Newtowncunningham woman with MND can't access care she 'desperately' needs as she's under 65

Olivia Robb, a 48-year-old mother of one, was diagnosed with MND in January and now needs constant care as her condition has ‘rapidly’ progressed.

Her husband, Brendan, has been caring for Olivia ‘24/7’ after giving up his job and she is ‘completely and utterly dependent’ on him and other family members.

Despite this, as Olivia is under the age of 65, she is not entitled to the same level of care, by the State, as someone over 65, the family said.

Due to her age, when Olivia was diagnosed, she was transferred over to the Physical and Sensory disabilities team. This mean that, automatically, she would not be entitled to the home help that someone over 65 receives.

Speaking to the Journal, Olivia’s sister-in-law Ailish Robb-Gardiner, said the Physical and Sensory Disabilities team were extremely helpful to the family, but only eight hours of care could be sourced.

Efforts were made to source more hours, but the ‘very best’ that could be secured was 25 hours. The family would be required to find and employ the private carers themselves.

Ailish told how they have ‘no idea where to start’ to find carers suitable to Olivia’s needs.

She outlined how Olivia needs 24/7 care, but, at the very least, requires two specialised and professional carers ‘to come in for a morning shift, maybe from 10 to 1, an evening slot and then a night slot’.

“Our hearts are broken. We have been fighting for this, more or less since Olivia was diagnosed. And her symptoms have deteriorated rapidly since then. Brendan is excellent – he’s doing as much as he can, 24 hours a day, seven days a week. I have never seen anyone as loyal. he has been exceptional, but he is also tired.”

Ailish added how, not only is there an issue with getting increased hours of care, there are also very few carers available.

"We are completely desperate at this stage, Brendan is a farmer and carpenter. Olivia and I worked in shops. We don’t know anything about hiring carers or what is needed. Nobody in the HSE profession is coming forward, even beyond their call of duty to help us in this desperate situation.

"To me, this is an emergency case. We need professional carers to help Olivia.

“Everything, from the start, has been a fight and nothing has come easily.

"The whole situation is hard enough, without them having to worry about getting help.”

The local community raised over 30,000 euro for the family for the costs they will accrue in relation to adapted transport, medical equipment and travel to and from hospital appointments, for which they are ‘very grateful’.

Ailish said these funds will also now have to be used to fund care for Olivia, if they are able to identify someone suitable.

In response to questions from the Journal, a HSE spokesperson said: “The HSE cannot comment on individual cases or details surrounding them when to do so might reveal information leading to identification of individuals thus breaching the ethical requirement on the HSE to observe its duty of confidentiality.”