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 Header Item Respite Care Services (Continued)
 Header Item Medicinal Products Availability

Wednesday, 12 December 2018

Dáil Éireann Debate
Vol. 976 No. 5

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  6 o’clock

(Speaker Continuing)

[Deputy Jim Daly: Information on Jim Daly Zoom on Jim Daly] An additional €10 million was provided this year to fund 12 new respite houses. That is one in each HSE CHO area and an additional three houses in the greater Dublin area to respond to the very high demand for respite from this area. These additional houses are providing additional respite for families who need it. Ten houses have opened to date, with the remaining two opening shortly. When fully operational, this will provide 19,000 extra overnights and 2,520 home sharing nights annually. Some €2 million of that extra money is being targeted at alternative respite services. These are practical and important solutions, extended day services, summer camps and Saturday clubs. They are making a difference to families right across the country.

In the context of respite services within Cavan-Monaghan disability services, I am informed by the HSE that Steadfast House has the capacity to provide 1,008 adult respite beds per year. Annalee View Respite Centre, which the Deputy mentioned, has the capacity to provide 910 adult respite beds per year, while St. Christopher’s Disability Centre provides, on average, 730 adult respite beds per year. Annalee View Respite Centre, Cootehill, County Cavan, can accommodate five service users at a time. Respite services in Annalee were recently restricted due to the needs of one person. However, the restriction is now lifted and the service has returned to normal capacity. The number of adult service users continually increases as service users transfer from child to adult services. This impacts on the level of respite existing service users receive. A number of service users have associated mobility needs which mean they can only access downstairs bedrooms. This affects the level of respite they receive. We are acutely aware that families need support to care for their loved ones and, therefore, Government is committed to providing a range of accessible respite care supports for people with a disability and their families.

Deputy Brendan Smith: Information on Brendan Smith Zoom on Brendan Smith I thank the Minister of State for his reply. I am glad that the restriction due to the particular needs of the one person he refers to has been lifted and that the service has now returned to normal capacity. Normal capacity is under capacity and that is the bottom line. When the Minister of State, Deputy Finian McGrath, met a delegation, along with me, he conceded that there is currently a deficit for respite services for persons with a disability in the Cavan-Monaghan area. Many of those parents across the area, as well as siblings, are very undemanding people. They are understanding that there may, at times, be a cancellation due to a crisis arising for some other family. Far too often, in the past few years, cancellations have been a regular feature in the delivery of the service. It is not acceptable and the people who speak to me understand that services will not be as good as we would all like them to be. They only demand a very basic level of service.

The Minister of State quite rightly refers, as the HSE indicated in written correspondence too, to the growing demand. As people leave the children's services and become young adults, an increasing number of people need these services. Parents, by definition, get older. Many parents ring me or come to see me at the weekend who are really worried about the long-term facilities and services that will be available for their loved one. There is no reason, as a society or a country, we should not provide a basic, decent level of service, which is critical for many vulnerable people. I ask the Minister of State to bring back to his colleague, the Minister of State, Deputy Finian McGrath, the urgent need to ensure that additional investment is put in place in the Cavan-Monaghan disability services and that we have a reasonable service. Nobody is looking for an extravagant service. We are looking for a very basic service. The hard-working, decent people I speak to, who give so much love, care and attention to their family on a 24-hour basis, demand very little. The least we could do as a society and an Oireachtas is provide a decent level of respite services for those people.

Deputy Jim Daly: Information on Jim Daly Zoom on Jim Daly I accept everything that Deputy Brendan Smith has said. I acknowledge that it is not just his right to raise this issue but his duty as a public representative. Our duty as a collective is to be there to be the voice of these families who do not have the time for the kind of advocacy they wish to do because they are caring full time. Respite is a basic fundamental service that any society should be in a position to provide, never mind a modern, progressive society such as we in Ireland thankfully are. The challenge is to continue to keep that focus on that vulnerable cohort and to ensure that we provide the necessary supports to families who need that respite. While we provide 182,000 respite nights a year, that is all well and good and it is to be acknowledged - I do not think anybody disputes how welcome it is - it clearly it is not enough because of the growing demand across both child and adult services, especially adult, with children moving into them. I will take what the Deputy said back. I welcome the airing that he has given to this issue. I, as a public representative, share his concern and wish to see the service greatly enhanced by all of us working together for the year ahead. I will take on board everything the Deputy has said and be sure to add my voice to that. I will speak with the Minister of State, Deputy Finian McGrath, to continue with the development of this service and its provision for those who need it.

Medicinal Products Availability

Deputy Pat Deering: Information on Patrick Deering Zoom on Patrick Deering I thank the Ceann Comhairle for choosing this topic. The availability of orphan drugs has come to my attention and has been mentioned many times in this House recently. Orphan drugs are drugs specifically designed to diagnose or prevent life-threatening or chronically debilitating rare diseases. An increasingly common issue in Ireland is that drugs fail to secure reimbursement from the HSE. Many of these drugs are available around Europe. In most cases, Ireland is the only country that does not have these drugs available. While not every orphan drug proposed to the State would represent a workable agreement, there are growing discrepancies in availability and barriers to providing the latest medicines available to cure these rare diseases.

While there has been a rare disease plan in place in Ireland since 2014, and the Joint Committee on Health has been dealing with this regularly, there appears to be a breakdown in communications. It is caught between two stools. The HSE has statutory responsibility for the pricing of medicines. However, the HSE is governed by a policy set by the Government through the Health (Pricing and Supply of Medical Goods) Act 2013. The drugs seem to be falling through these two cracks and one does not seem to know how to handle the other. A framework exists whereby the State and industry agree a timeframe but unfortunately we are left with a slow, cumbersome situation. The child who may have a difficult diagnosis or who has a disease who is waiting to be cured could unfortunately have passed away by the time the medicine is made available, which is difficult for the family, especially if it is a child.

Will the Minister of State look at this again and whether the process of making these drugs available could be more streamlined if they are suitable? They should not go through this protracted and drawn-out process whereby the child or person might be diagnosed today and the drug may not be made available for a couple of years. The only way to deal with a particular diagnosis is to give care and attention efficiently and quickly. It is important that we have a fast-track approach to this issue. A number of issues have been debated over a period in this House. Different drugs have become available around Europe but not here in Ireland. That must be addressed. We should be on the same playing field as everybody else. If somebody gets sick in Ireland and the drug has to be available here, that person should not have to go elsewhere to avail of it or to cure the illness he or she may have. Could the system be changed to make it more user-friendly so that the process of this drug being approved and reimbursed by the HSE and Government can be fast-tracked to make sure that the person who requires this medicine can get it when he or she wants it?

Deputy Jim Daly: Information on Jim Daly Zoom on Jim Daly I thank Deputy Deering for raising this issue. I appreciate that a rare disease diagnosis places enormous stress on patients and their families and, as Deputy Deering is aware, access to potentially beneficial medicines for the treatment of rare diseases is extremely important for patients and their families.

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