I think I may have no recourse here but wanted to know if anyone else whose parents live in Northern Ireland have experienced similar.
Mum has Parkinson's, Dad has Type 2 Diabetes, both recently diagnosed with Dementia in November & December 2025, mum definitely in early stages, dad slipping faster. Both in a nursing home since January 2024 and both want to move back home with a live-in carer, I want the same for them.
They both washed up in a nursing home not of their own choice last January. I live in London and had been diagnosed with breast cancer 4 months earlier. At the same time Mum had had a fall and been hospitalised for those 4 months where she started to become disorientated. Dad visited her 3 times a day battling with traffic, hospital car parks and in between managing his own diet and medication. By the end of the 4 months he was frayed, then a hypoglycaemic attack landed him in hospital for a fortnight. End of December mum was discharged to a nursing home, Dad joined her a few days later. The plan was for them to get back on their feet, eat, rest and plan a return home. Then the interim social worker got involved. She was against a return home, mum was too unstable and would fall. She relented, they went home in February, lasted 24 hours, Dad had another hypoglycaemic attack, spent all night awake in A&E, mum was driven back to the nursing home for the night. Next day Dad was at home alone having not slept, woke 3pm and had another hypoglycaemic attack and was taken back to A&E where he spent another sleepless night. A&E did nothing except monitor blood sugars. The social worker held a "Best Interests" meeting 27 February, I was in the middle of chemotherapy so joined by speaker phone. The social worker opened by saying "well it's safe to say the return home was a failure" and ploughed forward getting District Nurse, SW Manager and Home Manager to say the same, and they all agreed that Mum & Dad should stay in the nursing home permanently. They pretended to ask my opinion (I held back as was shocked and no time to think through an answer), Mum and Dad were horrified at being spoken about in such terms and said as much, and the decision was taken out of our hands.
By May, I had finished chemotherapy, had had double mastectomy followed by lymph node clearance, and a new permanent Social Worker had been assigned. After waiting for her to make contact I eventually made contact some time during the summer. I had a good impression of her over the phone, I told her Mum & Dad wanted to move back home with a live-in carer, she said "maybe we do need another Best Interests meeting", so I waited.
In August I had 3 weeks of radiotherapy. At same time my parents were assessed as "lacking capacity" and my Dad was no longer allowed his jaunts to the local garage to buy his paper, but they didn't tell him this. I did but neither believed me. A few weeks later he walked to the garage, he was found and brought back, staff reported he had "absconded" to the Social Worker. They then called an urgent "Best Interests" meeting (no. 2) for 22 October, but didn't tell me it was about moving them to a locked nursing home, instead I believed this was to finally discuss moving back home. The meeting was an ambush, mum and dad were not invited as I discovered at the start of the meeting, reason given was they lacked capacity to understand what was being said. Statements from my parents were read out in which mum was quoted "I know a return home is not realistic and I must not allow my daughter to steer my goals". Dad went along with mum and was quoted "I'll stay here". A few days later I asked mum about this, her jaw dropped, she said "she must have asked a very carefully worded question to get that out of me", and both were clear that this is not what they wanted. At the meeting I was asked with no warning to provide a water tight live-in care solution, put on the spot I couldn't, they decided live-in care was therefore not possible. The meeting concluded with all in agreement except me that a move to an EMI unit/dementia unit was the plan. A matter of weeks later both were diagnosed with early stage dementia.
9 December a further Best Interests meeting (no. 3) was held to get a unanimous decision to move them to an EMI/dementia unit. I had hired a solicitor who attended, 4 social workers, 2 physios, OT, a cast of a thousand, but not my parents. Social worker suggested moving temporarily to an EMI/dementia unit so they were locked up while discussions took place about a return home, also to install a downstairs bathroom. I stated downstairs bathroom was possible, but I was very concerned that another move to a place that was still not home would disorientate and distress them further, but was convinced by the social worker that she wholeheartedly agreed and that it would only be temporary. Christmas Eve mum and dad were moved. They have both declined since. No TV in their room, no access to newspapers, no help to find the channel they want to listen to news, no help to set up their CD player, no help to re-orientate my parents when disorientated, no access to the outside garden (which is secured), no help with hearing aids or glasses which are vital to maintain mental acuity. They are being allowed to slip.
23 January (yesterday) another meeting, originally I was told to invite the Live-In care providers. Found out 2 days before the meeting they were no longer invited and it was to discuss finance and care plans. Quick smart we forwarded care plans and costings. Opening questions were have you installed a downstairs bathroom, how much money do your parents have and what can they afford, and social workers insisted they would only allow them home with 2 live-in carers doubling the cost, also they should have enough for a year minimum, if only enough for 6 months the social worker said she would block a return home. The social workers hadn't even bothered to read the quotes sent to them. No quotes yet for downstairs bathroom as I was under impression it was not a condition for returning home, no access to parents bank accounts yet (slow solicitors), and I do not believe 2 carers are necessary, some of the other specialists back me in this, especially the one who sees my mum for weekly physio sessions.
The crux of the matter is that unlike mainland UK, Northern Ireland gives no authority to next of kin because the NI parliament did not sit since 2016 and their care provisions have not kept pace with mainland UK. In lieu of next of kin authority, care providers have instead Deprivation of Liberty Safeguards (DoLS), and they wield this. Social workers seem to have ultimate legal authority and threaten legal action if they do not get agreement from family. Additionally, these social workers have dragged their feet since taking over in May 2025. We are now facing more meetings to discuss returning home, meetings about meetings, etc. The lead social worker obviously doesn't know her facts but will talk around the houses to disguise the fact. She shouts down anyone who disagrees with her. All the social workers are defensive and are so unhelpful in discussions with me. I can see a time coming when my parents will not even remember they have a home to go to, let alone know they want to live in it.
My solicitor admits I just have to jump through the hoops they make for me, meantime he is getting written confirmation of my status as "Nominated Person". He is disgusted at the treatment given to both my parents and to me. The physio who said downstairs bathroom useful but not a condition and that parents need only one carer "and at that, minimally" suggested official complaints to 1) Director of Trust, 2) Commissioner for Older People, 3) RQIA, 4) MP. Said to say Trust is responsible for their decline, that instead of reducing their liability they have increased it by neglecting parents' cognitive well-being, and that the longer they remain in a locked dementia unit the more adverse the effect on their health. My solicitors advises against complaints procedure for now.
Has anyone experienced anything similar, can anyone suggest any possible way out of the deadlock? The social workers would like to lock them up and throw away the key. My parents are retired teachers, they have given to others all their working lives, paid their taxes, they are grandparents and have life to live. I cannot believe that this can happen in a 1st world country, I'm contemplating adding to my Will that social services never by default get their hands on me. This is a great advert for assisted dying.
Thank you for reading this.