Saincheisteanna Tráthúla - Topical Issue Debate (Resumed)

Respite Care Services

I appreciate the Ceann Comhairle affording me the opportunity to raise this important matter. I am glad the Minister of State, Deputy Jim Daly, is taking it. Unfortunately, existing respite services across Cavan and Monaghan for persons with disabilities - both children and adults - are totally inadequate. Not enough resources are being devoted to this critical area, which is extremely important for many individuals and their families. There are not enough centres or enough personnel working in the existing centres. The services are underfunded, under-resourced and the personnel in them are working under great pressure.

I know many people who have family members accessing those services. Even though they would be disappointed with the limited time they get the opportunity to leave a son, a daughter or a sibling in those centres, the message I have heard at all times emphasises the respect the families have for the facilities and the personnel working in the centres. One gentleman told me today that he and his wife have wonderful respect for the services and the personnel who deliver the services, when they are available. The gentleman in question is of pension age. He and his wife have an adult child with a disability. On a number of occasions, their proposed respite was cancelled. The same person had hospital appointments to coincide with the respite period that was proposed for their child. It is very difficult for families when respite care that is promised for a certain number of weeks or for a few days is cancelled. The family member, who is the carer at home 99% of the time, may have a hospital appointment away from Cavan or Monaghan, usually in Dublin. This creates serious problems and literally a crisis for such families when proposed respite is cancelled.

There are only three centres across Cavan and Monaghan delivering these services. One of those is the Annalee View respite care centre in Cootehill, County Cavan. Families who have loved ones who have gone there for respite have told me they very much appreciate the commitment, hard work and professionalism of the staff at the centre, but they are not able to access it as they should be able to do so. There have been cancellations. There is no provision in Cavan-Monaghan for managing a crisis. If a crisis arises for some families, that entails cancellations of services and respite for other people.

A gentleman read a letter to me earlier. He stated that, in 2005, I had been given a reply by the HSE in respect of a question on the need to improve services. He reminded me that the level of services available in 2005 was much better than at present. Even at that time, the Department of Health and the HSE recognised that there was an immediate need to improve and extend the level of services available. There is an urgent need to ensure that adequate resources are provided to ensure that there is an increase in personnel delivering those critical services and that there are also extensions to the existing centres or new centres developed.

I referred to the Annalee View respite care centre in Cootehill, which offers services for both adults and children. Some people have suggested that children and adult services should be separate. However, regardless of the architecture in the delivery of services, we need a proper levels of services to ensure that those people are given that respite when they need it.

I am responding to this matter on behalf of my colleague, the Minister of State, Deputy Finian McGrath. I thank the Deputy for raising it and for giving me the opportunity to outline the position regarding the provision of respite services in counties Cavan and Monaghan.

The Government’s ongoing priority is the safeguarding of vulnerable people in the care of the health service. We are committed to providing services and supports for people with disabilities which will empower them to live independent lives. The need for increased respite services is acknowledged and the HSE continues to work with all service providers to explore various ways of responding to this need in line with the budget available. As part of its ongoing service provision, this year the HSE will provide more than 182,000 respite nights and 42,500 day respite sessions to families in need right across the country.

There has been a significant improvement in respite services this year.

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.

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.

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

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?

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.

I want to assure Deputy Deering that the Minister for Health works tirelessly to address issues around access for patients to new and innovative medicines. The Oireachtas has put in place a robust legal framework in the Health (Pricing and Supply of Medical Goods) Act 2013, which gives statutory powers to the HSE to assess and make decisions on the reimbursement of medicines, taking account of a range of objective factors and expert opinion, as appropriate. The Act specifies the criteria to be applied in the making of reimbursement decisions, to include the clinical and cost effectiveness of the product, the opportunity cost and the impact on resources that are available to the HSE.

While the 2013 Health Act does not include provision for a specific rule set when assessing orphan drugs, the HSE and the NCPE seek to take into account issues such as patient numbers and the nature of the condition to be treated when evaluating these medicines. The criteria that apply to the evaluation process allow sufficient scope for the HSE to take on board the particular circumstances that pertain to orphan drugs. In reaching its decision, the HSE will examine all the relevant evidence and will take into account such expert opinions and recommendations that are appropriate, including from the NCPE.

The Deputy rightly identifies that increasingly drugs are being developed to target rare conditions and that these drugs often come with very high list prices. In that respect, the HSE is required under the Act to have regard to the funding challenges that these drugs represent. It does this by drawing on the criteria contained in the Health Act, including the potential or actual budget impact of the drug in question and the cost effectiveness of meeting health needs by supplying a particular item rather than providing other health services. These are difficult decisions but recognise the core challenges of the availability of finite resources in the face of ever competing demands. Since the signing of the four year framework agreement on the supply and pricing of medicines in 2016, a significant number of orphan drugs have been reimbursed by the State.

Notwithstanding the challenges which orphan drugs present and the fact that the HSE and NCPE are mindful of these issues when assessing orphan medicinal products, a number of changes have been introduced to address those challenges. In June 2018, a technology review committee for rare diseases was established. This committee is now operational and has already completed work in relation to orphan products. As well as examining the methodologies for assessing orphan drugs, it will also consider the views of patients, caregivers and examine the wider issues surrounding health technology assessments. In addition, the composition of the HSE drugs group is being expanded to include two representatives from the National Patients Forum and more clinical expertise in the area of rare disease. Both of these measures are intended to provide greater balance and transparency to the assessment process as a whole.

The challenge of accessing innovative medicines at affordable prices is one shared by most, if not all, developed countries. It is estimated that in the region of 45 new molecules are due to receive market authorisation in Europe each year over the next five years. It is in this high-tech space, including orphan drugs, that the greatest challenges will arise in the years ahead. A significant development in Ireland’s international agenda was joining the BeNeLuxA initiative on pharmaceutical policy in June 2018. This collaboration will support the Government's objective of co-operating with other European countries to identify workable solutions in an increasingly challenging environment to secure timely access for patients to new medicines, including orphan medicines, in an affordable and sustainable way.

I thank the Minister of State for his comprehensive reply. I welcome the initiatives commenced this year, in particular the review committee established in June but it is important a timeline is put in place for completion and publication of that review.

It is also important that these drugs are affordable and that the State is not in hock to, or taken advantage of by, the large pharmaceutical companies. Crucially, the people who need these drugs need them now because they may not be around in two years' time when they become available.

As I said, it is important the initiative announced earlier in the year is progressed more quickly such that if a new disease is identified and an adult or child needs drugs that will be of huge benefit to them, they can access them. I ask the Minister of State to ensure that a timeframe is set for completion of that initiative such that the process can be more efficient going forward.

I will take on the Deputy's challenge of putting in place a timeline for the range of initiatives outlined in my speech. There always will be tension between the State as the purchaser of important drugs and the giant pharmaceutical companies producing and supplying them, often for lottery type amounts of money. The State has to ensure affordability not only in terms of fiscal governance but to ensure they are available to everybody who needs them. If we pay over the odds for any particular drug we would limit the number of people who can avail of them. Notwithstanding those challenges, the Deputy has asked that we be more prescient in our timelines and I will pass on his request to the Minister.