“Oh, you’re such an actor...”
Those who knew him might have remembered his fondness for top hats and clown noses and laughs, but, right now, the nurse’s impatient remark was akin to a kick in the stomach for the nonagenarian who had once sworn by the wonderful care in this local hospital.
Tears rolled down his face after she had left, every bone in his shoulders and arms throbbing with pain after she had yanked him up to arrange his pillows. Though hard of hearing and almost blind, our 92-year-old friend still had a perfectly functioning mind.
“Did she think I was making that up?” he asked me in disbelief as I stood by the bed where he was trapped by a catheter causing severe pain.
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I was in some disbelief myself. My mother, also a nonagenarian, had received excellent treatment in the very same place only a few months before.
But my friend wasn’t meant to be in there at all – he had only asked for a precautionary X-ray after a fall. We had made a number of unsuccessful attempts to find out why he had been admitted in the first place, and why he was wearing a catheter and occupying a bed which he had not sought.
An informal chat with a friendly member of staff confirmed that they were over-stretched. The catheter was for their convenience – not having enough care assistants to supervise visits to the toilet.
Three weeks after mystery admission, we signed our friend out and took him home. By then, he also had a chest infection, had completely lost all mobility, had bed sores, mouth sores, and was in a very confused state. Signing him out in this state was an experience in itself, but a young doctor who tried to dissuade us said we were welcome to return at any time.
The discharge letter – which we had to request – bore little or no resemblance to our friend’s experience. During one of his more lucid moments back at home, he confirmed he was now too afraid to try to walk again, as he had fallen out of bed in hospital at least twice.
We set up our own home clinic, drawing on a superb combination of GP and public health nurse support and incredible carers. Unfortunately, the hospital trauma had broken his mind and spirit, and our friend died four months later.
News reports shortly after he passed from the recent Irish Medical Organisation (IMO) and Irish Nurses and Midwives Organisation conferences rang bells. The reports referred to exhausted medics and over-worked nurses having car crashes on the way home from long shifts.
We were having our own first-hand experience – as with many others – of what IMO president Dr John Cannon termed as “avoidable fatalities and poor health outcomes” due to overcrowding and understaffing in Irish hospitals.
Commenting on the IMO president’s comments on Newstalk’s Pat Kenny show, Dr Chris Luke, retired consultant in emergency medicine, spoke about the toll being taken on overworked “miserable, brutalised staff”.
None of this comes as any surprise to Majella Beattie of Care Champions. The voluntary group was formed during the Covid-19 pandemic to support family members of people living in nursing homes. It is now campaigning on a number of fronts, including the need for independent advocates for people in health settings.
Even before Covid, however, having access to the best of medical care – still very available in the Irish public health system – often required having good contacts, having a good advocate, or being fit enough to advocate for oneself.
Care Champions, along with several non-governmental organisations including Age Action Ireland, has been calling for a “care partner” scheme to be set up in Ireland which would enable residents in care – either in a nursing home or hospital – to have at least one advocate to support them.
As Beattie points out, care partners are now part of an accepted liaison system in many European countries. As early as September 2020, care partner arrangements were introduced in Northern Ireland as part of visiting guidance documents for hospitals, hospice and care homes.
Age Action Ireland head of advocacy and public affairs Celine Clarke says her organisation supports the “care champions” model. Existing patient advocacy supports provided by the Health Service Executive (HSE) are focused more on making a complaint after an event has occurred than on avoiding one in the first place, she says.
“The Assisted Decision Making Capacity Act 2015, which came into force on April 26th this year, is moving towards a more rights-based approach for people whose capacity may be limited, through a disability or an acquired brain injury, as it does empower people to appoint a decision maker,” she says.
However, Clarke says there is a need for one piece of legislation which empowers a nominated person to act as an advocate in a healthcare setting.
Lawyer Patricia Rickard-Clarke, who is acknowledged as having championed the Assisted Decision Making Capacity Act, says it took all of 20 years for same. As chairwoman of Safeguarding Ireland, the charity promoting protection of adults who may be subject to abuse, she identifies twin issues – there is still a lack of safeguarding legislation for adults, and the need for a cultural change in wider society.
“Yes, we now have legislation which safeguards those with limited capacity, but many people who have capacity find themselves in situations where their views are not respected or abused – whether it is with their place of care, or their finances,” she says. “Article 40.4.1 of our Constitution says no person can be detained without legal process, but we have no legislation underpinning that.
“And Safeguarding Ireland did a survey in 2020 which found that almost 60 per cent of people believed next of kin had the right to decide to send a family member to a nursing home without their consent even if the family member had the capacity to make the decision for themselves – so that is your cultural context. In hospitals, there is a huge bias towards sending older persons to nursing homes, rather than back home with HSE community support.
“While waiting for accommodation in a nursing home, people are sent to step-down facilities where there is a complete lack of proper therapy services for someone discharged from hospital.”
People of any age could really improve if those services were available in those first few critical weeks after a hospital discharge, she points out, and this is backed up by medical evidence.
Rickard-Clarke cites situations – familiar to anyone with an elderly relative – where senior citizens in health settings are put into incontinence wear very quickly, or fitted with a catheter with a risk of infection. “This is a huge abuse of dignity and hastens lack of independence,” she says. There needs to be a specific focus on the appropriate healthcare needs of older persons.
“The Covid-19 expert group raised issues of clinical oversight in nursing homes but this has not been progressed. The extent of clinical care needs of people in nursing homes should be recognised. Most people don’t know who to report to if they have concerns about abuse.
“We badly need adult safeguarding legislation, and a system of independent advocates, who are independent of family, the system and organisations so that people’s autonomy is respected – underpinned by law.”
Adult Safeguarding Legislation in the context of health and social care is on the 2023 summer legislative programme, after a Bill was introduced by former Independent senator Colette Kelleher in 2017. However, it needs to be more extensive to cover financial, sexual, coercive control and other forms of abuse, she says.
Celine Clarke of Age Action Ireland points out that this is not just a concern for senior citizens at a time when more people are living longer. It is an issue that affects anyone who might find themselves in hospital and unable to return home immediately, due to a road accident or other incidents.
The Irish Human Rights and Equality Commission has also called for the provision of independent advocates in a range of settings and with different groups. It has highlighted the need for access to legal representation, and to an independent complaints system.
Clarke anticipates the long-promised Commission on Care, which is part of the Programme for Government, will highlight these issues. In the meantime, a care champions system could be set up as part of hospital/care home guidelines, she says.
Asked to respond to the calls, the HSE cited the initiation of the new legislation for those with limited capacity, and said the HSE funded the Sage Advocacy charity, providing free and confidential advice.
Beattie believes “nothing happens in Ireland without legislation to underpin it”, and a care partner or advocacy system has to be put on a statutory footing. “We believe that under the Health Act, Minister Stephen Donnelly could very easily legislate for care partners.
“If any other section of society was having this experience, there’d be war,” Beattie says, observing that the media’s presentation of age issues with photographs of wrinkled hands or a person with a walking stick “doesn’t seem to help”.
Tips for navigating a care setting or hospital system
- If bringing an elderly/vulnerable person to hospital, ensure you have a letter from a GP stating that this patient needs a family support/liaison
- Bring existing prescribed medication
- Request compassionate visits
- If information from a ward is proving difficult to obtain, contact the hospital’s patient advocacy officer or social work department by email and by phone
- Take notes of everything, and request copies of scans
- If you have a safeguarding concern, contact your local HSE Safeguarding and Protection team – (details at hse.ie)
- Sage Advocacy provides a free and confidential information, advice and support service
- The Decision Support Service, established under the Assisted Decision-Making (Capacity) Act 2015, has useful links and information (see decisionsupportservice.ie)
