membership fees from, for example, current members in northern European countries are strong, unfortunately the accession countries have stated they cannot afford membership and consequently pay a nominal fee to register as members of Eurocarers. We are working to obtain corporate funding and are having small success in that regard. Essentially however, the objectives of the organisation are quite broad. The joint committee may be able to assist us in the initiation of the establishment of a European year for informal or family carers. This would be a highly positive move for the organisation.
To enable Eurocarers to become more effective in supporting family carers and to reach its targets, it is of critical importance that funding becomes available to ensure its survival. To date, the work of the organisation has been undertaken in a voluntary capacity by a small number of highly dedicated people, representing carer organisations and research and development organisations. This level of input cannot be sustained and is becoming more difficult as time goes by. I have enclosed a budget for estimated start-up costs for the organisation and while recognising the challenging economic situation, it makes sense to provide support to the 100 million carers who provide long-term care on an ongoing basis.
In their 2007 message to the Heads of State, the European Ministers with responsibility for employment and social affairs declared it to be a top priority to support informal care. The provision of support for family carers through the provision of respite care, practical help, adequate income and services that target and meet carers' needs is essential to enable family carers to achieve a quality of life that is on a par with other members of society. Care within the family will remain one of the most important sources of support for older people into the future and if carers are expected to continue to provide care, and they are, their needs and requirements must be an inherent part of health and social policy development. Simply put, sustainable health systems do not work without carers. I thank members for their time and attention.
I welcome Ms Brigid Barron and thank her for her presentation. I am acutely aware of the excellent work Ms Barron does, through Eurocarers in particular, as well as through many other organisations in which she is involved. I thank the Chairman for facilitating the presentation. It is important to bring such a group before the joint committee because members often lose sight of the direct impact that European organisations have on citizens. In the context of the Lisbon debate, members in the past have discussed how detached Europe has become from its citizens. This group has proposed a framework or model in which it attempts to put together a methodology whereby one can take the best practice that obtains in a member state and try to roll it out throughout the entire Union.
From that perspective, it is important to try to highlight more of the work done in Brussels and in Europe generally, as well as the work that can be done through non-governmental and voluntary organisations such as Eurocarers. Doing so can give citizens a better understanding as to the reason we operate or co-operate as member states under the banner of the European Union. It is not simply a matter of looking to Brussels for funding, which unfortunately is how many of our citizens have perceived Brussels or Europe in the past, but there is an overall benefit to understanding and sharing information, as well as developing practices that improve the lives of our citizens collectively. I thought this presentation might be useful from that perspective.
I also suggest the joint committee should forward Ms Barron's presentation to the Minister of State with responsibility for European affairs. Members should seek guidance on their response from the Department in respect of the possibility of finding a method to support the efforts of Eurocarers, through the establishment of that office in Brussels, which should be funded through whatever means possible. Without a central focal point in Brussels, it will be extremely difficult to co-ordinate the activities of the various carer organisations throughout Europe. As the benefits thereof will accrue to both Ireland and other member states, this matter should be dealt with it through the Department with responsibility for European affairs and thereafter in contact with other member states. I will not delay the meeting further.
I thank Ms Barron for her illuminating submission. I support Deputy Dooley's suggestion that the joint committee should forward the presentation to the Minister of State with responsibility for European affairs.
I reiterate the same point. Ms Barron's presentation was highly moving apart from anything else. The other point that came to my mind concerns the financial benefit to the community as a whole, as the alternative to having care is putting someone into a home. While such a person obviously will be cared for in that setting, I refer to the benefit of being able to remain at home on a personal basis. I have in mind someone I know well who has stayed at home and who has a carer who is a relative. However, as the relative is now well into her 70s, she is obliged to get additional help. The cost to the community would be much higher, were we obliged to look after such people full-time in a hospital or nursing home. Consequently there is a great case to be made in this regard.
Those points are well made and Ms Barron also made her case well. All members have encountered cases that demonstrate how unfair this is to the carer. For instance, a carer who is a mother may care for a child with a disability for up to 40 years in some cases. Then, if she happens to be married to a public servant, for example, who gets a State pension, one finds the carer will get nothing in recognition of the years that were devoted to caring. However, the child would have required institutionalisation otherwise and the wife or spouse concerned could have gone to work in the meantime. Consequently, members engage in daily confrontation with the issues raised by Ms Barron.
Deputy Dooley's suggestion about furnishing the document to the Minister of State is a good idea. We also should provide it for the Department of Social and Family Affairs, which also has a European aspect to its activities that I can recall from my time serving there. I again thank Ms Barron for her presentation and assure her that members, as they have indicated, are highly familiar with the kind of problems her organisation faces and which she has illustrated so well today.
Ms Brigid Barron
Thank you.
The joint committee adjourned at 2 p.m. until 2 p.m. on Thursday, 26 February 2009.