‘It’s just me and Finn...’
What happens when home care doesn’t show up?
Issues around the HSE’s Home Support Care in County Cavan have been well documented over the last few months. But what happens when it’s your family that has been promised the hours and then the carer doesn’t show up? Or your carer takes sick leave or holidays and no replacement is available through the HSE or the agency it employs to provide the manpower?
For Bridgette Russell and her son Finn (23) who live in Virginia, the provision of care when it comes to holiday time and annual leave causes nothing but “stress and concern” in the home.
Bridgette is Finn’s full-time carer; he has Duchene Muscular Dystrophy (DMD), a rare neuromuscular disease that results in progressive deterioration in muscle strength and premature death.
“We were told life expectancy was 19 years and Finn is now 23 years’ old,” Bridgette told The Anglo-Celt this week. “It’s just the two of us living here in Virginia and I do everything for him. When he gets stressed, it comes back on to me and I have been fighting for everything he needs for years. I have fought and fought and fought.
“If he gets sick, other problems develop; he got sepsis once, that was terrifying... All the stress builds up in him - it’s an ongoing thing.”
Meanwhile, Finn receives home support care twice a day through an agency hired by the HSE, however, often there are no staff available to provide the care Finn needs - particularly when regular workers take annual leave.
The family gets one-hour of support care per day and 75 minutes’ shower time two days a week.
“We were getting afternoon calls but we don’t bother with them now because it’s not worth it for Finn and I’m here anyway; and then we get 45 minutes at night,” added his mum before highlighting how that care has been allocated to the family for a number of years now. Sometimes, Bridgette says they can get a call at the “last minute” to say there is no-one available to attend.
Bridgette has since changed agency in the hope things might improve.
“What I have learned now is that everytime one of Finn’s carers takes annual leave, I have to ring the HSE to try and sort cover out. I actually put a complaint in writing about this back in 2023. At the time, we had two HSE carers - one did the morning and the other did the evening - and they both got the same annual leave days off, which left us with nobody for three days,” she outlined.
* For HSE statement on the issues, see below *
“We have been left high and dry a few times and I have told them they were leaving a terminally ill person without care. Their response to me was to ask family members, friends or neighbours to help you out - now that just isn’t right.”
Bridgette, in fact, doesn’t have those supports… it’s just her and Finn; and her “lovely” neighbour who lends a hand when difficulties arise.
“I do have my neighbour who helps me out, she knows Finn and is very aware of how stressed he gets. I have no fault with any of the carers who come here; they are fantastic really but, when it’s constantly people who you don’t know and don’t understand Finn’s needs, it gets very difficult to deal with. And, also that is not fair on the carers either. As Finn’s mum, I place a lot of trust in the carers who come here.”The situation is causing a lot of stress in the family home and that results in additional problems for Finn.
“Finn gets upset over all this. I do understand if there aren’t carers there but, if somebody gives notice about annual leave or whatever, why can that not be addressed immediately? Why can the HSE not send the details to the agency and let them become aware of the fact that cover has to be organised in X amount of days, months or whatever it is?”
Solution
Bridgette believes there is a “breakdown” in communication between the HSE and the agencies it employs.
“It has to start improving for any solution to work,” she said. “These carers start their jobs and I sometimes wonder if they realise what they are coming into when they arrive at this house. It’s very difficult caring for someone who cannot move any part of their body, which Finn can’t.
“When I ask new carers here if they know about Finn’s situation they tell me they don’t and I find that very, very worrying. One of our carers told me the other day that she’s off for a few days in the coming weeks; I immediately rang the HSE and I have to wait for them to let me know if they have cover for when the carer is off. I dread annual leave and holiday time, I really do because you just do not know what is going to happen or how things are going to pan out, and the stress that brings in this house…”
She continued: “It would be a lot easier if people like me could just arrange cover through the carers we have; arrange everything between ourselves. Let the family and the carers work out what’s best for each other. That might also be a solution as well.”
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Some families waiting nine months for care
Loss of power
When the electricity went out during Storm Eowyn 10 weeks ago, the family was left without the power needed to run Finn’s life-saving medical equipment. “The ESB told me to bring Finn to hospital… I ended up hiring a generator so that we could keep his medical equipment working and that was all down to the kindness and generosity of the people around Virginia - I am very grateful to them all,” Bridgette added.
Finn himself said: I feel that they [HSE] don’t really care that much about me; if they send someone, they don’t have to care who they are; as long as they send someone it doesn’t matter.”
Representations
Cllr Noel Connell (SF) has raised the difficulties families in Co Cavan are experiencing with Home Support care on a number of occasions at local authority meetings. He says that, as well as Bridgette and Finn’s case, he knows elderly people who have been offered care hours by the HSE and, when the day comes for the carer to arrive, there is a “no show” and people are left “stranded” as a consequence.
More carers need to be employed; the workers are there and the HSE must have reserves in place when assigned carers don’t show up. I also believe there is a complete breakdown in communication on the part of the HSE and that needs to be addressed sooner rather than later.”
Meanwhile, in a letter from the HSE sent to Cllr Connell on January 13, 2025 - after the local authority called on the health body to provide more support for carers - Martin Collum, General Manager, Services for Older Persons, said that Cavan Monaghan Home Support was “currently working within their current resource allocation of Health Care Assistants - a Home Support under the 2024 Service Plan”.
“The annual leave guideline for all HCA-Home Support requires that requests for annual leave must be submitted four weeks in advance of the requested annual leave date. All staff are encouraged and reminded to avail of their annual leave; every effort is made to provide cover and when cover cannot be provided, families are advised.”
He also went on to say that “every effort” was made by the HSE to alleviate situations of stress and worry when HCA-Home Support is on leave. “If any HCA-Home Support is concerned about leaving a service user while on leave they should contact their Home Support resource manager so the service can be risk assessed and all available options examined e.g. respite care, transfer of another HCA-Home Support staff to cover,” Mr Collum added.
Increased demand has meant waiting lists have become a ‘feature’ - HSE statement
The Health Service Executive has admitted that waiting lists for home support have become a “feature” in County Cavan.
In a statement in response to a number of questions from The Anglo-Celt, the HSE affirmed that it does “not comment on individual cases”.
“The Home Support Service in Cavan/Monaghan is provided to people based on an individual assessment of need,” a spokesperson continued.
“The service works to maintain and support people at home amongst their family, friends and local community for as long as possible.
“The service is experiencing significant increased demand, which is made up of higher packages of care and more complex cases often requiring two health care assistants - Home Support - for each visit. Waiting lists for the service has become a feature.”
The HSE went on to say that priority is given to people who are medically discharged from acute hospitals and those with palliative and end-of-life need.
“The Home Support Service is provided directly by the HSE or on behalf of the HSE by homecare agencies approved via the Home Support Authorisation Scheme,” the statement continued. “The management and allocation of home support hours is managed by a multidisciplinary team within Community Services Cavan, Donegal, Leitrim, Monaghan, Sligo, to ensure that this key service is available at the required times, in a flexible way and at the appropriate standard to support clients’ assessed needs.”
The HSE also stated: “As part of the Home Support Annual Leave Policy, communications are issued to all service users to notify them that their HCA/Home Support Worker is on annual leave. Every effort is made by management to source cover, when cover cannot be provided families are advised. Staff rosters are continually reviewed and updated to ensure that the service is running at optimum capacity. “This allows for all available Home Support Hours to be distributed to our clients. Home Support managers continue to meet with the Home Support Care agencies in relation to targeting recruitment to those areas where attracting staff is a challenge. Significant work is also underway to address the challenges associated with capacity issues and carer availability.”