Belfast Telegraph

Victims of rare diseases need a voice in province, say family campaigners

Disability Action has thrown its weight behind Belfast man Terry Hoey’s campaign to get greater recognition and swifter diagnoses of rare diseases in Northern Ireland.



Terry and his wife Maureen launched the Cavan Terry Hoey Trust to raise awareness of the problems facing affected families in the province after his grandson Cavan became ill. He organised the local event for Rare Disease Day on Monday, February 28.

Michelle Millar, outreach officer of Disability Action, said afterwards: “There needs to be awareness raising for people with rare diseases to have a voice.

“I would advocate more events like this to raise awareness; people with disabilities have the same rights as everyone else.

“Our work here is to support Terry and Maureen on Rare Disease Day.

“Today is about providing a platform to help fulfil the wish, hopes and desires of young children and their families who have to deal with rare diseases.

“We work with Terry on that — anything we can do to push this message across the province is worth it.

“While there is good work going on in north Belfast, the community is trying to work through issues of social deprivation and other issues and disability and rare diseases are lower down the list.”

Doctor Colin Harper, manager of Centre on Human rights for People with Disabilities, said: “Today is very much for the family members and carers.

“It was set up with a view to let them have their own say and have a voice on how services are delivered.

“There are 100,000 people in Northern Ireland who have a rare disease, but there may only be one person here who has one type of rare disease.

“Rare diseases services are very much under funded, health and social care services don’t expect to have to deal with rare diseases because there is no focus on them so people tend to fall between the services. He added that in the current climate, care for these people could drop even further.

Terry Hoey, event organiser, added:

“In Northern Ireland in particular, hospitals are behind the rest of the UK, it is provincial, everyone wants a hospital but we want specialisation.

“Rare diseases aren’t rare any more.

“I’m not for closing hospitals but I want modern equipment, and technology in them, just like if you go to Great Ormond Street, or Bristol\[Brian Orr\]bo hospital or Manchester.

“There are going to have to be tough decisions made, but they need made.”

He said there are children lying in hospital beds undiagnosed, all over Northern Ireland.

“We have to have a single voice, across Northern Ireland, to say enough is enough.

“As a small nation, we have to show the UK and the Republic that we’re here and our Health Service needs specialist medical treatment right away.”

He added: “We’re a caring society and these are children who suffer, not grown ups.

“They don’t have a voice, they can’t elect anyone. They need people like us to get the finger out and say, ‘We are going to do something about this’.”

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