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Service delay 'It's ludicrous' - child with rare condition 'failed' by HSE delay in rolling out therapies

Lily McGrath (5) was diagnosed at birth with Activity-Dependent Neuroprotective (ADNP) syndrome which affects everything from her fine and gross motor skills to her language

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Lily McGrath (5) with her mother Emily

Lily McGrath (5) with her mother Emily

Lily McGrath (5) with her mother Emily

The mother of a child with a rare genetic condition has said the HSE is failing her daughter when it comes to providing services that she desperately needs.

Lily McGrath (5) was diagnosed at birth with Activity-Dependent Neuroprotective (ADNP) syndrome which affects everything from her fine and gross motor skills to her language.

She is pre-verbal with sensory issues and a learning disability. Lily did not walk until she was four and struggles with obsessive-compulsive disorder and anxiety issues.

She is one of just three children with the condition in Ireland. Lily, from Tramore, Co Waterford, has been on the HSE waiting list for occupational therapy since 2017, despite her assessment of need recommending supports in "every facet of her life".

However, a delay in rolling out the HSE's Progressing Disability Services (PDS), which will replace the School-Aged Disability Team, means she has not had any therapies in months.

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Lily McGrath with her parents Emily and Ciaran.

Lily McGrath with her parents Emily and Ciaran.

Lily McGrath with her parents Emily and Ciaran.

She has been discharged from the Early Intervention Team in anticipation of the new multi-disciplinary service kicking in.

Furthermore, in a situation that her mother Emily describes as "ludicrous", she was approved for an inter-disciplinary PDS team based in Dungarvan, which is nearly an hour's drive from her home.

This is despite the family living 12km from Waterford city, which will have two teams based there.

"It makes absolutely no sense. It means we would have to drive 40km for each appointment," Emily said.

After lobbying a number of politicians and joining a local campaign group for parents of children with additional needs, it was agreed that Lily could receive her supports in Waterford city instead.

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But Emily said the HSE building there was "totally unsuitable" as it is only used currently for speech-and-language therapy and is not fit for other services such as occupational therapy.

She said there are only two speech and language therapists currently recruited as the HSE struggles with a staffing crisis.

"It has small little offices and you could just about fit a swivel chair and a desk. It's allegedly just an interim option but it's inconceivable that you could run any therapy in there properly," she said.

The delay in rolling out the PDS is "very frustrating" for parents of children with ­additional needs, she said.

The service, which is meant to focus on accessibility, was due to begin in April but will only get going in August at the earliest.

"Lily would suffer quite badly from things like anxiety but she has never had access to a HSE psychologist," Emily said.

"For her to go to school this year, we couldn't get anyone to do an assessment so we had to pay for that privately which is €700. She goes to physio privately which is €80 a session and we pay €70 for occupational therapy.

While she supports the ethos of the new service, Emily worries that all it is doing is "creating a privatisation system which will eliminate any kind of support for children".

A HSE spokeswoman said children's disability services continued to provide supports despite the challenges encountered since the HSE cyber attack.

She said the HSE was fully committed to providing 100 additional multi-disciplinary posts within children's network teams to improve a range of therapies.

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