An "exhausted" mum and dad said they are "in crisis" due to the lack of carers available to help their disabled son.
Hari Jones has a rare genetic condition called myotubular myopathy which has left him unable to breathe properly and means he can't walk or sit up. The six-year-old spent the first four years of his life at Alder Hey Children's Hospital, during which time his parents Michael and Ellen Jones, who also have a 12-year-old daughter called Tiami, lived in hospital with him for large periods of time, North Wales Live reports.
However, they were allowed to bring Hari home to Caernarfon in Wales after they were given a house that was suitable for his needs. Michael said Hari's condition means he has to be fed through a tube which is fixed to his neck at all times and requires constant supervision in case the tube blocks or his breathing stops - something that can happen at any given moment.
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After Hari moved from Alder Hey back home in 2019, the family was assigned a care package which meant that carers would regularly visit their home to look after Hari. Carers would be allocated a day shift or a night shift - each one lasting 12 hours - due to the constant supervision necessitated by Hari's condition.
Over the course of last year, fewer carers would be available to look after Hari which meant the burden of care was increasingly placed on the shoulders of Michael and Ellen. Michael, 36, suffers from a serious illness himself - an undiagnosed disease which has left him with internal bleeding on several occasions - and has been in and out of hospital in recent years, having also been in a coma for a period in 2018.
'Ellen's working day and night'
Michael's condition, for which he receives treatment from the rare disease unit at a hospital in Birmingham, means that he is unable to take a hands-on role in the care of his son. As a result, his partner, Ellen, 32, does the majority of the care work. He said he has had to cancel important hospital appointments and has discharged himself from hospital a day after a procedure in the past due to Ellen being alone at home with no support while caring for Hari.
Michel said since the turn of the year, very little support has been available to the family and the conditions of the care package on which they relied are no longer being fulfilled. He claims this means that Hari's care has been left solely to Ellen for extended periods of time as she has been left with no choice but to take up both the day shift and the night shift herself for days on end, taking short naps in between while Michael keeps an eye on Hari. Over the next two weeks, only three days' worth of care has been assigned for Hari, meaning that Ellen will have to work day and night for the rest of this period, Michael said.
Betsi Cadwaladr University Health Board has said they are working very closely with the family, and were working to ensure they continued to receive the right support.
Speaking about the family's ordeal, Michael said: "From March last year, we began to highlight some of the issues with the care package we were on at the time with the health board because fewer and fewer carers were available for shifts. During that time, my partner Ellen had to work through it. It's 24 hour care and you can't expect one person to do that for long periods on end. She did that until Christmas when we had a big meeting with the company for which the carers worked.
"We were told at that point that a carer would be coming over to help over the holiday. That never happened, so we were without support for most of that period, and then in January, the company told us that they would be pulling out of the contract with immediate effect. Their contract with the health board was up for renewal at the end of March but they didn't have the capacity to offer the care for months before that.
Michael said: "Ellen has just come out of doing nine shifts in a row. The shifts used to be 12 hours when we had care, but now they last the whole day. I can't do much because of my condition but I keep an eye on Hari so Ellen can sleep but otherwise she's caring all the time."
Michael claims to have warned Betsi Cadwaladr University Health Board on numerous occasions last year over how their current situation would arise if no contingency plan was in place should something go wrong with their care package. He also claims to have been in touch with local MS Siân Gwenllian who he says has written to the health board many times, though no solution has been found.
Speaking about the issue, the MS said: "I have been privileged to know this family for a few years and I’ve been working with them to try to get the care and respite package that they need.
'Disappointing and frustrating'
"It’s disappointing and frustrating that no long term sustainable solution has been found but I’ll continue to support them and to work with them and the health board in pursuit of an answer to their problems."
According to Michael, the health board said it is unable to find a care company in Wales which could facilitate the family's needs. Michael claims that he has suggested a number of UK-based companies to the health board, all of which he says have told him they could provide the care needed, only for the health board to tell him differently, he claims.
The only options currently on the table for the family, Michael said, is to send Hari to a hospice in Chorley for days at a time for respite or to wait "nine months" until the health board organises an in-house solution for their care needs. The former, Michael said, is not an option because Hari has said that he does not want to go to a hospice and that Ellen would need to be with him regardless because of his specific needs.
The latter would mean that Ellen would have to continue to care for her son day and night most days for the best part of the year to come.
At the moment, Michael said that three carers are assigned to the family but this is "nowhere near enough" because they have other placements and are not available most of the time. The situation has left the family exhausted.
Michael said: "I'm on my knees asking for help" and that the current arrangement is "not feasible".
"We're like zombies, there's nothing you wouldn't do for your child but we're running on fumes. Ellen is sustained by adrenaline, she puts all her energy into caring for Hari, she doesn't have five minutes to leave the house.
"She has to constantly be on her A-game to keep Hari safe. She's in her pyjamas all day and will then jump into the shower before a few hours' asleep and then it all starts again.
'We need a solution now'
"Then there's me, I'm ill all the time so I'm putting more strain on her. That's difficult because I would love to be able to, as a father, help her and do as much as possible but I can't really take the strain off of her. It's like she's a single parent, the strain is all on her. The health board knows that. We're just asking for the care that he is supposed to have because the current situation is not feasible. There's going to be a breaking point soon, that's why I'm on my knees asking for help."
Michael added: "We just want to make memories as a family. Since 2016, between Hari and myself, this family has been on a rollercoaster when it comes to hospitals with having to go back and forth all the time. My daughter has had to grow up very fast and is missing out on time with us as a family. We're tired of spending every day fighting but we do it because it's what's keeping our son alive at the moment. We are desperate for help, we are in crisis and we need a solution now."
Christine Lynes, the health board's Area Nurse Director (West), said: “We are working very closely with Mr and Mrs Jones to ensure that the care provided for their son is appropriate, safe and meets the family’s preferred needs. We fully understand their concerns, and to ensure they continue to receive the right support, care is being provided by our own staff. We are in the process of recruiting additional members of the team.”
