Leigh Gath said inappropriate placements, in nursing homes and acute psychiatric services, had “a huge impact on quality of life”.
So too did the lack of respite care available to families caring for loved ones with significant intellectual disabilities, as outlined in her report for 2017, published yesterday.
This was putting them under “tremendous stress”, she said.
“Some of the people they care for require around-the-clock care and so the carers get little rest,” Ms Gath said.
Ms Gath said some people were not receiving adequate services, or may not be receiving any service, because funding has not been available to meet their needs.
Another recurring theme was the frustration experienced by members of the public who had attempted to contact the HSE or service provider to raise their concerns, only to receive no response.
“This can cause the families to mistrust the services or their local HSE offices,” Ms Gath said.
“If someone had called or written to these people in a timely manner then they would be happy (most of the time) to work with the HSE to solve their issues, even if it was going to take time.
“People need to feel they are being heard and listened to.”
Staff also had problems with being listened to when trying to raise concerns about services, Ms Gath said.
The number of staff coming forward to her office was on the rise, but most chose to remain anonymous for “fear of reprisal from their employers or other staff”.
“There’s been a culture of fear for years and years that something will happen to them if they come forward. It takes somebody very brave,” she said.
She said some staff who contacted her office had tried to report abuse initially using their own service protocols but felt “that they were either ignored or targeted for redeployment from their workplace or, had other apparent measures taken to discredit them”.
Ms Gath said she believed the complaints made to her office — just under 200 last year — were “the tip of the iceberg”.
The bulk of complaints related to social care services (169). Most of the remainder (22) related to mental health.
The type of concerns raised included safeguarding, client placement/planning, access to equipment, level of staff to support client, financial charges, staff behaviour, safety of care. Where concerns were raised in relation to alleged abuse this included physical, sexual, psychological, financial, neglect, discrimination and institutional.
Less than a quarter of complaints (23%) were closed within the required timeframe of 15 days.
Ms Gath said HSE response times in the past year “were not great” in some areas. She said the HSE was “sadly lacking” at times when it came to responding to complaints “not only in relation to people who make the complaint to them, but between the HSE and myself also”.
“It doesn’t mean they are not doing their job, they are just not picking up the phone to call me”.
In order to overcome such delays, bi-weekly teleconferences are now held with a national lead from the HSE, where open cases are discussed and in turn, requests for updates are directed to chief officers.
In some circumstances concerns were escalated to the National Office where Ms Gath deemed the action or response was not adequate, timely or appropriate.
Ms Gath said all anonymous concerns were resolved during 2017 to her satisfaction, except in two cases, which resulted in major investigations that are still on-going. In 23 instances, the concern/complaint could not be resolved to the satisfaction of the individual.
Ms Gath was appointed in 2014 to proactively be a voice for vulnerable adults with disabilities, or older persons who may otherwise not be heard by the HSE or other service providers.
Ruth finally found a place to live
Ruth, 52, has suffered with acquired brain injury for many years. For the last
10 years, her memory recall has been progressively deteriorating and she has needed intensive care and support to live a full life.
On May 3, 2016, she had a serious burn accident that set her back enormously. As a result of the injury, the care facility she was living in could no longer accommodate her as she required 24-hour care.
Having spent eight weeks in the National Burns Unit, Ruth was discharged to an acute hospital. The only option on offer was a nursing home.
Her family said this was unacceptable for a 52-year-old.
Ruth spent the next 18 months in a hospital bed while the family searched for funding and a suitable residential facility.
“The staff in the hospital were fantastic and a great support to us over the long 18 months but we were having no luck at all in securing funding for Ruth,” the family said.
Leigh Gath’s name was mentioned to them by the hospital social work manager and, in desperation, they contacted her.
“Once Leigh became involved she was able to carefully direct our journey through the HSE.
“She knew how things worked, the people who could make decisions and how Ruth’s application stood the best chance of being successful,” the family said.
“She contacted the relevant people and, most importantly, always stayed in contact with us making us feel very well supported.”
Ms Gath personally attended the family/hospital meetings, meeting Ruth and advising the family.
The family attribute her tenacity to helping secure funding for a place for Ruth: “Our sister is now in a residential facility and is settling into her new home. Without Leigh’s help, we believe we would still be searching for funding for a home for Ruth and, for this, we are eternally grateful.”
Voluntary patient but not ‘free’
John has been living in an acute psychiatric unit for the past five years. He is diagnosed as having an intellectual disability. According to the most recent correspondence that the family has, he ‘has no formal psychiatric illness’.
He is a ‘voluntary’ patient but if he was to try and leave the unit he would be stopped.
John has strong family support but they had not been included in care planning or future planning.
In fact, over the past five years, the only thing they have been told is that there is no suitable provider or place for him in the community.
John’s advocate says: “Consider for a moment if you were living in an environment for five years where the intention is to provide short-term care and support to people experiencing mental and emotional distress.
“This is an environment whose purpose is to provide support to the most distressed in our society when they are at the extremes of that distress and for as short a time as possible.
“Add to that, the struggles that may come if you struggle to process everyday events, you are separated from all that is familiar to you, where routine and familiarity are critical to your wellbeing and where you are not in a position to vocalise your feelings, your fears, your thoughts through verbal language. This is where John has been for the past five years.”
Independent advocacy support has assisted in ensuring that John’s voice is heard, but progress has been slow.
John’s advocate brought his story to Leigh Gath.
“Things are beginning to happen.
“A potential residential service provider has been identified, but even with the intervention of the confidential recipient’s office, John is still inappropriately placed in a psychiatric unit,” his advocate said.