Debate contribution: Domiciliary Care Packages: Northern Health and Social Care Trust

Debate contribution by Ms Emma Sheerin on 13 February 2024.

MLA

Ms Emma Sheerin

Party at the time

Sinn Féin

Date

13 February 2024

Type

Debate contribution

Business

Adjournment

Heading

Domiciliary Care Packages: Northern Health and Social Care Trust

Assembly identifier

Official Report component 4206523

Read the official Assembly record

Text

Gabhaim buíochas leis an Aire as bheith anseo inniu, agus déanaim comhghairdeas leis faoina phost úr. I thank you, Minister, for joining us this afternoon for this important debate. I congratulate you on your new role and wish you the best of luck. You have a mammoth task ahead of you, and I know that you do not take it lightly. Obviously, you have had experience in the role, and I appreciate that all parties have stated clearly that they want to work together to fix our health service. I have a strong commitment to that in my role. We can make no mistake about it: our health service is in crisis. The issue that I bring to you this afternoon is one that, you will recall, I have spoken to you about on countless occasions, and it is close to my heart. In the Northern Trust, our domiciliary care provision is in crisis, our respite services are in crisis and our unpaid carers at home are in crisis. You are probably aware that, as of November last year, a report concluded that there were over 1,700 people in the Northern Trust area waiting for a full or partial package of care. That is an area that covers from Coleraine to Galbally. That 1,700 figure is a massive number of people, but, in reality, it is only the tip of the iceberg. Each of those individuals has family, friends, neighbours and loved ones who are just as impacted on by the situation as they are. Of those 1,700 people, a portion will be stuck in hospital, in a clinical bed that they no longer need to be in, because they have received the medical attention that they needed but cannot leave that bed, because it is not safe for them to return home without a package of care. They are therefore taking up a hospital bed, and that adds to the pressure on them and their family, who want them home. A further cohort of those people, feeling pressurised by the trust to free up that bed, will have agreed to take a step-down bed in a nursing home facility. The nursing homes that we have across the North are fantastic, and the staff who work in them are brilliant, but they are just not the appropriate place for an awful lot of those individuals. That is particularly so in an area such as the one that I represent in Mid Ulster, which has a massive rural population. People who led independent, busy lives and who like to see green fields outside do not want to be in a nursing home. They want to be in the environment that they are used to, which is in their own home, where they are comfortable. There is a third cohort among those 1,700 people, and it is the people who are at home but are not fit to be there without a package of care. They are people who perhaps had a spell of illness and went into hospital and then returned home before they really should have or people who have not quite had to go to hospital but whose health has deteriorated and who are, as a result, unable to manage their homes as they used to. Their families, without any experience, training or expertise in caring, have become their carers because they feel obligated to. That leaves those people feeling pressurised to carry out that role and the people themselves feeling as though that they have become an inconvenience and a burden. Everybody is unhappy. That is something that is brought to me, as a constituency MLA, every week. Families are at their wits' end. People are run ragged. They are groups of siblings in their 30s, 40s or 50s who have, up until that point, led happy lives, all getting on with one another, having great relationships and coming together to celebrate occasions. They are not deciding on a Tuesday evening, "God, there's a shower of rain. I'm not going to go for a run tonight. I'll get a bag of goodies, call in with Mummy and sit for an hour and craic"; instead, there is a rota. They have to be there at a set time, and they have to leave to let somebody else in for their set time. Then somebody's son is going on a school trip, and they have to leave them to the airport. Suddenly, they are not able to fill their slot, and somebody else has to fill in for them. You have a situation where people are at each other's throats, and there is resentment and bickering. I have seen that in my extended family. We were lucky to have my two grandparents on my mother's side at home until they passed away. The family stepped up, and everybody did what they had to do, but it was always there, under the surface. There was a niggling annoyance that somebody was not doing what they should have been doing and somebody else was taking on more than their fair share of the responsibility. It is heartbreaking when people ring me with their stories and ask for help and my answer is, "I do not know when I will be able to secure that care package for you. I don't know. How long is a piece of string?". An awful lot of the time, the reality in rural situations is that you are waiting for somebody in the locality to pass away for a care package to be freed up. That is a terrible situation for everybody involved. I am not trying to exaggerate the situation or to prey on anyone's emotions, but, in the past week, two families for whom I was trying to secure care packages have contacted me to tell me that the people concerned had passed away before the care packages were delivered. Those are not conversations that I want to ever have again. It is not a nice situation to be in. I commend everyone in the trust. I am dealing with our local managers all the time. I am a torture: I know that, because I am contacting them all the time about this, but it is really frustrating. In rural areas, we know that this disproportionately impact on women, because invariably women take on the majority of the caring burden in the home. The vast majority of people who contact me will be the daughters, the daughters-in-law, the nieces, the sisters and the wives. It disproportionately impacts rural dwellers as well. An awful lot of the time, somebody who lives four, five or six miles out of the town will not be able to get a care package. The agencies and the trust staff cannot afford to carry out that visit because it costs money. That leaves families in a really terrible situation. The situation is exactly the same with respite services. We have families with children who have very challenging needs. I know that Rainbow Lodge has been closed since May 2023, which has left people without provision. Hollybank, which is in my constituency, has had to reduce its capacity in order to provide services for people with very complex and challenging behaviours. That leaves the people who were previously relying on the service unable to do so. One family who contacted me recently had, in the past, a situation where they would receive a calendar at the beginning of every year. They were going to get six stays over the course of the year, two or three of which would be for a week and the rest would be four or five day-long stays. They were able to plan a break away or a holiday and to go away and completely relax, switch off and know that their loved one was being cared for in an environment that was suitable for them and have that peace of mind. Now, their stays have been reduced to three nights maximum. They will, maybe, get four or five over the course of the year, if they are lucky, on an ad hoc basis. There is no forward planning and no knowing when they will have that break. There is a massive mental health impact on the carers and the people who have been put into that position and forced to take on a responsibility that they are not fully equipped to carry out. As well as dealing with the already daunting experience of having a loved one who has had a life-changing illness or has received a diagnosis of dementia or who has been in an accident that has completely reduced or removed their mobility, there is the emotional impact of seeing somebody becoming a shell of who they were. There is also the burden that, now, you are their carer. Sometimes, in conversations with people from the trust, they will talk to me about the carer's assessment and the fact that the family has to step up and provide the trust with details of when they will be there. Family time is so important, but it is not quality family time. You are not there to have a conversation with your loved one or to spend time with them in the way that you previously would have; you are now responsible for keeping that person alive. The burden that that imposes on people, particularly those with no caring background, is huge. I have raised this with you before, Minister, and, I suppose, what we want to see is a plan in place.

I know lots of carers, the people who have done this job, personally, and you will find that, with those who have done this work for any amount of time, their clients become friends. At Christmas, they go and buy them presents. They call in even when they are not supposed to be there, because they care about the people. They have a relationship with these families, and they want to see them happy and content. These people need to be treated fairly. They need to be paid better. Their work, which is a vocation and is skilled work, needs to be recognised as such. We need them to have their mileage covered so that we can afford to facilitate the remoter calls. We want to see a plan in place that will allow for recruitment and will retain those staff in the area. I have met Jennifer Welsh and the staff in the Northern Trust regularly. We always discuss this, and I know that they want to work with you, Minister, to do that. I appreciate you taking the time to listen to this, and I hope that we will see some movement for all who are affected.

1,796 words. Text as published by the Northern Ireland Assembly.

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