Mary Harte spoke to Claire Byrne about the urgent need to improve community-based care for patients with stroke, MS and acquired brain injury. Listen back above.

Former Labour Party senator Jimmy Harte suffered a traumatic brain injury back in 2013. He was left unable to speak, eat or walk independently. Following intensive rehabilitation and care from his family, he was walking with support and had begun to contribute sports articles to his local paper in Donegal. After clawing back so much of his former full and busy life, Jimmy's physical and mental recovery regressed and he entered nursing home care when he was barely 60. At 66, he still lives full-time in a nursing home.

Mary Harte, Jimmy's wife spoke to Claire Byrne about the missing links in care provided to patients with acquired brain injury. While praising the wonderful care her husband has recieved, she says the lack of wraparound care in the community mean that hard-won gains are easily lost:

"You go in the front door of the trauma centres in hospitals and national rehabilitation. And then you come out the back door to go home, and then you are left with this dearth of community rehabilitation services. You are really on your own."

Mary says the fight for services feels like being stuck in game where you can't control the outcome:

"If you can imagine a pinball machine and Jimmy is the ball. And I'm pulling the lever, hoping the ball will collide with as many different HSE health and social services in the pinball machine, before he falls down the drain of the machine. And it’s hit and miss."

Jimmy's gains began to fall away during COVID, when his mental health suffered and he got panic attacks. This led to knock-on behavioural changes and a deterioration in his physical health. Mary believes that the lack of community-based neuropsychology is one of the things that has led to her husband's setbacks:

"Jimmy's potential wasn’t lost because of the brain injury, by the way, it was lost because of the lack of community neuro-rehab services at local level. And that’s where we are falling down."

Mary fought for specialist services to be provided to Jimmy in the nursing home, with some success. She says that what benefits one patient can benefit many; as staff in the nursing home were exposed to treatments they hadn't used before, which could be applied more widely.

Jimmy's mood has improved and he is fully engaged with the world and people around him, Mary says:

"He still reads the newpapers, follows the news, follows politics. He's emotionally connected me and all the people that he knows and loves. Is he physically compromised? Absolutely. He's back in a wheelchair. His behaviour is generally OK, but yes, there are triggers that might set him off."

What Jimmy needs now, Mary believes, is to be able to access the kind of physical therapy that was available to him in the immediate aftermath of his injury - and to access these services in the community. To keep his mood stable and to regain some of his former movement, the neuropsychology piece of the picture is essential, Mary says:

"It's a specialised area acquired brain injury, they need to be trained in how to respond appropriately; whether it was behavioural outbursts or whether it was emotional distress. How to behave - what triggers - you need to know what the triggers are.

As well as the mental health piece, alternating rest with rehabilitation is essential, Mary says. She accepts the medical decision to allow Jimmy a less intense period of rehab, in order for the damaged brain to recover as much as possible. She says that interchange between rest and rehab needs to be built into the system, and allow for changes, depending on the progress of each patient:

"If services were flexible enough to go, OK, lets look at where he is now. Can we now get him back into the National Rehabilitation Hospital, now that he's much more supple and much more able than he was the first time he went in."

Mary says Jimmy has missed out as a result of this lack of flexibility:

"Had that been done two years ago, he'd be walking now."

Mary visits Jimmy almost every day - she only stays away if she has a cold or flu that could endanger the health of other nursing home residents. Once a week, Jimmy holds court in a local shopping centre, meeting friends and neighbours over a cappuchino. He is totally physically compromised, but he is still very much himself, Mary says:

"I love being in his company. He's great company. And he still has his sense of humour – he's never lost that."

Speaking on Today with Claire Byrne, Mary Harte addressed her local politicians and the next new health minister, appealing for a fresh look at the provision of joined-up services in the community:

"Get your finger out and start using those levers of power when you’re in Dáil Eireann and start pushing for proper all-inclusive individualised community-based rehabilitation services. Not just with acqquired brain injury. People with strokes, MS, Parkinsons – all of those. It’s not just Jimmy Harte. I’m hoping it’s not too late for Jimmy. I don’t think it is."