Seanad debates
Tuesday, 21 May 2024
Nithe i dtosach suíonna - Commencement Matters
Health Services
1:00 pm
Mary Seery Kearney (Fine Gael)
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I thank the Minister of State for taking the time to come to the House to deal with this in person.
I am working with a family who are incredibly caring and supportive of their 29-year-old son and brother who is a ward of court and has been in the care of the State for some years, since he left school. He was undergoing treatment under the auspices of the HSE in Dublin. At times, that treatment was satisfactory but at other times it was not meeting his needs. A decision was taken by the HSE 18 months ago to transfer him to St. Andrew's Healthcare in the UK. He was first diagnosed with Asperger's syndrome and then with autism. Now, St. Andrew's Healthcare has advanced a diagnosis of autism and an intellectual disability. It is only in the last year that this diagnosis has been made.
The difficulty is that no one is liaising with this family and giving them feedback. There appears to be no care plan. The family goes over to England on a regular basis to visit him. They say the experience is like going to a prison, given the number of stages they have to go through before they get to visit their son and brother. He is very interested in sports but has no access to sport or to watching it on television. The progression markers are exceptionally low but when they ask questions, neither the HSE nor St. Andrew's Healthcare is responding to the family. This young man is in the process of coming out of the ward of court system and into the assisted decision-making system but that has proven to be a very complicated process. We have a 29-year-old man who believes that he is coming home soon. He was told by the HSE that we was going to the UK for two years. That two-year deadline is coming up shortly and he is obsessed with the idea that he is coming home then but nobody knows anything about it. He is not in a position to engage with the progress of his care or to know what exactly is happening and he is not getting any feedback. There is no point of contact for the family. They have no idea of the set-up and from a mental health perspective, their view is that he has deteriorated in that time.
This is the first I have heard of us sending people to the UK on a long-term basis. The treatment purchase scheme is fantastic but I was not aware that we were using it to this extent. I will hustle the ward of court people on his behalf but in terms of the health aspect, how is there no oversight, feedback or care plan? It seems that because he is 29, a decision has been made that his family does not merit any information. That seems a most extraordinary situation, especially as his diagnosis has changed. Perhaps that is to be applauded because there may have been an undiagnosed condition over his life to date. Maybe that is an indication of progress but nevertheless, his family members are taking the time and bearing the expense of going to the UK to visit him on a very regular basis but nobody feels any obligation to tell them anything about their son and brother. In that context, I am wondering about the structures within the HSE that would allow such a lack of oversight. It seems a most extraordinary situation.
Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator for raising this matter and for being so open in telling me of the diagnosis. Regrettably, before coming here today I did not know the diagnosis and did not know what treatment was being made available.
Mary Seery Kearney (Fine Gael)
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I only learned of it myself this morning.
Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator for raising this issue today. If the family are watching now or will watch the recording later, I acknowledge their involvement in their son's and brother's care. I have to apologise for the lack of engagement, communication and consultation with the family. I will take more details from the Senator when we finish. If there is a timeline, as has been put on it, and this young man wants to return home, as is his will and preference, that is what the decision support service is all about. That is the role of the DSS. I will work with the Senator on that. Timelines are important.
To get to the crux of the matter, while the HSE endeavours to provide services as close to home as possible, this can be challenging in residential placements. Demographic challenges associated with the increase in the number of people living with a disability, the increase in age and life expectancy and the changing needs of people with a disability have all led to the need for increased residential facilities. Residential services make up the largest part of specialist community-based disability services funding. As of March 2024, the HSE funds a total of 8,472 residential placements. I will get the information for the Senator on how many are in this jurisdiction, in Northern Ireland and in the UK. The HSE funds and works in partnership with organisations including section 38 and 39 organisations and out-of-State agencies to ensure the best level of service possible is provided to people with a disability and their families within the available resources. Regardless of the type of organisation or its location, mechanisms, safeguards and procedures are in place to provide assurances to the HSE and to support accountability processes for public expenditure on health and personal social services. As part of a HSE-wide requirement to ensure that appropriate governance arrangements underpin the release of the funding of agencies, a governance framework for funded agencies has been developed which ensures a consistent approach in this regard. The framework was introduced to implement the legislative provisions of the Health Act 2004 and to reflect requirements for public accountability where the HSE is legally obliged to account for all public expenditure on health and personal social services.
The framework seeks to provide a level of governance which links funding provided to a quantum of service and provides for these services to be linked to quality standards, with continuous monitoring to ensure equity, efficiency and effective use of available resources. The Regulation and Quality Improvement Authority, RQIA, is the independent body responsible for monitoring and inspecting the availability and quality of health and social care services in Northern Ireland and encouraging improvements in the quality of those services. Through its inspections, reviews and audits, the RQIA provides assurance about the quality of care, challenges poor practice, promotes improvement and safeguards the rights of service users. In the UK, the Care Quality Commission regulates all health and social care services in England. The commission ensures the quality and safety of care in hospitals, dentists, ambulances and care homes and the care given in people's own homes.
To be honest, I hear a lot about the framework but I do not hear about where the engagement takes place between the various bodies and families. That is the crux of the Senator's question and what we will have to seek the answers to - where the level of engagement, communication and consultation take place. While we have the frameworks, in practice, I do not feel or hear it in responses.
Martin Conway (Fine Gael)
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Before I bring Senator Seery Kearney back in, I welcome sixth class from Ballinalee National School in County Longford. They had a great win last night in the minors. I offer them huge congratulations. I particularly welcome Brendan Carrigy, the son of our colleague and friend, Senator Micheál Carrigy. Brendan is in sixth class. I hope they have a wonderful trip to Leinster House and that they find it informative. You will now hear Senator Seery Kearney posing a supplementary question to the Minister of State for disabilities.
Mary Seery Kearney (Fine Gael)
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I welcome the pupils and congratulate them. Senator Carrigy is a great colleague. I also say hello to Fintan. I know when the Minister of State makes a commitment, she always rises to the challenge of what is presented before her. She began by talking about the will and preference of this man being at the heart of this case, and I completely agree with that. However, a family needs to be prepared. The fact is that this man does not have a home to go to unless he is at home with his mother, father and brothers. The family needs to be supported. It may be that the determination of the HSE in sending him to St. Andrew's is that he needs to be kept on an extreme ward - the words used to me were that it was a very secure ward - but his preference is to be at home in his own house with his family. That may not be possible. The HSE needs to engage with the family.
I was 100% supportive of assisted decision-making, but there cannot be the complete exclusion of a family. It defies any logic and progress for the individual. Surely the two could be done in tandem to try to rise to the objective and outcome that the individual wants, while also preparing a family to support him. Bank accounts have been frozen. There are many issues. The man's mother saved money from her wages every week for all of his life. She cannot access that bank account to buy him a TV. What is happening appears to be peculiar to the fact that the man is a ward of court.
Martin Conway (Fine Gael)
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This is an extremely important issue.
Mary Seery Kearney (Fine Gael)
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There are peculiarities that, as I said, are lacking in any accountability. I accept that the Minister of State acknowledges that.
Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator. I take on board everything she has said. I would welcome working with her and assisting the family because this is an extreme case. When a person has to access residential care, that is extreme at any time. It is ten times more extreme when a person has to leave their jurisdiction in order to access care. It is my prerogative and that of the Government to ensure we provide residential care as close to home as possible so that people can continue their relationships. That is our priority.
While I understand the extremities of the case, it is important that the young man concerned is supported as close to home as possible. Consultation and communication needs to happen. Why would a mum not want to buy her son a TV or be able to have regular access to him? Why would a mum not want to see her son participate in sport? That is what we want for all of our children. I look forward to working with the Senator on this issue.