Debate contribution: Respite Provision: South Eastern Health and Social Care Trust

Debate contribution by Mrs Michelle Guy on 8 April 2025.

MLA

Mrs Michelle Guy

Party at the time

Alliance Party

Date

8 April 2025

Type

Debate contribution

Business

Adjournment

Heading

Respite Provision: South Eastern Health and Social Care Trust

Assembly identifier

Official Report component 4920005

Read the official Assembly record

Text

Thank you, Mr Deputy Speaker. I will speak on behalf of families in Lagan Valley and the South Eastern Health and Social Care Trust area who are desperate for respite services. Not only are those families being failed by our system but they are being traumatised by it. I have been privileged to speak to many families who have been impacted on by this. They love their family members dearly, they are experts in caring for them and they are simply asking for some support. When describing their experiences, families have expressed to me feeling threatened, manipulated and misled by their interactions with the South Eastern Trust. Others have spoken of a get-it-spent culture that creates wastage and focuses energy on quick-win-style solutions aimed at making the numbers look good rather than meaningful interventions that will make a real difference. A lack of strategic thinking and a failure by trusts to work collaboratively in a focused way to solve the acute and specific issues of overnight respite completes the picture. Families recognise that most staff are doing their best — in fact, many go above and beyond in really challenging circumstances — so they are very much looking up the chain for accountability, action and, importantly, leadership. Minister, families recognise that you have personally met them and organisations supporting them recently and have made commitments in relation to pressing for a culture shift in the trust. That is welcome, but the level of mistrust that exists will only be overcome by delivery, not warm words. Starting with my constituency, Minister, I know that you visited Lagan Valley in relation to adult services back in January at the invitation of my colleague David Honeyford. Preceding that, respite services were stood up again at the Hillhall facility in November. The families benefiting from that are grateful, but what is amazing about this community of families is their deep empathy and willingness to support each other. Each of those carers has a unique understanding of the pressure that other families are under, and they have been keen to speak to me as passionately about the needs of others as for themselves. One family told of their relief to now have respite on a monthly basis restored but were quick to highlight very elderly carers, including one in their 80s who has gone for a year with no break. However, such is their lack of trust in the system, they expressed concern that the help that they are now receiving could be withdrawn or reduced suddenly. Their specific concern is that the boost in adult provision is only being sustained by slippage in restoring services for children with complex needs. How is that possible? Minister, I hope that you can provide an assurance today that a feared trade-off between adult and children's services will not materialise and there will be no rollback of restored services in Lagan Valley or the South Eastern Trust. That concern is not without reasonable foundation, because it is the case that money allocated in the previous financial year for children's services did go unspent. The catalyst for that investment announcement was the BBC documentary 'I Am Not Okay', which provided a shocking insight into the experience and daily challenges of four mums as they care for their much-loved autistic sons who have extremely complex and challenging behaviours. Your response to the public outcry was to announce a welcome commitment of £2 million in emergency funding for respite care, followed by a commitment of £13 million annually to expand services. The families featured in the programme, and others in similar situations, felt relieved that, with that investment, something was going to change. However, not all the £2 million was spent, and what was spent was invested in increasing some therapeutic services and early intervention rather than addressing the current and acute needs. As one person explained, parental classes or early intervention measures are no use to a teenager with profound needs deemed to be on the edge of care. They need respite, and watching limited money that was meant to support them be spent on other things was exasperating and compounded their sense that their children, as one mother put it, are the forgotten children. Minister, when you made your announcement, you created an expectation of improvement in a matter of months. The latest position that I have been given from the South Eastern Trust is that 83 children with disabilities, whom we know of, are waiting on a residential short break and that many who have been promised one have had short breaks cancelled at short notice. It remains the position that Lindsay House is unavailable for respite and that Redwood will not open until September, leaving families with the prospect of a summer without support. Families have also asked about capacity at Greenhill, specifically about an additional chalet that they were told will not now go forward. They were offered no explanation for that. Even if all those facilities were opened and staffed tomorrow, it would be doubtful that the capacity that they offer would meet demand. The question that many are asking is why the response to the crisis is not regional in nature, such is the level of crisis, and most families could not care less about trust boundaries and are willing to travel to access support. The sense among families is that trusts continue to have a silo mentality and that firm direction needs to come from the Department that trusts must collaborate better and be solutions-focused, with the interests of the children and their families at the centre of resource planning. In the meantime, families have told me of their fear of admitting how bad things have become, in case that is weaponised. In conversations with families, they have told how raising concerns is met with the threat of their children being moved out of jurisdiction, and some have told how they have been accused of abandoning their child simply for asking for help. Others have told of being patronised or having their child placed on the child protection register, which implies that they, as a parent, are a risk to their child when, in fact, they have been hospitalised following an assault by their child. Some of the parents have expressed some cautious optimism that people are saying the right things now, but they have been let down many times already and remain scarred as a result of the toxic culture. One outworking of that culture is a likely under-representation of the number of families on the edge of care. That is currently 81 in the South Eastern Trust, but some families are aware that they are not counted in the figure because their request has been categorised as "parental request" rather than "assessed need". If the orientation is child-centred, it is in no one's best interests to underestimate the true level of need.

I thank the Member for her intervention. I absolutely echo her words. That exact concern has been expressed to me: parents have raised that same issue of getting access to a social worker and, even if they do, getting the help that they need. I thank the Member for that; I appreciate it. In the Minister's funding announcement in October, he, rightly, identified workforce as a key barrier to progress — one that needs to be tackled head-on, with improved pay and terms and conditions to attract people to the roles. Connected to workforce is the fact that, increasingly, our special schools are providing de facto respite for children, as there is no other outlet available to give parents a break. Staff in those settings are doing all that they can, but they are ill-equipped to deal with such complex needs. Indeed, some families have built up £10,000 to £12,000 in direct payments instead of respite, where there are no suitable services to spend it on. I also had one family reach out to say that they had found someone to accept direct payments for overnight support in the home, but their request for additional direct payments to cover that was yet to be assessed and was initially dismissed. Such examples really jar, because the problem of sourcing and employing resource — to compensate for system failures — has been pushed back to the families, only for them to be presented with a "Computer says no" response. I can say with certainty that the Minister feels the same level of compassion and concern in his dealings with these families as other Members and I do. However, the difference between us is that he has the power to act. Members have been afforded a platform, tonight, to speak on behalf of the families; to tell their stories; to ask that the Minister gives clear direction and timelines to the South Eastern Trust and every trust for delivery for these families; and to ask that, going forward, all carers are treated with the level of respect, dignity and professionalism that is befitting of the pressures that they are living with as they care for their cherished loved ones.

1,517 words. Text as published by the Northern Ireland Assembly.

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