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Seanad Éireann debate -
Wednesday, 1 Apr 2009

Vol. 194 No. 14

Health Services.

I welcome the Minister of State at the Department of Health and Children, Deputy Moloney.

Cystic fibrosis is Ireland's most common life threatening inherited disease. Ireland has the highest incidence of cystic fibrosis in the world and the worst strain. Ireland has the highest mortality rate for cystic fibrosis sufferers in the world and the worst adult treatment for the condition. It also has the largest proportion of families with more than one child suffering from the condition. There are an estimated 1,135 sufferers in the country. Every year approximately 30 to 40 children are born with cystic fibrosis in Ireland and one in 19 Irish people is a carrier of the gene. There is no cure for cystic fibrosis.

It has been shown that the overall condition of cystic fibrosis patients improves when their care is concentrated among specialists who are well aware of all the systems that must be treated. The future looks uncertain for cystic fibrosis patients as treatment, services and facilities in Ireland remain well below acceptable international standards.

The Pollack report of 2005 brought the crisis to the public's attention. It highlighted the serious situation existing at St. Vincent's University Hospital, the national adult referral centre. The exposure of immune-suppressed patients to cross-infection is a critical issue in the management of the health of a cystic fibrosis patient. In his report Dr. Pollack described the lack of segregation and isolation facilities at St. Vincent's University Hospital in Dublin as dangerous and creating significant risks of cross-infection by virulent organisms. The hospital treats almost 60% of the country's adult cystic fibrosis population.

Patients are treated and staff are working in totally unacceptable, overcrowded conditions. It is critical that cystic fibrosis patients be treated in single rooms with en-suite facilities and that they are not admitted through accident and emergency departments Younger patients are being exposed to the frightening reality of the disease's progression by sharing wards with older patients. The death rate among people with cystic fibrosis is intrinsically linked to facilities and specialist staff. Ireland displays a much higher death rate than England, Wales and Northern Ireland, showing an average life expectancy of 35. Respiratory infections are the main cause of clinical problems and the leading cause of death for people with cystic fibrosis because constant infections lead to deterioration of the lungs.

When asked about the funding issue in the Dáil last night, the Minster for Health and Children, Deputy Mary Harney, said that although the 120 bed unit in St. Vincent's Hospital which was promised and due to open in 2010 was a priority, the HSE cannot build it if it does not have the money. The Cystic Fibrosis Association of Ireland claims that the HSE was inundated with offers of private funding to build and furnish the unit and that the cost to the HSE would be that of staffing the unit. I remember hearing on a television or radio programme that a private donor was going to put up the money.

Will the Minister of State please clarify the matter for the House and the people of Ireland? On a human level, when one talks to parents who have children with cystic fibrosis, one realises it is a harrowing disease. The Minister of State is a parent with beautiful children. Any parent will know what it means to see a child suffering from the day it is born. I am familiar with one lady who is saving up money for her child to have a lung transplant. I cannot imagine what it is like to have to deal with this, only that it is brutal. I plead with the Minister of State to progress this matter and to consider having alternative funding.

I thank Senator White. I apologise that the Minister, Deputy Harney, cannot be in the House and I take the Adjournment on her behalf. I accept totally the bona fides of the case made by the Senator. Last night in the Dáil, I took the Adjournment debate, not the Minister. I made it clear on her behalf that while the HSE states that it does not have the funding at present this situation will be reviewed after the budget of next week. I will rely on the script prepared for the Minister to outline her position.

The Minister has consistently emphasised the need to improve facilities and services to persons with cystic fibrosis. It is worth noting that 48 additional staff, 19 at St. Vincent's Hospital, including consultant, nursing and allied health professionals, have been appointed across the hospital system in recent years in order to enhance the level of services provided for persons with cystic fibrosis.

St. Vincent's Hospital in Dublin is the national adult tertiary referral centre for patients with cystic fibrosis. A number of capital projects to improve the quality of accommodation have been completed at the hospital recently. These include the refurbishment last year of accommodation to provide eight single en-suite rooms for the exclusive use of people with cystic fibrosis. The eight single rooms have improved the quality of service for people with cystic fibrosis. The hospital's management works closely with doctors caring for cystic fibrosis patients to ensure the needs of those patients requiring treatment are met within the overall bed complement at the hospital.

It is intended that a proposed 120-bed development will include dedicated facilities for patients with cystic fibrosis. These facilities will include appropriate isolation facilities, as mentioned by the Senator. Design work and preparation of tender documents continue in respect of the development. This is a significant capital project in the acute hospitals area. The HSE's draft capital programme of 2009-13 is currently the subject of consideration. The Minister has confirmed she will discuss this matter and the overall capital plan with the Health Service Executive after the budget of 7 April. This is far from being a closed case but it involves seeing what is available in the capital plan which will become obvious to all of us after next Tuesday. At this point, the Minister has stated she will encourage innovative solutions to implement high priority projects, so that services, including for patients with cystic fibrosis, can continue to be developed.

A number of other significant capital projects are being progressed for cystic fibrosis patients throughout the country, including in Beaumont Hospital. The HSE's expert advisory group on children and families produced a draft policy document on the implementation of a cystic fibrosis screening programme for newborns. A steering group will be established in 2009 to oversee the roll out of the screening programme. An independent register for cystic fibrosis has been established. It is expected that preliminary data offering full analysis relating to median survival here will be available by the third quarter of 2009.

The Minister is conscious that further improvements are required, including the need to develop community outreach services to facilitate the treatment of patients outside of a hospital setting, where appropriate. Taken together, the planned developments represent a tangible improvement in the quality of services for people with cystic fibrosis.

I emphasise that the capital programme, as promised, is still on the agenda and further clarity will be available after Tuesday next.

I thank the Minister of State. We shall wait optimistically and hope there will be funding to continue.

Carer’s Allowance.

I ask the Chair's permission to share time equally with Senator McFadden.

I welcome the Minister of State and thank him for attending. This matter is very simple. It asks that we recognise the contribution of carers. I pay particular tribute to the carers in my area of Cork city, to Mr. Peter Cox and to those involved in the Cork Family Carers Forum.

More than 106,000 people provide full-time care in our State for the elderly and the sick, in many homes and communities. The key words are homes and communities. These people save the State €2.5 billion per year. It is wrong that the national carers' strategy has not been implemented. This is regressive. It is important that the Government stops its rhetoric and pious platitudes and delivers and gives a commitment to the cost-neutral elements of the strategy.

As the Minister of State will know, from his current position and from being Minister of State at the Department of Education and Science, carers are unique people who provide a great service to the community and the people for whom they care. They prolong the lives of many people who otherwise would be in institutions and would not have the quality of care that carers provide for them. There is a need to deliver on the national carers' strategy. I lament the fact the Government has decided not to proceed with this. Given the recession we face, we all accept that costs must be trimmed and excesses removed. However, as Senator Paul Bradford stated in this Chamber last week, the cost of providing a non-means tested carers' allowance would be minimal to the State.

The Government is instilling fear, worry and concern in the minds of carers and those for whom they care. What does this tell us about the Government's attitude to carers and to those who are in need of care or are elderly? The Departments of Health and Children and Social and Family Affairs, the HSE and all involved — stakeholder is the great word we use — must come together in this recessionary time to deliver on the cost-neutral proposals in the Government's policy on the national carers' strategy.

The Carers Association has proposed many good, sound, sensible cost-neutral proposals and I know the Minister of State is familiar with these. I cannot understand why there cannot be an announcement to the effect that the carers' allowance can be shared by two carers who provide care on a part-time basis. This relates to the establishment and regulation of quality standards and community and home care services in the delivery of home care packages and other home care services. The anomaly whereby the income generated by carers who work part-time as home helps with the HSE is taken as means in respect of their carers' allowance payment should be rectified. Income generated by all carers working the allowed 15 hours should not be taken as means. Carers have raised other issues. It is important to develop the existing resources at our disposal to put in place a work-life balance that recognises the great work being done by carers and that gives hope and comfort to those being cared for.

I thank Senator Buttimer for sharing time. I welcome the Minister of State. I wish to highlight this issue because of the fear and the devastating impact that would ensue if there were to be cuts to carers' payments in the imminent budget. As Senator Buttimer has said, a total of €2.5 million has already been saved to the State every year by these people being allowed to care for their relatives in their own homes. It is Government policy to keep people in their own homes. What upsets me is that the carers are over a barrel. Any of us here would care for our elderly relatives and try to keep them at home no matter what and this will still be the case whether the budget is for them or against them. It is unfair because we need to support these people.

I ask the Minister of State that the carers' strategy be put back on the table and the budget-neutral proposals brought forward by the Carers Association and to which Senator Buttimer referred, be adhered to. If they are implemented they will not cost the State anything but will be of great assistance to carers who are the unsung heroes whose voices are silent. They are prepared to do the work anyway, regardless of whether we support them because they love their dear ones. It is incumbent on us as legislators to care for them.

I thank Senators Buttimer and McFadden for raising the issue. I apologise that the Minister for Health and Children is unable to attend to deal with this matter. I will read the response on her behalf.

Caring for another person, especially on a full-time basis, can have a huge impact on the carer and on his or her family. While it can be a very rewarding experience, it often involves sacrifices for the carers and their families, particularly in employment opportunities. It can also affect the carer's own health. While the work of carers can be unseen, the important and valuable role played by them in society has been extensively recognised by Government in recent years.

I appreciate that it has been disappointing for carers and the people for whom they care that the Government was not in a position to publish a strategy at this time. The Minister for Social and Family Affairs, Deputy Hanafin, and the Minister of State, Deputy Hoctor, met with some of their representatives at the time to inform them of the difficult decision taken by Government. Faced with the current economic situation, it has not been possible to set targets or timelines which can be achieved in the near future. Publishing a strategy would be making false promises to carers and carers deserve better than that. It is important to be honest in the commitments we make. The Government made a commitment to the social partners and to the carer representative groups at the outset that a national carers' strategy would not be just a paper exercise. While much work was done by the interdepartmental working group in 2008, including the production of a number of drafts covering the areas outlined in the terms of reference, a final text, including a list of recommendations, was not completed by the working group. It is therefore not possible to isolate a set of so called non-financial aspects.

I wish to reiterate on behalf of the Government that it is acutely aware of the sacrifices made by carers and has sought to make many improvements in services and supports for carers. By way of dealing with the income supports, in budget 2009, the rate of carer's allowance for those aged 66 or over was increased by €7 to €239 per week and for those aged under 66 by €6.50 to €220.50 per week. These increases took effect from January 2009. Recipients of carer's allowance are also eligible for household benefits and free travel and the respite care grant.

Since 1997, weekly payment rates to carers have greatly increased, qualifying conditions for carer's allowance have significantly eased, coverage of the scheme has been extended and new schemes such as carer's benefit, half-rate carer's allowance and the respite care grant have been introduced and extended. The means test for carer's allowance has been significantly eased over the years and is now one of the most generous means tests in the social welfare system, most notably with regard to spouse's earnings. Since April 2008, the income disregard has been €332.50 per week for a single person and €665 per week for a couple. This means a couple with two children can earn in the region of €37,200 and qualify for the maximum rate of carer's allowance as well as the associated free travel and household benefits. A couple with an income in the region of €60,400 can still qualify for a minimum payment, as well as the associated free travel and household benefits package. These levels surpass the Towards 2016 commitment to ensure that those on average industrial earnings continue to qualify for a full carer's allowance.

From June 2005, the annual respite care grant was extended to all carers who are providing full-time care to a person who needs such care, regardless of their income. The rate of the respite care grant has also been increased to €1,700 per year in respect of each care recipient since June 2008. In June 2006, the number of hours for which a person can engage in employment, self-employment, education or training and still be considered to be providing full-time care for the purposes of carer's allowance, carer's benefit and the respite care grant was increased from ten to 15 hours per week. It is estimated that the combined expenditure on carer's allowance, carer's benefit, the respite care grant and half-rate carers will be €650 million in 2009.

We must also acknowledge that carers need more than just income support, and in particular, they need community health services to assist them in their caring role. The Government's objective of continued development of community-based services for older persons is reflected in the funding given to the system in recent times. The total additional funding allocated for such services by the Department of Health and Children was in excess of €210 million over the three year period 2006 to 2008, which included, for example, €120 million given for the new home care package initiative, and €55 million new funding to expand the home-help scheme nationally.

In 2009, the HSE will continue to promote community and home-based services, which directly benefit both clients and carers around the country, and expects to provide, for example, in the region of 12 million home-help hours, benefiting more than 54,000 people; 4,700 home care packages, benefiting around 11,500 people; and 21,500 day-respite care places.

Another important service for carers is the ability to take a break from caring. In this regard, very significant residential respite care continues to be provided in public community nursing units, including community hospitals and long stay residential units across the country. There are over 700 designated respite care beds provided nationally in these units. It is estimated that approximately 19,000 people benefit over the course of a full year, based on an average length of stay of two weeks per person. The HSE is involved in working closely with carer organisations in supporting older people in their own communities through service level agreements with a view to delivering services both nationally and locally within its budget and overall health policy priorities. For example, in 2008 an additional allocation of almost €2 million was provided between the Alzheimer's Society and the Carers Association.

The Department of Social and Family Affairs and the Department of Health and Children, including the Health Service Executive, are committed to providing support and services for carers and to working with the carer representative groups to deliver services in a more effective way.

I thank the Minister of State for his reply. I am disappointed the Government has not proceeded with the implementation of the cost-neutral element of the national carers' strategy. The Minister of State in his reply referred to the fact the interdepartmental working group did not complete a final text. Why was this the case? Why is it not possible to isolate a set of so-called non-financial aspects? If it is cost neutral why can it not be implemented? It does not make sense in the overall, holistic approach to carers. They have recognised that we are in stringent economic times. We have all been asked, including the Minister of State, for a cost neutral set of proposals to augment the work in the absence of a national carers' strategy. Why is that not being allowed to go ahead?

Over the years since the Carers Association became active in making representations to the political process one fact that has become very apparent from its deliberations and presentations is that it never wanted commitments or promises made that could not be costed or fulfilled. I share the Senator's belief that we can never do enough for carers, but I have to support the Government's position by suggesting that producing a list of recommendations that are cost neutral, in the context of the carers' strategy as initially outlined, separates the non-cost commitments from those that create the real difficulty. The Government prefers to wait until economic times are better to produce the strategy in full with the financial costings and the non-financial elements.

I will ask the carers groups to recognise this is not a stepping back or a cutting of services but a realisation that it would be nonsensical and dishonest of us to give commitments we cannot fulfil. I take Senator Buttimer's point——

The Minister of State was in Monaghan last week with Inclusion Ireland and made a presentation. This is part of what we are talking about.

In Monaghan I invited questions from the floor and when asked a direct question when we could put together the strategy for the supervision of adolescents and young people in care homes, I made the point that the funding was not available and that I would not make a false promise. I am doing the same in the Seanad.

Go raibh maith agat.

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