The HSE Confidential Recipient for Vulnerable Persons, Ms Leigh Gath, will leave her post in September. She told Catherine Reilly about the office’s impact to date.
The HSE should consider appointing a confidential recipient for vulnerable persons in each of the six planned regional health areas, according to Confidential Recipient Ms Leigh Gath.
The Confidential Recipient is “an independent person” appointed by the HSE to receive complaints and concerns (eg, allegations of abuse, negligence, mistreatment or poor care practices) in regard to older people and people with a disability accessing HSE and HSE-funded services.
Ms Gath told the Medical Independent (MI) that it is “an ideal time” for the HSE to examine expanding the office. She said the service was “well established” and “respected” in the HSE. It comprises of Ms Gath and one administrator covering the entire country. “I would absolutely love it if this office was bigger and we were able to have more of an effect.”
The HSE informed MI it was not planning to make “any additional confidential recipient appointments”.
In December 2014 the HSE announced the appointment of Ms Gath as the first Confidential Recipient. Ms Gath is a longstanding campaigner for the rights of people with a disability and a survivor of Thalidomide. Her appointment followed the abuse scandal at Áras Attracta, a HSE residence for people with an intellectual disability in Co Mayo.
As of 2021, the office had managed over 1,200 formal concerns/complaints since its inception (as well as hundreds of informal queries). The job is tough but fulfilling, according to Ms Gath. “I love when someone calls in and says, ‘I got what I needed.’ Oh my God, that just makes my day.”
She said the office’s independence has been respected by the HSE. “My office is very much independent. The only person I answer to is [CEO] Paul Reid. That is the only person that can, if he wants to, tell me what to do. And he never does tell me what to do.”
Mr Reid is due to step down from his post in October, however. Could a new CEO with a different style affect the office’s independence? “I have been through four so far and everyone has their own styles,” said Ms Gath, who maintained that the HSE has not interfered with her work throughout her tenure.
Ms Gath will not have an opportunity to work with Mr Reid’s successor, as she will leave her role at the end of September.
She commented: “When you hear the worst of the worst every day, there is only so long that you can do it before it is starting to impact on yourself. I think that after doing this job for almost eight years, I hope I have made a difference. When I started the job I was handed a blank sheet of paper basically and told ‘okay, this is what we don’t want to happen anymore, go make a job to make sure this doesn’t happen’. I was basically left to do the job description myself. I think the HSE over the years could have been more supportive – they are supportive now.”
This lack of support related to the level of engagement from senior managers within the organisation. “There has been, over the last few years, an increasing knowledge and support of this office from management. At the start, not so much, but over the last several years definitely.”
“But I think this office is not being used to the best of the ability that it could be. I think that really when these new six regional health departments come into being, that will be a perfect opportunity to have five other people in those health departments.”
In regard to promotion of the office, Ms Gath noted: “I don’t know if it is getting pushed by the HSE as hard as it could.”
Every concern/complaint that is received is reviewed by the Confidential Recipient to develop an understanding of the issues and whether these fall within the remit of the office.
For concerns falling within the remit of the Confidential Recipient, a decision is taken as to whom the concern should be referred. “This will generally be the Chief Officer of the Community Healthcare Organisation [CHO] within which the person at the centre of the concern is being cared for,” according to the 2021 annual report.
The Confidential Recipient may decide that certain matters do not fall within the remit of her office. “In these cases, the concern is passed to the appropriate responsible person in the HSE, for example Acute Operations or in the case of private nursing homes to HIQA, and the person raising the concern is advised accordingly.”
The Chief Officer or named delegate is responsible for ensuring the concern raised with the Confidential Recipient is thoroughly examined. In all cases, a written report outlining the interim or final outcome is required to be provided to the Confidential Recipient within 15 working days.
Last year 155 formal concerns/complaints were received relating to community services (compared to 165 in 2020). Of these, 137 related to disability services including older person services, 14 related to mental health, and four to primary care.
“Separately an additional 38 acute hospitals concerns were received and were directed to the National Director, Acute Operations, and 25 informal concerns were received, which did not require CHO involvement. No private nursing home concerns were received during 2021,” outlined the annual report.
During 2021, 124 (80 per cent) of the 155 concerns/complaints were closed and 56 (36 per cent) were closed out within one month.
The concerns were in two broad categories – ‘issues of care’ and ‘safeguarding’.
Issues of care include care placement/planning, level of staff to support clients, access to equipment, financial charges, accommodation, and respite. Last year 96 concerns/complaints in the community related to care issues.
Recurring themes included chronic staff shortages in residential and community-based settings, leading to people being moved to nursing homes (sometimes against their will) because their personal assistant (PA) or home support package hours could not be filled; and “serious hospital concerns” for people with disabilities and older people.
Safeguarding concerns/complaints include alleged abuse, safety of care, staff behaviour, and “family issues”. Last year 59 safeguarding concerns/complaints were received in relation to community services, with staff behaviour the largest volume reported (25).
An example provided in the annual report related to a young person with autism attending a day service. The young person had been locked in a room for an hour and the key could not be found. The young person was lying on the floor unable to be monitored through the window. After complaints were made about the service and staff behaviour, the young person was “eventually given a different service where they are much more settled and content”.
There is “still a massive shortage of feet on the ground”, which is impacting upon people’s independence, said Ms Gath. She said it appeared many care workers and PAs returned to their home countries during the pandemic. The societal shift to home working may have prompted some people to leave care and PA roles.
She said “very few” employers cover the petrol/diesel costs of PAs and carers and this must be addressed.
The shortfall of staff has meant a regression in independent living for people with a disability. “It is extremely frustrating to see people getting services and supports that will allow them [only] an existence. But there is a reason why about 75 per cent of my community are unemployed. Because how can you be employed if you need supports and you are only guaranteed someone to get you up in the morning when it suits them, not you? And to put you to bed at night when it suits them, not you?”
In many areas of the country, “the agencies that work for the HSE won’t have their staff out late at night. So adults are in bed by 7 or 8 o’clock at night against their wishes because there is nobody to put them to bed any later.”
“I think the Government need to legislate that people, if they need it and if they qualify, have the right to a PA service,” said Ms Gath. She also criticised lack of access to PA services for people over 65 who acquire a disability.
“They are only entitled to home supports or home help which will only help the person with personal care and will not allow them to go outside the home with their carer.
“I think it is a money-saving exercise because you don’t have to give people as many hours if you are only giving them hours to get up, get fed, and get washed and dressed and then get put back to bed at night. If it was social care in the truest sense instead of the medical model… and if it was genuinely letting people have a life instead of an existence, then the person would be assessed on the amount of hours they actually need in order to live. Not the amount of hours they need to exist.
“I don’t defend the HSE at all ever, but I have to say they don’t produce the money to make this happen, it is the Government through the Department of Health that produces the money to make this happen.”
While the HSE and politicians espouse the social model of disability and person-centred planning, “that doesn’t exist in many respects,” she outlined.
“If you are just getting minimal hours to let you exist there is nothing person-centred about that. The other thing is the institutions started closing after Áras Attracta, which can only be a good thing, that people are taken out of these high-walled institutions. But what is happening is they are being put into pretty, smaller institutions with flowers in the garden. Many people who are in residential and have mainly intellectual disabilities don’t get a choice of who they live with, they don’t get a choice of where they live, they don’t get a choice of getting up in the morning, they don’t get a choice of when they go to bed at night, they don’t get a choice of what they do with their day.
“So what is the difference in the lifestyle between a high-walled institution where 20 people might be sharing a room and a low-walled institution where you have your own bedroom, but your life is still laid out before you?
“I get concerns in from time to time from families of people with intellectual disabilities going ‘my brother or sister has lived in this house for many years along with these other two people’. Now without them even being told, another person is being moved in, this person screams and roars and has upset the entire balance of the house. Where are their rights?”
HIQA have… never picked up the phone [and said], ‘can we meet to see what each other is doing and to see how we can work together?’
Ms Gath acknowledged that certain organisations “are much better than others” and some individuals have their choices facilitated and respected.
She also told MI there was an urgent need for the Government and disability organisations to ‘future-proof’ the housing requirements of people with an intellectual disability as they age.
“These organisations and the Government – I cannot let Government off the hook here as they are the ones with the purse strings – they need to start future-proofing, thinking ahead…. The people in the HSE that are on the ground, they know all of this, they see all of this, and they are doing their very, very best in most instances I would say.”
People with a disability should be included on the HSE’s major decision-making committees, she added.
During the interview, Ms Gath also expressed concern about potential fragmentation or loss of services for people following the planned transfer of policy and funding responsibility for specialist community-based disability services to the Department of Children, Equality, Disability, Integration, and Youth.
MI asked Ms Gath about HSE management of serious abuse incidents and the level of transparency about these incidents. Recently, for example, there have been calls for the full release of the Brandon report to ensure knowledge and learning from the case.
Speaking generally, Ms Gath said there was a “very fine line” between “total transparency” in regard to what is published and the rights of the people who have been abused and their family. “Do their families want to be reading all about this in the newspapers; about their loved ones? Do they want to be reading if somebody was beaten up or sexually assaulted….”
She added: “These things shouldn’t be happening… but you look at the history of Ireland, you had the laundries, the mother and baby homes in Tuam and all the rest. Ireland has a history of taking advantage of the most vulnerable. I think we have come a long way, I really do, but I don’t think that that is something you are going to wipe out in a generation. I think it’s a cultural thing in many places – that is the way it has ‘always been done’. The amount of times I have heard people say that is unreal.”
Where abuse and safeguarding concerns have come to her office, Ms Gath said her experience is they have been investigated “thoroughly” by the HSE. She added that she reverts to the families or individuals who have reported the matter and ensures they have received a response from the HSE and are satisfied for her to close the case in her office. “Nine times out of 10, they are,” she said.
Concerns received by the office about private nursing homes are sent to HIQA. MI asked Ms Gath about her relationship with the Authority. She said that when Mr Phelim Quinn was CEO, HIQA made significant efforts to organise and agree a memorandum of understanding (MoU) with the office of the Confidential Recipient. “So that if something came in on private nursing homes my office would report it to them.”
However, this agreement has not worked well from her perspective. “I would have thought a memorandum of understanding would have worked two ways,” she commented.
Ms Gath said HIQA does not revert to her with information on the actions taken when she has relayed concerns/ complaints. She said this is unsatisfactory as she is unable to follow up with families. When she sends concerns/complaints to HIQA, she receives a computer-generated letter to say it has been sent to an inspector, and this is the extent of HIQA’s response, stated Ms Gath.
“HIQA never once came back to me, never. And I asked over and over again, look, can they relook at this so at least I can go back to the families and say, ‘they have looked at it, it is okay, it is being taken care of.’ But they never once came back and said that to me….
“HIQA have… never picked up the phone [and said], ‘can we meet to see what each other is doing and to see how we can work together?’ And that would be great, but they have never done that.”
According to HIQA, it had received one piece of information from the Confidential Recipient over the last 18 months. This information was “passed to the relevant inspector” and the Confidential Recipient was informed of this. “We have an MoU with the Confidential Recipient and we will be arranging a meeting for her with our new CEO and Chief Inspector.”
Ms Gath said when families contact her about private nursing homes, she now advises that they outline the concern/complaint in a registered letter to the private nursing home and copy this correspondence to HIQA. If they do not receive a prompt or adequate response, she advises they should contact the ombudsman’s office where the concern/complaint meets its remit.
The HSE is currently in the recruitment process for a new Confidential Recipient. Ms Gath was involved in writing the job description and is the interview panel. She advised that the next Confidential Recipient will “need to be able to stand firm and dig their heels in”.
“And if they know there is something wrong, even if they are being told that something is not wrong… they need to dig their heels in and keep shouting right to the top. I haven’t had to go to Paul Reid that often about anything, I really haven’t, because really it is about relationship building, and as you manage to build relationships with the people further down the line, the issues will be solved most of the time before you get up to that level. Relationship building is basically what this job is about.”
• The Office of the Confidential Recipient for Vulnerable Persons is currently based at Vocational Training Centre, Dooradoyle, Co Limerick. Telephone: 061 482605 or 087 665 7269. Email: firstname.lastname@example.org.