Devoted mum, gran and sister Helen McAleer died at the age of 74 on Friday, April 3, having been diagnosed with an inoperable brain tumour last year.
Heartfelt messages have been shared about the Paisley woman – an unwavering campaigner in the movement to protect services for her daughter Amanda and her friends.
Not least from her husband and best friend John, whom she had first met in primary school and married in 1972.
He described her as someone who spoke up for carers, had a “passion for helping others” and enjoyed being out in the fresh air.
John said: “This is obviously a very sad time for our family but Helen’s reach and influence went beyond our family.
“Helen was a friend to many in the learning disabled community, providing positive friendship, respect, support and constructive advice to the learning disabled and their carers.
“Helen believed in acting to get positive results. She never sat back and waited.
“She was the convenor of Greensyde Carers and was well-known across Renfrewshire for her passion for those she represented.
“Helen was an active and very able advocate for the learning disabled community and for the wider community of carers.
“She was asked to become the first carers’ representative on the new integration joint board (IJB) for Renfrewshire Health and Social Care Partnership in 2014. She accepted the role which she carried out very effectively for two terms.
“Helen spoke up for carers and the wider community in a sensible and sensitive manner, without fear or favour, on a number of topics where she was always knowledgeable about the topic and in command of the facts and figures involved.
“She made positive interventions and helped significantly to maintain and improve services.”
Helen was a leading voice as she, John and a number of others successfully fought the proposed amalgamation of the Mirin and Milldale centres which was rejected in 2024.
She then asked voting members of the IJB not to approve a redesign of the learning and physical disability day service model and review of respite provision in September.
At the time, she penned an open letter that bravely reflected on her diagnosis and what it had taught her, writing: “I’ve been given the opportunity to dip into the world of Amanda and her friends for a couple of weeks. I hope I learned well.
“It’s very scary without the support of your friends or family. Opening a door to a ward you don’t know and having to manually adjust your brain to get back to the correct chair or bed is very challenging when you’re on your own.
“A balance sheet is only a bit of paper. Lives, and the scaffolding required around some of the most vulnerable in society to help them live the best life possible for them, are in your hands.”
A stalemate followed and the redesign and respite proposals are among potential measures expected to be reconsidered at a future meeting.
John added: “I will try my best to continue Helen’s fight to maintain services for our loved ones in the learning disabled community.
“It’s the least I can do for her and for those for whom she willingly devoted her time and efforts.”
Councillor Iain McMillan, Labour group leader and member of the IJB, described Helen as “one of the most courageous people” he had ever met.
He added: “Helen fought hard for both carers and their loved ones and could be a formidable advocate for their cause.
“I came across her a number of years ago when I was convenor of social work.
“I was always happy to meet her and take her advice on issues as I know her points of view were always credible and heartfelt.
“She will be missed by all who knew her and my condolences go to her husband and family.”
Renfrewshire Carers Centre said it was “deeply saddened” to hear of Helen’s passing in a statement.
It added: “Helen was a former carers’ representative on Renfrewshire’s integration joint board and a founding member of the carers centre’s learning disability support group.
“Helen was warm, intelligent and full of humour, with a smile that could light up any room.
“She was also a determined and passionate advocate for the learning disabled community in Renfrewshire and she will be greatly missed by our staff and fellow group members.”
