Waiting for help to move home: ‘The stress has taken a toll on my health. I am 36 but I feel like 66’

After a nine-year campaign, Geraldine Lavelle (36) got the key to her new home in May – but lack of care staff means the Mayo woman, who suffered a catastrophic spinal cord injury in 2013, doesn’t know when she can move in.

The writer, artist and disability rights campaigner initially thought when she moved into a Cheshire Ireland residential centre in Sligo in 2014 that she would be there for three months.

After fighting for almost a decade for a home in the community, she has moved most of her belongings including two wheelchairs, an exercise bike and many of her clothes to the house in Castlebar allocated to her by Mayo County Council. A removals truck had been booked for August 1st to ferry what remained from her Cheshire Ireland apartment to Castlebar. But on July 28th she got an email telling her the Irish Wheelchair Association (IWA), the agency which was to provide her with 56 hours a week of personal assistant (PA) care, could no longer do so “due to acute staff shortages”.

The IWA said this was following a recent resignation. The science graduate says she is “heartbroken” that her dream of living in the community rather than a residential setting seems as far away as ever. She did recently spend one night in the house in Castlebar “10 minutes from my family”.

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They had gathered there to celebrate her mother’s birthday. “It was lovely. We had birthday cake for Mam and all my nieces and nephews were there – but then I had to pack up my stuff and go back to Sligo.

“My family love the house and they are trying to keep me positive, saying ‘you are nearly there’. But it is mentally and physically draining. The stress has taken a toll on my health. I am 36 but I feel like 66.”

Now paying rent in both Sligo and Castlebar, she says she is “in limbo” and, even if another agency is identified to meet her home care needs, a long process of advertising for staff, doing interviews, Garda vetting and training will follow.

This is my life. I am sick of fighting for my rights. You are forgotten by the system unless you keep shouting

The Health Service Executive, having earlier this year offered 42 PA hours weekly, confirmed in May that the 56 hours deemed necessary by her consultant, and in a Cheshire Ireland care plan, would be allocated. “But I am back to square one,” said the University of Galway graduate who is paralysed from the chest down. Her book Weathering the Storm, published by Mayo Books Press last year, documents the challenges she faced after a life-altering road accident, but she is working on a second book detailing the ongoing battles since, which will be “more gritty”.

“I am 10 years stuck in the same situation. It’s so frustrating when you can see the finish line – it’s like waving a chocolate bar in front of a child and saying ‘you can’t have it’.”

[ Three-year catch-22 battle for a home after spinal injury ]

[ Life after a cycling accident: ‘My world changed in a heartbeat’ ]

Earlier this year, the HSE told politicians including Sinn Féin leader Mary Lou McDonald, who had lobbied on her behalf for an adequate home care package, that 42 PA hours “with smart technology” would be adequate, with, for example, online shopping an option. “Unfortunately, the PA budget, due to a lack of investment for many years, is extremely limited and therefore we try to allocate it as fairly as possible to as many people as we can,” the HSE advised.

“For someone who is three-quarters paralysed it is not really about shopping,” says Lavelle. “Can an online app help you to lie down on the couch for a rest and get back up again? Of course it can’t.”

Lavelle is aware of the recruitment issues, but says the system is flawed if there is no backup plan when a carer resigns. “This is my life. I am sick of fighting for my rights. You are forgotten by the system unless you keep shouting.”

Having been mentally prepared to mark upcoming milestones in her new home, such as her birthday in August and the 10th anniversary of her accident in October, she says those dreams have been dashed. “It would have been a nice end to a very hard decade.” Instead she says the house which she furnished is “just sitting there” with the oil tank full. She is dreading the day when she will have to arrange for her wheelchair and her clothes to be delivered back to Sligo.

“I had changed my GP and my pharmacy to Castlebar. All that took a few months. I now don’t have a doctor’s service in Sligo so if I need a prescription I have to get it faxed from Castlebar.”

Now suffering from an infection, Lavelle believes the stress is taking a toll on her body. “I just said to someone I am going to be dead before I get there. And I am not even joking.”

[ Greater safety measures needed for cyclists, says woman left paralysed ]

[ Geraldine Lavelle is determined to walk again after spinal injury ]

A spokeswoman for the IWA said it was not in a position to comment on individual cases. But she said the association had been highlighting to both the HSE and Government that until its staff got pay equality, “we will continue to struggle to provide services at the very high standard our members expect”. And the IWA would have “very little hope” of recruiting employees to provide new services into the future, she added.

Last year, IWA Siptu members staged a 24-hour work stoppage saying they hadn’t had a pay rise for 14 years and were being paid considerably less than HSE healthcare assistants doing “essentially the same job”. The IWA is contracted to provide services on behalf of the HSE for a funding grant in accordance with section 39 of the Health Act 2004.

Lavelle says she has been in touch with a private company about getting care in her new home and is liaising with the HSE about funding. “I don’t know how long the process will take so I’m still in the same situation I was in a year ago – but I’m now paying rent, [and for] electricity, oil, wifi, bins, home alarm system in my house in Castlebar. And paying rent and electricity in Sligo,” she said.

In a statement, the HSE said after the IWA staffing issue emerged, “expression of interest” requests had been sent to a number of care agencies in an endeavour to secure the home care package. In addition the possibility of providing a personalised budget to Lavelle so that she would be in a position to buy in her own care was being looked at.

“It is undoubtedly very disappointing for Ms Lavelle that her move home to Castlebar has been delayed due to staff shortages,” a spokesman said.

He added that until the appropriate care arrangement is organised, the IWA had staff available to support her to stay one night in Castlebar each week as an interim measure.