Families tell Up Close that system is 'stacked against' those with disabilities

By Carol Jordan

While the focus of our latest Up Close current affairs programme was direct payments, I have beencontacted by over one hundred families or carers who told me of varying issues with the health and social care system.

One consistent theme was the fact that they felt loved ones with disabilities, particularly those who are non-verbal, find it more difficult to access equitable healthcare that able-bodied people receive.Gwyneth McQuiston is responsible for the care package for her 65-year-old brother, Jeffrey, a role he took on when her mother died 43 years ago.

Jeffrey is non-verbal and has learning difficulties.

Gwyneth is firm in her assertion that those who are non-verbal can be prejudiced against when it comes to hospital treatment. She gives me a stark example.Over twenty years ago, when Jeffrey was living in an assisted living facility, he fell in the bath and required hospitalisation.

He needed an operation to repair his damaged kneecap.

In a matter of fact manner, she says: "When I went into recovery I said to the girl that he was in for a very long time and was he ok.

"She said well he had a palatectomy and I said what’s that and they said that well his knee cap had beenremoved... I was absolutely shocked. I suppose then in my naivety I asked them if they gave him a new kneecap. Did they replace it?"

The operation left Jeffrey immobile. In 2007, the family took a case against their Trust supported by the Equalities Commission on the basis that Jeffrey had been discriminated against because of his disability. They won.Jeffrey’s cousin Thomas is 10-years-old. Like Jeffrey he’s non-verbal and has learning difficulties as well as being on the autism spectrum.

In 2020, Thomas’s mum, Kirstie, told me that he started experiencing episodes. These episodes can be violent. The pictures that she showed me are too shocking to publish.

Since then Kirstie says she’s been battling to get Thomas the help she believes he needs… even going to far as to pay for a private MRI. The issue she says is that all the symptoms are put down to Thomas’s existing conditions.

An issue she says her other able bodied children wouldn’t face.

She says: "If we took them in aged 6 and we said this child has changed drastically or we said he’s falling over, he’s losing balance he’s having absence periods I feel they’d be investigated straight away. They’d be offered all the tests, whereas we have just been told his issues are a combination of his three diagnoses."

Q: You think he’s been treated like a second class citizen? "I just use that exact term all the time."

For Kirstie and Gwyneth, they say that the constant fight for services is exhausting and takes a toll.

Gwyneth: "I would dread to think what a learning disabled person would be treated like with nobodybeside them, and especially if they were non verbal."Kirstie: "It actually makes me worry too, because you have to come no people always tell me not toworry about the future ticket day by day.

"But you know, like there’s so many years between Jeff and Thomas, nothing’s changed. Is anything going to change in the next 20 years for Thomas?

"I think any parent with a child with learning difficulties, if we went first or something happened to us, that is the biggest fear, even if the system is fantastic, I’m just hoping that the system is so much better when we’re there, because at the minute, yes, he's only 11, but we are absolutely petrified of what’s beyond even the age of 18 for Thomas and no family should have to feel it's their fault."

A spokesperson for the Western Health and Social Care Trust (Western Trust) said: "We have met with the family to listen to their concerns and to agree a way forward and will continue to keep in contact with the family as we work to address any issues raised."“Due to patient confidentiality we are unable to provide any further detail.”

In a statement, the Department of Health said: "The Department is aware that that people with learning disabilities can face barriers in accessing general healthcare services, including GPs and hospitals. "It is critical that such services are reasonably adjusted to enable equity of access and equity of outcome. Such adjustments should also include specialist supports, such as annual health checks, health facilitation, health passports and hospital liaison services. "Earlier this month, the Department launched ‘Equity of Access and Outcome’ following the review of Learning Disability Nursing in Northern Ireland.

"Work is now underway to develop an implementation plan as part of a wider regional service model for those with learning disabilities."

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