A lack of enhanced respite care provision in the Southern Trust area was raised in a council chamber by the aunt of a young adult with complex needs..
Councillor Nuala McLernon issued an impassioned plea at last Thursday’s (March 28) monthly meeting of Mid Ulster District Council.
The Sinn Féin representative for Torrent DEA explained that her own sister – a single mother – is one such carer, as the parent of a young adult with complex needs.
She also recalled that Woodlawn House – an eight-bed Southern HSC Trust facility in Dungannon – was repurposed at short notice before last Christmas, which resulted in respite provision being cancelled for a number of families.
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Cllr McLernon’s plea came in the form of a motion, worded as follows: “This council recognises the inadequate provision of respite services with adults with learning difficulties, complex needs and challenging behaviour within the Southern Trust area.
“Acknowledges that in the Dungannon area of the Mid Ulster District Council, the only facility that provides short breaks for those who are 18 years and over with learning difficulties, complex needs and challenging behaviour is an eight-bed facility at Woodlawn House, Dungannon.
“Notes with deep regret the occasion that arose before Christmas 2023, that resulted in families having their respite provision cancelled at short notice by the Southern Health & Social Care Trust.
“Further acknowledges that respite provision is not a luxury, but a necessity for unpaid carers in our community.
“Further notes that the demand for services is increasing year on year, with more children with learning difficulties, complex needs and challenging behaviour entering into adult services.
“Recognises the hard-work, and dedication of staff members based at Woodlawn House in Dungannon, and all the staff throughout the Trust area who work with adults with learning difficulties, complex needs and challenging behaviour.
“Accepts the need to address the inadequate provision of adult respite provision in the Southern Health & Social Care Trust, and the need for forward planning, additional investment and ring-fencing of these services.
“Calls on the Minister of Health to develop a plan that will address the lack of adult respite provision within the Mid-Ulster District Council area.
“And further calls on the Minister of Health to provide additional investment into these services, to ensure that families can avail of more regular respite provision that is protected, and not at risk of cancellation.”
Introducing the notice of motion at the monthly meeting, Cllr McLernon said: “The issue of the lack of respite provision for adults with learning difficulties, complex needs and challenging behaviour has been well versed in the chamber by myself since elected.
“I know first hand the importance of such services, and the fact that respite provision is not a luxury for unpaid carers, but a necessity. It’s a lifeline.
“My own nephew, at the age of three, was unfortunate to succumb to a virus called encephalitis, which left him with brain damage, frontal temporal lobe damage and severe epilepsy.
“Now as an adult, my nephew suffers from learning difficulties, complex needs and challenging behaviour.
“My sister, his mom, a single parent, each day delivers the best care she can give to her son, but as an unpaid career she needs help.
“Like many others, respite provision for adults with complex needs and challenging behaviour is the help they need.
“To have this respite allows them to carry out their day-to-day small activities that we all take for granted, like going for a walk, going to the shops, having a cup of coffee with friends, or just basically relaxing and recharging from their day-to-day caring responsibilities.
“Last year before Christmas, we heard how the eight-bed facility in Woodlawn that provides short breaks of around a week for those with learning disabilities, complex needs and challenging behaviour, was unable to provide this service, due to those services needing to be redirected towards intensive individual support.
“This was a big blow to those families who relied on this service. To be told at short notice that your respite had been cancelled was gut-wrenching.
“As I’ve said previously, this is not a criticism of Woodlawn House or their staff. In fact, I cannot praise them enough for their work and dedication to the service users.
“This is the second time this incident has arisen within the Southern Trust, impacting the service users of Woodlawn House.
“It clearly shows the inadequate provision of respite services for adults with complex needs, challenging behaviour within the Trust area, and the need for more investment into these services.
“As indicated in the letter received from the Southern Trust, they too have said there is a demand for these services.
“Currently, the eight-bed facility that we have in Woodland House is not enough. As more and more children with learning difficulties, complex needs and challenging behaviour leave children services at the age of 18 and enter into adult services, how can an eight-bed facility cope with this demand? A demand that will increase year-on-year?
“How can all those families avail of a regular service of respite, and the lifeline that they need?
“The respite provision for adults has been for far too long underinvested, and we need to see the Minister of Health prioritise these services, to ensure that families can avail of more regular respite, and a service that can cope with the demand.
“We need to see additional investment from the Department of Health and more forward planning, so that regular provision is made available.
“We need to see these services protected and not at risk of cancellation.
“If the current situation continues, unpaid carers in our district will be among the first to pay the price, and that cannot happen. They can no longer be the last to receive the help they need.
“With the current situation, it must be concerning for unpaid carers and families constantly worrying about if something was to happen, such as of unforeseen sickness or bereavement.
“What would happen to their loved ones? What would they do? Who would care for them?
“For all those unpaid carers in our community who rely heavily on these services and who need a voice to speak up for them, I would ask all councillors here this evening to support this motion.”
Chair of Mid Ulster District Council, Councillor Dominic Molloy (Sinn Féin, Dungannon DEA) remarked that the Southern Trust had been very slow in responding to an initial letter outlining the council’s concerns: “Most alarmingly, it’s taken from a letter posted on July 31 of last year for a response to come back in February.
“It rings alarm bells for me in terms of how the Trust would address the issues.”
Councillor Deirdre Varsani (Sinn Féín, Dungannon DEA) spoke in support of the notice of motion: “I’d like to second the proposal and just to briefly add to what Cllr McLernon has said.
“Having spent 25 years in the education sector, it’s just heartbreaking at times listening to families struggling to get some respite, get a little bit of time to maybe look after other children, or have some time to themselves, and have proper care for the children who do have extra needs, which is not an easy task in itself as was alluded to earlier in the chamber.
“This is a highly qualified area, it can’t just be done by a random carer, so it’s a kind of niche area.”
Also in full agreement with the sentiment of the notice of motion was Councillor Clement Cuthbertson (DUP, Dungannon DEA): “I know it’s an issue that has been raised a few times, even when the Trust was here a couple of months back.
“I’m happy to support it. It is something that needs to be addressed and it is invaluable for the families that are in that situation.”
Councillor Barry Monteith (Independent, Dungannon DEA) praised Cllr McLernon for raising this issue on a regular basis: “I commend Cllr McLernon on bringing forward this tonight and on other nights.
“We are probably going to have to raise the temperature on this. The sad thing in this is that the love which the carers have for those that they’re caring for, is exploited and taken advantage of in these situations, because they know that these folks will find a way to cope.
“Many of us in this room take for granted the ability to plan going away for a weekend or taking a day out with the rest of the family and things like that. This is just not possible [for carers].
“Undoubtedly we need far more beds. I think everybody in this chamber will be fully supportive of the sentiments of the motion.”
Councillor Malachy Quinn (SDLP, Torrent DEA) explained that he too has relatives who require constant care: “I have two aunties with learning difficulties. My father is the carer for them. I know how difficult it is for him on a daily basis to continue to look after them, especially as he gets older, but he’s very lucky to have a very strong family support around him. His brothers, his sisters, his own family, and a lot of those with learning difficulties have great support behind them, but unfortunately, as Cllr Monteith said, that’s taken advantage of by the system.
“I know a lot who need respite, who need breaks away, it’s not an easy task, as much as you love those that you’re caring for.”
Vice-Chair of Mid Ulster District Council, Councillor Meta Graham (UUP, Clogher Valley DEA) claimed that respite care provision varied from Trust to Trust.
“There is indeed a totally inadequate provision of services for adults with learning disabilities, complex needs and challenging behaviour within the Southern Trust area, and there’s also a massive difference in what is offered in different Trusts.
“I know personally of several groups who have come into being due to the lack of facilities offered by the Trust, who are doing their best to try and bridge gaps, but unfortunately too many people inevitably fall through the cracks.
“So the UUP are happy to support the motion.”
There was unanimous support for the notice of motion, something which Cllr McLernon said she was delighted about: “I just would like to thank the councillors here tonight for their contributions and comments, and for supporting this motion.
“This is an emotive issue for unpaid carers in our communities, and for them seeing this motion passed here tonight unanimously will go to give them some reassurance that we have their back.”
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