A Co Derry woman with Multiple Sclerosis is using a JustGiving page to pay for private carers after her local health trust said they can’t find anyone able to help her.
The Northern Health Trust has told Elaine Kennedy (55), from Coleraine, she will have to go into a nursing home, 26 miles away in Ballymena until they can source carers for her, or else foot the bill for care herself.
The private company previously employed by the Trust to put in four care visits daily to Ms Kennedy, walked out in October, claiming it was too expensive to care for the mum-of-two who is paralysed from the waist down.
“They were meant to be in for an hour, but sometimes they were taking an hour and 10 minutes or an hour and 20 minutes”, she said.
“It wouldn’t be much but sometimes it would take a wee bit longer because of my IBS or at other times because they sent over new carers so I’d have to show them what to do.
“The company said it was costing them money because the Trust only pays for exactly an hour and every time the call went over, they had to top that up for the carers.”
Elaine Kennedy with her daughter Lucy Bush
The Trust has since put in place a three-visit care package but this leaves Ms Kennedy unable to leave her bed for any reason from as early as mid-afternoon until around 10am the following morning.
This means the 55-year-old, who spent much of her life working as a manager in Boots before she was diagnosed with MS in 2004, has had to pay £800 per month to hire local carers privately for one care visit per day to put her to bed at night.
The family has been left shouldering the cost as the Trust requires all carers to hold Access NI clearance before it can issue payments, and has therefore refused to help cover the cost of the family’s private carers, who do not have the necessary paperwork and whom the family have no means of getting vetted.
Now, Ms Kennedy and her only daughter Lucy Bush have been forced to start an online fundraiser in a desperate bid to try and cover some of the costs of her mum’s care and keep her at home.
“The temporary company could only offer three calls and no bed call. So it was either go to bed at tea time or sort yourself out,” Ms Kennedy said.
“The tea-time call sometimes come at 4 or 4:30pm. If I went to bed, I could be left until 10 o’clock the next morning.
“I can’t get out of bed myself, I can’t go to the bathroom myself, it’s just not legally viable to leave you in bed that long with no care. So that’s why I had to get my own carers in at bedtime.”
Elaine Kennedy was diagnosed with MS in 2004
Meanwhile, the partial care regime put in place by the Trust since October is due to end at the beginning of December, and Ms Kennedy is now faced with paying for the entirety of her own care or being placed in a nursing home by the Trust for a the foreseeable future until they can put a care package in place.
“The trust told me I would have to go to a care home until they could find care. But I just couldn’t manage in one of those places,” she said.
“I’m not at the age or stage where I should be in such a facility. I just couldn’t cope.
“People that have gone in it before and it’s been five, six, seven, eight, nine months. It’s not a short-term fix. And it’s not a nearby care home, it is in Ballymena, 26 miles away.”
Ms Kennedy says the situation has caused her severe stress, anxiety, and a loss of independence.
“I haven’t been eating or sleeping with the worry of all this,” she said.
“I don’t know what the future holds for me, I’m just in complete limbo and I don’t know where to turn.
“The trust has this idea designed to ‘promote your independence,’ if you suffer from MS, but it doesn’t promote my independence—it feels like they’re taking it away.
“I’ve got MS, my mind is sound, but I’m being treated like I don’t matter anymore.”
The link for the family’s Just Giving page can be accessed at: https://www.justgiving.com/crowdfunding/lucy-bush
A Northern Health Trust spokesperson said: “We are continuing to work with Ms Kennedy’s family and our colleagues in the independent sector to secure an appropriate care package as soon as possible.
“While we will make every effort to provide a package of care that will allow Ms Kennedy to remain in her own home, we are making contingency arrangements for a bed to be provided in a community care setting, in the interim.
“We appreciate this is not the preferred option for the family and remain committed to securing a more suitable care arrangement.”