Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Sharon Williams, project manager, Compassionate Communities; Thelma Abernethy, head of Cruse in the North; and Fiona Gilmour, Macmillan service improvement lead in the Northern Health and Social Care Trust. We have 45 minutes for this presentation, so I am going to hand over to you to make some brief introductory remarks, after which we will take questions from members.

Ms Sharon Williams (Compassionate Communities Northern Ireland): Thank you very much. First, we thank you for carrying out this inquiry. We appreciate the opportunity to present to you today and to supplement our written submission. We want to speak openly and honestly today about a difficult truth, which is that palliative care services in Northern Ireland are not meeting the needs of our people. We are here today to tell you about our experience, to amplify the voices that we have heard and to explore together how we can do this better.

Too many people are denied equitable access to palliative care, which is a fundamental human right, leading to needless suffering of patients and families. That service gap echoes across the system, intensifying pressure on emergency services, creating operational inefficiencies and undermining workforce well-being. For the purposes of today, we will address three key areas: public perception of palliative care services; fragmentation of services; and a whole-system approach solution.

First, on public perception of palliative care services, we want to impress on you the need for a public health approach to palliative care that addresses public awareness and education and requires a whole-system approach to care. The Compassionate Communities international movement is a public health approach focused on improving palliative and end-of-life care in communities. Compassionate Communities cares for people where they live, work, learn, pray and play. It emphasises a shared responsibility for care. Collaboration between local residents, organisations and healthcare services is seen as critical to enabling support for individuals and families facing serious illness, death and dying.

A 2025 position paper entitled 'Fostering Compassionate Communities: A Call to Transform Caregiving, Dying, Death and Grieving on the Island of Ireland' advocates for a coordinated, island-wide compassionate communities response. This report by Queen's University, produced in consultation with the public and people from the community and statutory sectors, recognises that north and south of the border share challenges around death and bereavement. North/South collaboration has begun, in line with public engagement, in areas such as advance care planning. However, further concerted support and action is needed.

Ensuring equitable access to quality palliative care is not the sole responsibility of the Department of Health; it is everyone's responsibility. Dying is not just biological; it is a significant social event that is inevitable for us all. As a society, with the medicalisation of dying and death, we have lost the meaning in normal dying when a death is expected, because it largely happens behind closed doors in hospitals. While it is appropriate for some of those deaths to happen in hospital, much more could be done to enable it to happen in a person's home if that is their preference.

A person cannot be simply viewed as an illness. Cancer does not just affect an organ, just as dementia does not just impair cognitive ability. Advanced illness impacts on every facet of a person's well-being: physical, emotional, social and spiritual. We need to be cognisant that it also affects the people who are important to the person who is ill. Care burden and burnout are well documented, and we know that Carers NI spoke to that a number of weeks ago. Added to that, practical issues such as financial hardship are common. Examples include loss of a household income, travel to appointments, time off work, the cost of running medical apparatus at home and keeping warm. People report feelings of loneliness and social isolation as they may need to withdraw from the workplace, lose their mobility and independence, or lose their role at home. Sadly, friends and family may stop calling as they think that people are busy with medical appointments and they do not want to intrude, or they simply cannot cope with the illness and impending death.

Professor Alan Kellehear, founder of the Compassionate Communities movement, references the 95% rule. The assumption held in communities is that a person living with advanced illness or frailty spends 95% of their time with healthcare professionals. Conversely, typically, they spend 5% of their time receiving treatment and 95% of their time in their homes and communities. The ageing population in Northern Ireland is increasing, with many living alone with only their radio, TV or perhaps a pet for company. Loneliness and social isolation are known to be as detrimental to health as smoking 15 cigarettes a day.

Secondly, we want to impress on you the impact of accessing care and support in a fragmented palliative care system. Navigating a complex system at a time of crisis further compounds an already overwhelming situation. The person who is ill or their family feel alone and wonder how they are going to cope. They do not understand the difference between generalist and specialist palliative care services, nor do they understand how to contact those services. Many people in the community do not know that their district nurse is their palliative care key worker and what they can do for them, nor do they know who to contact out of hours or even if there is going to be help available. That complex, siloed system often results in poor communication between service providers and patients. Sadly, as a result of that, person-centred care is compromised and there may not be timely access to care. That, in turn, causes increased anxiety and frustration with the system. There is an extra layer of complexity for people living in rural communities, people with intellectual disability or severe mental illness, and people living in seldom-heard communities.

To help us understand the scale of need, we can apply a simple equation. The total population of Northern Ireland stands at around two million. Approximately 1% of the population dies each year. That means that around 20,000 people will die in 2025. Referencing Marie Curie's research, it is estimated that one in four people who would benefit from palliative care will not receive it. Therefore, it can be deduced that, this year, 5,000 people will potentially miss the opportunity of receiving holistic care, including symptom management, improving quality of life and a good death. That experience is likely to have a significant impact on the well-being of family and carers. It is critical that the family's mental, physical and spiritual needs are supported throughout the palliative and end-of-life care journey. Cruse estimates that six people are significantly impacted on by each death. It is therefore likely that, in 2025, around 120,000 people will be impacted on by bereavement. The majority of those people will be supported in their communities, and some will require professional help.

Public understanding of palliative care and bereavement remains low, and, although awareness is slowly improving, many still equate palliative care to cancer or dying. The consequence is that people living with other life-limiting illnesses, such as COPD, dementia or heart failure, whose quality of life could have been improved earlier in their illness, sometimes access palliative care only at the very end of their life. Some people are reluctant to accept palliative care, as they have misconceptions of what it is. For example, the syringe driver is perceived as a form of euthanasia; palliative care is thought to mean that all active treatment will stop; and there is a reluctance to start morphine for pain management for fear of becoming addicted. One important initiative that is aimed at improving health and death literacy is the development of the 12 death-positive libraries in Northern Ireland. They host resources on dying, death and bereavement that include easy-read and children's books. That initiative relies on charitable funds and requires mainstream funding.

Significant gaps exist in bereavement education and awareness across many sectors. Marie Curie's report 'Compassionate Schools Communities' highlights the profound impact that bereavement can have on young people. It reveals that 78% of school-leavers who have experienced loss struggle academically, face challenges with their mental health and may exhibit worrying behaviours. Creating environments that guide our children through palliative care, dying, death and bereavement is essential for nurturing resilience in our future generations whilst protecting teachers' well-being. The National Lottery has funded Cruse to develop a range of evidence-based interventions on bereavement for children and young people that it delivers in schools and community settings. It is critical that that work is mainstreamed for funding. Recently, the Northern Trust established a compassionate schools working group to bring together all the stakeholders to explore that work further.

Marie Curie reports that 73% of people in Northern Ireland are unfamiliar with the term "advance care planning". To help address that, Compassionate Communities has been delivering advance care planning events in communities for three years. We are aware that healthcare professionals have already addressed the clinical component, yet, three years on, the Northern Ireland advance care planning policy for adults has yet to be implemented alongside the recommended summary plan for emergency care and treatment (ReSPECT). It is our experience that people often worry about the financial and legal components of advance care planning. Complex legal terminology and confusion between different jurisdictions are real barriers to people putting their house in order, such as writing their will or granting power of attorney. There is, of course, the reluctance to engage with this taboo subject. However, we find that, given the opportunity to talk about end of life through creative engagement, people find their voice and take the chance to work through challenging emotions. Some people are proactive. Compassionate Communities regularly receives requests for information on advance care planning. We have delivered numerous sessions to people living with dementia, Parkinson's or MS, front-line staff in the homeless community and healthcare professionals. It is imperative to embed advance care planning discussions into everyday life before a health crisis hits.

Thirdly, we hope that, through a whole-system approach, there will be a solution. Action and accountability are needed to implement recommendations in existing and relevant reports to meet current and future need. To achieve that, we recommend the following: prioritisation and funding of palliative care and bereavement services as an integral part of population health and well-being; a whole-system approach that is governed and mandated by a regional palliative care strategy; improved integration between Departments; full implementation of advance care planning that invests in public education; a public health approach to palliative care that delivers coordinated regional and all-island awareness campaigns; sustained investment in community organisations and support for unpaid carers, recognising them as essential providers of palliative care and bereavement support; adoption of the Compassionate Communities civic charter as part of the wider palliative care support infrastructure that provides public leadership, shared accountability and co-production; and the facilitation of a regional Compassionate Communities programme that enables the development of Compassionate Communities hubs in each trust area. We are hopeful that, as a result of the inquiry, available measures can be implemented immediately and that a long-term strategy can develop more equitable access to palliative care for everyone.

In conclusion, we reiterate that, individually and collectively, we are responsible for ensuring that expected deaths are experienced as good deaths. Just as it takes a village to raise a child, it takes a community to care for the dying.

The Chairperson (Mr McGuigan): Thank you very much, Sharon. That was very useful. We heard a lot of stuff there that perhaps we had not heard previously. Thank you all for your contribution and for coming before us.

You finished there with what you want to see, and you talked about the whole-system approach. What role do you see for the community sector in the whole-system approach? How can the health sector work with the community sector to ensure that we have the whole-system approach that you are talking about?

Ms Williams: There are sectors within the community sector that are already delivering on chronic pain management and other health and well-being initiatives, whose services, perhaps with a little bit more support, funding and security, could be extended, because they are in the communities. We have some 30 healthy living centres in Northern Ireland. They are the ones with the operational arm, but they need the support of the specialist services. They need the support to provide education on what bereavement looks like and what they can do among their local residents to support people to live as well as possible up until the point that they die.

The Chairperson (Mr McGuigan): You mentioned he Northern Trust model in particular. Can you give us a wee bit more detail about the work that it is doing and whether it is something that could and should be shared beyond the Northern Trust area?

Ms Fiona Gilmour (Northern Health and Social Care Trust): I work in the Northern Trust. We set up a Compassionate Communities steering group in 2017, with a wide range of key stakeholders from the community, voluntary and statutory sectors. We have used a variety of methods to try to get the message out, very much linking with our community groups, such as Arts Care. Sharon mentioned the creative message: we have used a local author to try to get the message out about the importance of planning ahead and planning for the future. Through a playwright, we delivered a play during Dying Matters Awareness Week, so we are trying to use a variety of methods.

I am trying to support the community sector, but we have a very finite resource, and this really does need to be resourced. I am not sure that all colleagues in the community sector have the confidence: they can talk about diabetes, obesity and things like that, but when you go to talk about death and dying, nobody wants to mention the D-word. There is a reluctance, so, again, it is about growing that confidence. Health cannot deliver this on its own. That is very much our collective message: we need to be working together; we need to collaborate. However, there needs to be investment and folk skilled up to deliver that message.

Mrs Dillon: Thank you very much, and apologies for not being there in person. I took a wee tumble down the steps at Stormont yesterday.

That was a very interesting presentation. There were a couple of things in it that we had not heard before, which was helpful. One of things that I was aware of, but had not heard anybody mention in presentations, is the piece that you talked about on education, our children and what is being delivered in our schools around preparing for death, but also what happens after a child has been bereaved and how they are supported in school. We all know what we are like as a people: we are great. We are great at rallying around, and everybody will be there for the family at the time of the wake, the funeral and all the rest, but we are not so good at being there during the lead-up to death. Life goes back to normal for everybody else, but not for the child. It is about making sure that there is something in place. We have had some good examples in our schools, some of them delivered by the Education Authority, but this work needs to be done, as you have outlined, in collaboration.

We need to get a sense of what is being provided at the minute from the Education end of things and what collaborative work is happening with the voluntary and community sector, such as the organisations that we are being presented to by today, and get an understanding of that. Are you able to give us any sense of that? This is not just something that anybody can deal with. You used a word that is extremely important, and we must never forget it in this: resilience. This is not just about letting children grieve. It is about allowing them to grieve in a way that allows them to become a resilient young person who can grieve openly and freely, but live afterwards. It is also worth mentioning that we need to remember that there are children in our schools who are themselves palliative. What is in place for those children and their peers?

Ms Thelma Abernethy (Cruse Bereavement Support): We have a service that is funded through the National Lottery, and we go into schools. Sometimes a school will bring us in after it has had a number of deaths of parents, grandparents or maybe even children from the school, be that sudden or unexpected or a death that they knew was going to happen. We also work alongside the Education Authority's critical incident response team. If there is a sudden unexpected death in a school, the critical team will go in and do what it has to do, and then it asks us to go in and spend time in the school. We will go in and do work with the teachers. We will provide them with a 90-minute session on understanding bereavement and how they look after themselves, but then also how they can care for the children and young people within the school. We will then do sessions with whatever classes have been affected. We have grief allies and grief buddies. Those services have been developed with young people. We have a youth advisory group that has helped us to develop those services. Everything that we deliver has come through that youth advisory group.

Those are the supports that we are providing into the schools. We also provide them in communities where there have been sudden unexpected deaths, through community groups, sports clubs etc. That has been funded. These services have developed over the past 20 years and have been completely funded by the National Lottery. We have not been able to get them streamlined, but there is a real need to get bereavement included. Having done the work in and around the palliative care review, I think it needs to be death, dying and bereavement. The three need to be put into the curriculum. We have worked with Marie Curie. We were involved in the initial pilot sessions on bereavement in the schools. That is where the learning came from. Now Marie Curie, and a number of other organisations, are trying to get it onto the school curriculum. It needs to be widened out to death, dying and bereavement, because when death and dying are managed and inclusive, it will make the bereavement journey a lot easier.

I will have a conversation with Marie Curie to see whether we can widen that out. We need to bring it in, because children will feel the impact of bereavement at some stage in their life, and we need to ensure that those supports are there.

Mrs Dillon: Thank you. You have kind of answered the question. I said that we should ask the Education Authority. I am aware of the critical incident team. I know the work that happens and how good it is, but I was not aware that it was yourselves. It is even really helpful to know that. I have used a lot of your tools to support constituents, including families who have children, so I can attest to the amazing work that is done, even with other children who are maybe not bereaved in that incident but have been bereaved previously. I know that you work with those children as well and that you know who to target when you go into a school. That is outstanding work.

The question that needs to be asked, Chair, is this: how does the EA intend to mainstream this into our education system? It is really important. We cannot hope for lottery funding. That is really good and we are very lucky to have it, but if we know that it works and know the impact that it is having, we cannot just hope that that will last for ever, because, like all funding, it will not last unless it is mainstreamed. That is the question that we want to ask the Education Department, Chair.

Ms Abernethy: It is critical that all schools have access, not just when they are impacted on. The Northern Trust has set up a working group on compassionate schools, but the challenge for everybody is resource, because resource needs to go in. We are a regional service, so we have to deliver right across Northern Ireland. We have limited resource that we can put in, so we are responding more when there is a crisis. We have an ambassador programme for children and young people, which we are piloting in schools at the moment. Through that, we help schools to set up a policy, and we then upskill some of the young people to be bereavement ambassadors. It will be interesting to see how that works. We are also working with parents to upskill them. If a child has been bereaved, we will work, first and foremost, with the parents and the significant adults in their lives, because if they are upskilled, given that they are with the children the most, they can support those children and understand how bereavement impacts on a child or young person. That gives the young person more coping skills, and, if we need to come in and provide one-to-one support, we can. It is very much about upskilling the people around the children and young people.

Mrs Dillon: That is one of the benefits, yes.

Ms Abernethy: Death is a natural part of life, and we have to have those discussions. People come to us after bereavement, but, if it has been a long journey or there have been challenging health issues towards the end of life, they are dealing not just with the loss of an individual but with the trauma of the health issues that they have witnessed. Think about COVID and the people who died in hospitals. I have never experienced such pain and grief. Some of those families are five years on, and it is a completely different way of working with people. That is where it really spoke to me. We need to ensure that it is not just about health professionals doing something; the families need to be actively involved.

DNRs are critical, and it is about ensuring that that is discussed earlier and not when the person is at a critical stage. We need to bring the whole making of wills upstream, because people come to us having been financially impacted on. People may have lost their homes and their income. All those things have an impact on grief. Although the person dies, the cost to the health service continues because the stress and strain that their family is under is significant. We need to pull it right back and make sure that the palliative care that is being given is inclusive and that the critical conversations are happening. Sharon talked about community organisations, and there is a role for them all to play. We need to ensure that the care planning strategy is funded now and moving forward, because it will make a significant difference to the future of the healthcare system. People have been impacted on by the lack of availability of palliative care for quite a few health conditions.

Mrs Dillon: Thank you very much.

Mr Donnelly: I declare an interest: as a nurse, I delivered general palliative care for quite a long time in hospital, and I also worked in the bereavement team in one of the trusts. Therefore, I am very aware of the benefits of palliative care and, specifically, more bereavement support.

I was interested to hear you talk about gaps in palliative care for specific communities, isolated older people in rural communities and homeless people. I think that the report mentions people in prison as well. Will you expand on those gaps?

Ms Williams: I work in the Western Trust even though Compassionate Communities NI has a regional approach. In rural Fermanagh, that is a challenge. Professor Max Watson presented to the inquiry, and I know that he sees the level of need and the number of older people who are living alone in rural communities. They do not have the same access to services because home care nurses have to travel greater distances to get from one person to another. There was a case in rural Fermanagh where they could not get a farmer to go into hospital to get treatment, whether it was for chemo or radiotherapy — I cannot remember — because, at the end of the day, he did not want to leave his farm because it was lambing season. That demonstrates the whole thing about there being specific needs in specific communities, and we need to be flexible to be able to adjust to that.

With regard to the homeless community, Compassionate Communities has delivered advance care planning to the Belfast inclusion health hub, and I have been into a number of homeless charities. A lot of it is to do with supporting front-line staff because they are seeing an increase in the number of older people who have been homeless and had those lifestyles. They, themselves, are witnessing friends in supported living who are dying and are facing challenging conversations about mortality and, maybe, making amends with family. A lot of that is going on, and there a lot more of it, and support staff need to be supported.

I spoke to the prisons community, and it is reporting that because its frail population happens from the age of 50, through lifestyle choices and what have you, prison guards are finding that they are undertaking more of a nursing role because inmates are living with comorbidities and losing their mobility and are more dependent on prison guards for support. I suppose that that is stretching their capacity to do other things.

A lot of it is coming down to capacity but also responding to specific communities and their needs.

Mr Donnelly: Thank you very much. Thelma, just to pick up on the question that Linda asked, where do bereavement services fit into the delivery of palliative care in a whole-system approach? Where do you see families and carers being supported?

Ms Abernethy: There needs to be support at every stage of a journey. Prior to the journey, because there is anticipatory grief that can be debilitating for people as they go through losing a loved one; information for people at the point of bereavement; and about six months after a bereavement can be a good time for people to start to avail themselves of one-to-one or group support. It depends on the needs of the individual. Currently, if people come through to us less than six months from the bereavement, we will encourage them to go to an Understanding your Bereavement seminar, which gives them an understanding of what bereavement is, how it can impact on them and how they can work through it. A lot of people will say, "You know what, that's helped me to understand that I'm not going mad".

Some people will come back after maybe six months, looking more support, which would be in one of our peer support groups or one-to-one support. Again, it depends on what our contracts are across Northern Ireland. We have a contract with each health trust, and some are very much one-to-one sessions, some are group support or Understanding your Bereavement, and some contracts are a three-step process: Understanding your Bereavement, peer support and then one-to-one.

Mr Donnelly: Do the health trust contracts mean that you deliver different types of support in different trust areas?

Ms Abernethy: Yes, one of those three models. Usually, it is one-to-one support, which is the higher tier, but people do need that as well.

Mr Donnelly: Can it only be accessed in certain trusts?

Ms Abernethy: No, we provide cover right across Northern Ireland. We have seven locations. We are in the Enniskillen and Omagh hospitals. In Foyle, we have premises on Bishop Street. We also have community venues in the Northern Trust, Bangor, Downpatrick, Belfast, Newry and the Moy.

Mr Donnelly: Thank you. I am very familiar with your work. People in my constituency, like in Linda's, have talked about how much you have helped them.

Ms Abernethy: Demand is high, and we cannot respond to the level of need that will come. The concern that I have is that we are starting to see the impact of people who were bereaved during the pandemic. That involves a completely different way of working. There is more group stuff. Again, we do not have the funding to deal with that need. A form of palliative care was used at end of life, but families were not part of it or were part of it through a screen. There are a lot of complexities there.

Mr Donnelly: It was a completely different death.

Ms Abernethy: It was the most painful work that I have ever done.

Ms Gilmour: Thelma represents Cruse, but bereavement support is provided by other professionals in the trusts, as you know, be they nursing staff or specialist social workers. Quite a bit of pre-bereavement work is done with children on the loss of their mum, dad or a grandparent. That bereavement work with children carries on for months, potentially, after the death of a loved one. There probably needs to be a more joined-up approach to it all.

Ms Williams: Foyle Hospice has Healing Hearts, which is a children's service that starts with anticipatory grief and hand-holds children through their grief.

Mr Donnelly: Alan and I went up and met the staff at Foyle Hospice. It is a fantastic service. It is really brilliant.

Ms Williams: They prepare the parents on how to break the news. They do creative engagement and create memory boxes and teddy bears out of clothes. Those are very precious and really anchor the grief in something very tangible.

Ms Abernethy: If we can get death, dying and bereavement in the school curriculum, it will make a big change in the future. We need to do that, instead of always dealing with a crisis. We need to start investing now, but we need a model for palliative care services that meets the needs of everybody. There needs to be a geographical spread, not a postcode lottery. Really good palliative care is being delivered, but, as Sharon said, not everybody gets access to it. Over the past year, getting support for people, especially older people who do not even live rurally, has been hit-and-miss. If someone has a stroke and then takes an infection, they have to go back and forth to hospital, which is costly, and ambulances have to be called. Whereas if the person gets support at home, they can be stabilised. We need to think about the impact on the family and the patient, the cost to the health service and the use of the Ambulance Service to bring somebody to hospital who probably could have been treated at home.

Mr Donnelly: We hear that again and again.

Ms Gilmour: When we deliver palliative care and end-of-life care, we can do it very well, and specialist services are involved. The legacy is that the family have a good experience, if you can say that. Unfortunately, at times, it is not a good experience for everybody. As Thelma highlighted, there are repercussions further down the line for a family if things did not go well. It is important to try to get it right.

The Chairperson (Mr McGuigan): It is indeed.

Mrs Dodds: I have a brief question. I have done some work with folk who are looking to get the issue of death, dying and bereavement in the school curriculum so that we can try to help children understand very difficult home situations. I know and accept that every child is an individual and every situation is individual, but, in your experience, does the support need to be provided very quickly afterwards, and do you need to continue to offer that kind of support?

Ms Abernethy: We always advise parents to be open with the child, use age-appropriate language, look at the various resources that can be used and keep talking about the person after they have died. Children will sometimes say, "I do not have a problem. The parents got me here." Parents will not always talk about the person who has died. Keeping alive the memory of the person is important. Parents must also tell children that some days will be good and others will not. Also, at different ages, children respond to bereavement differently. We try to give parents and main carers the basic information for working with children and young people. It is individual, but we need to support them and ensure that children are allowed to talk, or not talk, about the bereavement.

For the bereavement strategy, we are looking at a charter for children and young people. Following our conference in Stranmillis in September a year ago, Dr Patricia Donnelly said that we really need a bereavement charter for children. She has been working with children and young people across Northern Ireland to get that. In March, an event was held in Dungannon to look at what should be in the children's charter. We had about 100 young people in the room from across Northern Ireland.

We have the saying, "It is OK not to be OK." One of the young people who has come through our service, and initially would not have spoken to anybody, now, two years after their bereavement, was at the front of the meeting, delivering. I said, "Can I just finish by saying, 'It is also OK to be OK'", because you will have your good days. We need to remember that. We must create an environment in which children know that it is OK to talk about the bereavement, and it is OK to not.

Mrs Dodds: It is an incredibly difficult, sensitive subject. Thank you. You have brought a new perspective to us, which is really important as we consider what palliative care services look like in their totality and not just what medical interventions may be made and so on. We should look at the broader picture, so thank you.

I am also interested in how we get these services delivered equitably across Northern Ireland and to all communities. The stuff in your presentation around the various interest groups is also really important. So, thank you.

The Chairperson (Mr McGuigan): Witnesses are speaking into the microphone, but some of the members online say that you are difficult to hear. I think it is more a technical issue, but, if you can, please speak a wee bit louder into the microphones, and we will try to sort out our other sound issues.

Mr Robinson: Ladies, thank you for that presentation. It is of great interest. When Danny and Diane spoke about the various interest groups, it sprung to my mind that there is a growing group of foreign nationals in the Province. It reminded me of a case that I dealt with a year or two ago. A foreign national family had arrived on these shores and fallen on hard times. They had no knowledge of what to do or where to go to. They came to me, and I had to point them in countless directions in order to get them help and open various doors for them. Given that growing cohort of foreign nationals, who are very hard to reach, how do you reach out to them?

Ms Abernethy: We have funding through the Executive Office for working with people for whom English is not their first language. We are going into the fourth year of that funding. We changed the model last year to be more a group model in which we bring people together with interpreters. We try to make it culturally sensitive. People grieve differently in other cultures. We have been doing some of those group sessions in communities. We also use the funding to recruit volunteers from those communities, and we can train them to deliver the supports for bereavement into the community. It is a new piece of work that we are doing, and it is interesting to see what the need is. It is greater than we realise.

Hopefully, that approach will help us to build capacity, because we most certainly were not reaching people for whom English was not their first language until this pot of funding came through. This year, we will be recruiting a couple more volunteers from different communities that we have identified. Through the workshops that we have done with organisations, we have identified the individual communities that we need to be reaching into because there have been sudden, unexpected deaths. They also have the loss of loved ones. They are getting a message from home that somebody has died, so it is about how we create that support around them. We are looking at working with communities to do that.

Ms Gilmour: In the Northern Trust, we have had a few cases where English was not their first language. The district nurse is the palliative care key worker, so she was very much coordinating care. They have contacted our service on a few occasions to get different resources translated into their language. We have a booklet on palliative and end of life care services, so we got that translated, which was great. I suppose the only thing was that it took a bit of time. That was the downside. We try to respond where needed. In the Macmillan unit, nursing, chaplain and social work services have responded to need. We are trying our best, and I think that it is working out OK so far.

Ms Williams: We are also co-designing resources such an animations that try to translate complex terminology. We have been doing that over the past number of years. We have a number of animations and also face-to-camera videos from professionals from across the sector, whether that is a GP, a district nurse or a funeral director. They are hosted on a regional website, and we are continually adding to that and engaging through media and social media.

Mr Robinson: Thank you. That is very helpful. It is an added dimension to the other difficulties in palliative care that you mentioned n your report. Thank you. We appreciate that.

The Chairperson (Mr McGuigan): Ladies, thank you. I really appreciate it. This is a very important conversation and inquiry that we are having, and your part today has been very important and useful to us. Thank you very much for coming and for the work that you do.