The following amendment has been selected: amendment 1 in the name of Siân Gwenllian.

Item 6 on the agenda is the Welsh Conservatives debate, and it's support for palliative care during the pandemic. I call on Mark Isherwood to move the motion. 

Motion NDM7581 Mark Isherwood

To propose that the Senedd:

1. Notes that the Office of National Statistics recorded 37,403 deaths in Wales in 2020.

2. Acknowledges the impact of the COVID-19 pandemic on those providing end-of-life care and those who are terminally ill and their loved ones, particularly given coronavirus restrictions on visits to hospitals, hospices and care homes.

3. Recognises the vital importance of high quality palliative care and bereavement support services under such circumstances.

4. Notes the Royal College of Nurses Wales's concerns regarding nurses being exhausted, stressed and near burnout due to the pandemic and the additional pressure of providing end-of-life care.

5. Calls on the Welsh Government to:

a) keep under review the guidance associated with visits to hospitals, hospices and care homes, so that families and operators are able to enable safe and compassionate contact during end-of-life care;

b) ensure that those who are approaching the end of their lives, as well as their loved ones, have access to high-quality care and emotional support;

c) significantly increase financial support for palliative care and bereavement support services in the next financial year to meet the increased, and more complex needs arising from the pandemic; and

d) implement a long-term plan to support nurses and care staff to deal with post-traumatic stress and mental health issues caused by the increased requirement for palliative care.

Motion moved.

In focusing on the need to support palliative care in the pandemic, our motion both acknowledges the impact of the COVID-19 pandemic on those providing end-of-life care and those who are terminally ill and their loved ones, and recognises the vital importance of high-quality palliative care and bereavement support services. 

Palliative and end-of-life care has never been as important as now. Whether dying of COVID-19 or other terminal and life-shortening conditions, people require expert palliative and end-of-life care. The acute rise in deaths related to the pandemic has increased the need for hospice and palliative care, on top of an already increasing need, with annual deaths under normal circumstances already projected to increase by 25 per cent over the next 20 years. As Marie Curie state, even before the pandemic one in four people didn't get the care or support they needed at the end of their lives. People are living longer with multiple conditions, and now our world contains a virus that could force any one of us to face our own mortality sooner than we expected. 

As Hospice UK state, during the pandemic Wales has seen a 10 per cent increase in deaths, and every person dying from COVID-19 could benefit from palliative and end-of-life care. Hospices and NHS palliative care services have provided continuity of care to people with terminal and life-limiting conditions throughout the pandemic. In some cases, front-line hospice staff have been amongst the only health and care professionals in contact with people as they approach the end of their lives. While many people want to die in their own homes, for some the hospice is their preferred place of care and, for many, it may not be possible or practical to be supported to die in their own home, highlighting the importance of hospice in-patient units also. Throughout the pandemic, hospices have been proactive in ensuring their communities have access to their in-patient services, providing specialist end-of-life care or crisis care should they need them. Nightingale House Hospice in Wrexham changed its referral process so that people or their families could self-refer into their care, as well as maintaining traditional routes of professional referral. Instead of closing, the hospice effectively opened up access to its care.

In April 2020, the Welsh Government announced up to £6.3 million to support continued core clinical hospice care, and develop hospice bereavement care, recognising the essential care provided by hospices when no alternative NHS provision is in place, care primarily funded through charitable donations. In 2019, hospices needed to fundraise £33.3 million to supplement the £5.7 million they received from statutory sources. Although the Welsh Government allocated £6.3 million to the hospice emergency fund, this is less generous than equivalent funds in all other UK nations, and falls significantly short of the total allocated to the Welsh Government in consequential funding from the UK Government's support for hospices in England. 

There has been no confirmed additional support for hospices in Wales to maintain their essential services during 2020-21, and they're facing a combined shortfall of £4.2 million by March, next month. However, hospice and community palliative care services are still providing vital face-to-face care to people. More people are being cared for at the end of life in their own homes, and this when extended families and friends aren't able to be with them, putting immediate families under huge pressure. In contrast, NHS England added up to £125 million for the five months from November 2020 to March 2021 to their original funding package, equating to up to £6 million extra in consequential funding to the Welsh Government. Again, the Welsh Government has not indicated that palliative care services in Wales will benefit from this. Further, there was no indication in the Welsh Government's draft budget for 2021-22 of continued support for hospices to maintain their essential services, despite their estimated combined shortfall of £6.1 million during 2021-22.

Before the pandemic, the Welsh Government agreed to review charitable hospice funding, recognising that the current arrangements neither accurately reflect population need for palliative care now, nor the projected increase into the future. As yet, this review has not been forthcoming. All hospice in-patient services providing specialist end-of-life care or crisis care have continued throughout the pandemic, as have hospice and bereavement counselling teams, many of which are also offering specialist mental health and bereavement care to local health and care staff through the pandemic. As the current Welsh Government end-of-life care delivery plan comes to an end, hospices in Wales are calling for a new national plan that both takes a whole-system approach and responds to the shift in home deaths through the pandemic. As the pandemic has demonstrated, every person should have access to expert and dignified end-of-life care no matter where they die. Diolch.

Thank you. I have selected the amendment to the motion, and I call on Rhun ap Iorwerth to move amendment 1, tabled in the name of Siân Gwenllian. Rhun.

Amendment 1—Siân Gwenllian

Insert as new sub-point at end of motion:

(e) address inequalities in access to good end-of-life care.

Amendment 1 moved.

Thank you very much. I'm pleased to participate in this debate. At a personal level, I've truly enjoyed learning more about end-of-life care in the past few years, working very closely with Marie Curie and Hospice UK, but we rarely have time to discuss this in the Senedd, so I'm pleased that we have the opportunity to do it today. It's such an important area, and that's reflected in how many briefings and so on have been sent to me and others by various organisations over the past few days. I'm very grateful for those.

We will be supporting the motion today. Our amendment, very simply, seeks to ensure that we recognise the inequalities that still exist in access to good end-of-life care. The pandemic, of course, has changed how many services are delivered, and that's no different in end-of-life care. We know that some 2,000 more people have died at home during the pandemic than was the case in recent years, and whilst it has always been an aspiration to enable people to die at home if that's their wish, we don't know, of course, if the quality of care that those people have received over the past months has been what it should have been, and I suspect that it perhaps hasn't been, because of the pandemic. The pandemic has also, I think, highlighted the inequalities that we were aware of prior to the pandemic, because the pandemic itself has clearly demonstrated how unequal our society is, in terms of the disproportionate impact on poorer communities and minority communities, for example.

So, how do we respond to that? First of all, we need a new plan that takes a holistic approach, and one that understands the workforce required to deliver services in all parts of Wales. Secondly, we must realise that care homes are providers of palliative care, and we need to ensure the commissioning policies and regulations reflect that. Thirdly, we need to look specifically at issues related to palliative care for children and young people, not only in terms of workforce, with us being short some 240 children's community nurses in this sector, but also by providing better support for families and for brothers and sisters. And in a debate like this, we'll have an opportunity to hear more ideas being put forward

I will finish by just asking a few questions of the Minister. First of all, what steps are the Welsh Government taking in order to fund community nursing services for children in a sustainable manner, either provided through the NHS or hospice at home services for children? What steps are the Government taking to fill that gap in terms of the community nursing workforce who have the skills and experiences necessary to provide palliative care to children? And how is the Welsh Government holding local health boards to account for the way in which they plan and fund nursing services for children who have palliative care needs? Thank you.

Many colleagues in this debate have rightly focused on the impact of COVID-19 on individuals needing end-of-life care and their families who, in normal circumstances, would've been able to comfort and support them during this time. Over the last year, there have been some harrowing stories of patients nearing the end of life in hospital or in a care home, where that natural family love and support has not been possible—an issue touched on by Mark Isherwood earlier in opening.

In Baroness Tessa Jowell's final powerful speech to the House of Lords, she described so eloquently what it means to live with a life-limiting illness, and she made a profound statement about life and death, which resonates in this debate today. She said,

'In the end, what gives a life meaning is not only how it is lived, but how it draws to a close.'

End-of-life care is not just important to how a person dies, but how a person's life is given meaning; how, in part, it is remembered. It not only relates to medical care, but to personal care too. The involvement of family and close friends is at the heart of that. What's been so difficult for those people and their relatives over recent months has been the absence of what would normally be expected when someone is nearing the end of their life and the associated distress for families. And of course, as we've heard, it's not just families who have suffered, it's staff too. That's why our motion includes the impact on our health and care staff who have shown such professionalism and humanity during the course of the pandemic.

High-quality palliative care and bereavement support services are needed for families and staff, recognising some of the trauma of the past 10 months. We need to better understand the impact on our staff and how the experiences of this pandemic have shaped their view of their role and the services they provide, and what the battle against COVID means for recruitment of tomorrow's health and care staff.

We all know that, in ordinary times, our health and care staff work in tough environments, but no-one could've foreseen some of the conditions in hospital wards and care home rooms over recent months, where so many people have lost their lives. In many cases, staff have not just been doing their job and providing palliative care, but they've acted as surrogate families, where family members were not allowed to visit. If we're serious about responding to the consequences of this pandemic, we need to rethink how bereavement services and support are provided. That's why I'm supporting our call for a national bereavement framework and that we recognise that sufficient funding is needed to ensure that COVID-19 does not create another pandemic—that of poor mental health.

In concluding, Dirprwy Lywydd, I'd just like to touch on the specific challenges faced by people living with motor neurone disease across Wales—something that's been highlighted by the MND Association. The MND Association has been campaigning to allow MND patients to access benefits quicker during the pandemic period. At UK level, the Department for Work and Pensions have finished their review, and I'd like to hear from the Minister later about how the Welsh Government can help MND sufferers to access support quicker during the final stages of life.

In conclusion, Dirprwy Lywydd, I ask Members to support this motion. Let's strive to help patients with long-term and terminal illnesses access the care that they and their families need. Let's strive to ensure that our doctors and nurses can access a proper support network to help with their emotional well-being, and let's ensure that people from all parts of Wales can access professional bereavement services.

I welcome the Tory motion, because I think we don't talk enough about death, even though it faces us all eventually. I think one of the worst things about the pandemic is people dying in hospital without their loved ones holding on to them. So, I absolutely salute the heroic efforts of nursing and social care staff, who have enabled people to die with dignity, even if they haven't been able to say goodbye to their loved ones, except through some sort of device.

Most people want to die at home. That is an absolute fact. I think that Sir Tom Moore—one of the things that is so wonderful about him is that he lived life absolutely to the full right to the very end. He even went on a bucket holiday to Barbados just before he died, so good luck to him. But, he had the good fortune to live with at least two generations of his family, and we have to acknowledge, as the amendment does, that not everyone has family who have the room to accommodate the older generation as well as the younger generation.

For people who don't have family at all, care homes can provide a really good alternative social network for people who find it difficult to move around. So, I think that staff in care homes have done an extraordinary job in dealing with the challenges thrown at them during the pandemic. But, as we move out of the pandemic, I would really like to see care homes becoming more integrated into the communities where they are, and becoming more democratic in their way of operating.

The worst thing about a care home, from my perspective, is its potential isolation from the rest of society. I know there are excellent initiatives to enable children to go into care homes and sing songs or talk to older people, and those are all to be applauded. But, there really is a great deal more that we could do that they do in places like Scandinavia and Holland to make care homes part of the community—places where food prepared by the staff with residents is then sold to the general public.

Lastly, I just want to say that I think that the neighbourhood nursing pilots—the evaluation that was done of them is a clear indication of the path that I would like to see us go down to ensure that people can remain in their own home, with the care and support that they need, for as long as possible. That is where people prefer to be in most circumstances. So, I think that there is a great deal more that we can do to make the end of life much more dignified and happy.   

I would like to thank the Welsh Conservatives for tabling this important debate, and of course we support the motion. Death is one of the only inevitabilities of life. Enabling each of us to die well is a hallmark of a compassionate society. Unfortunately, we haven't always provided the best end-of-life care, and this has been exacerbated by the arrival of the SARS-CoV-2 virus.

Last year, we saw that the number of Welsh citizens who lost their lives increase by over 10 per cent to over 37,000. Over 6,000 of those were because of this dreadful disease, which has cut short the lives of loved ones across the nation. Pre-pandemic, one in four of those in need of palliative care were denied the right level of care.

Multiple studies have also highlighted the fact that adequate and timely palliative care is less accessible for older people and those from the black, Asian, minority ethnic community. These inequalities will have increased as a result of COVID-19, which has disproportionately impacted the elderly and other members of our community.

Far too many people have been forced to face the end of their lives unable to be surrounded by family and friends. Far too many have died alone, and even more would have if not for our amazing nursing staff and general NHS staff. But, this has taken its toll. As the motion before us today notes, the RCN have raised concerns regarding nurses being exhausted, stressed, and near burn-out point, due to the pandemic and the additional pressure of providing end-of-life care. This is unsustainable. We have to ensure that we have properly-resourced palliative care and bereavement services, which have been sorely taxed as a result of this pandemic. And it's unfortunate that there has been no additional funding in the forthcoming budget for hospices, for bereavement services nor for mental health support for nurses impacted by this pandemic. And there are many nurses and NHS staff suffering from stress due to this pandemic.

Just before Christmas, my husband was taken into hospital with COVID-19, and he spent five weeks in there. He saw many people not coming out. He saw families in distress. He heard nurses really being stressed due to this. So, we must do better for our NHS staff, we must do better so our citizens can die well, and so that those that help ease the burden are not left traumatised by the experience. Please support this motion. Diolch yn fawr iawn.

Darren Millar. You need to unmute yourself or have—

Okay. Thank you.

We're not hearing you. There you go.

Can you hear me now? Thank you, Deputy Presiding Officer. This afternoon's debate, I think, is of crucial importance. As we've already heard, the impact of the pandemic on health professionals, the individuals they care for, and for those who've lost their loved ones—whether from COVID-19 or from other causes—has been absolutely huge. And, understandably, the risk of spreading the virus has resulted in huge changes to the way in which care and support is being provided and, of course, on the ability of those who are poorly and at the end of life to have the personal contact that they crave with their loved ones.

The importance of personal, physical contact with our loved ones can not be overstated. Many people who are fit and healthy across Wales are craving the ability to embrace a loved one or to hold their hand at the moment, and they're just people who are fit and healthy and at home. But just imagine the pain of separation for those who've not been able to do these things and are at the end of their lives. For them, the prospect of knowing that the last sight of their loved one might be on a hand-held device like a mobile phone or an iPad is frankly heartbreaking. And not just heartbreaking for them, but also for their loved ones—those mums, dads, sons, daughters, brothers, sisters and close friends who face the trauma of not being able to be physically present to say their final goodbyes and to bring the comfort that they want to as life slips away. On top of this, we've had the restrictions on funerals—they've also taken their toll, with fewer people able to be present to offer a kind word or a personal reflection when somebody has passed on. And for many, these restrictions, I think, have magnified greatly the sense of loss and grief that people have experienced.

Now, we know that staff in our hospitals, care homes and hospices have worked incredibly hard, and they've shown great compassion to those in their care and to their families, but in spite of these efforts, it simply has not been possible to overcome the huge impact of the very strict rules that are in place. And these experiences, on top of the other pressures that key workers have faced as the soldiers, if you like, of the front line in the battle against the coronavirus, have really taken their toll on their mental health and well-being, as other speakers have referenced. So, it's no wonder then that there have been reports of health professionals suffering from things that are akin to post-traumatic stress disorder.

And it's for all of these reasons that access to high-quality pastoral care, chaplaincy, counselling and bereavement support is absolutely critical. The work of the cross-party group on faith, the cross-party group on funerals and bereavement, and the cross-party group on hospices and palliative care has shone a spotlight on many of these services during the pandemic, and reminded us all just of how valuable they are to those who engage with them. And while I'm pleased that there's been some additional investment in these services during the pandemic, I think it's absolutely clear to everybody that more funding is required and that we need to increase the capacity of these services to cope with the increasing demands that are being placed upon them. We know there is going to be a need for this support in the future. It's going to be prolonged for many people—much more prolonged than would otherwise be the case. So, this support needs to be significant and recurring in the years ahead. So, I very much hope that the Welsh Government will take this into account as a result of today's debate, and I encourage everybody to support the motion that has been tabled by the Welsh Conservatives today.

Thank you. Can I call on the Minister for Health and Social Services Vaughan Gething?

Thank you, Deputy Presiding Officer. I want to thank the Welsh Conservatives for bringing this important issue to the Chamber today and to all Members who have contributed. I've listened carefully to what speakers had to say. I won't be able to answer all the questions, but I'll come to those at the end. And I should say at the outset that, overall, I'm supportive of the motion and the amendment.

The pandemic has highlighted more than ever that good palliative care can make a huge difference to the quality of life for people who have reached the end of their lives, helping them to live as well as possible, and, when the time comes, to die with dignity. It can also make a significant difference to those left behind and how they cope with the grief of losing a loved one. It has also emphasised the emotional impact that working in the end-of-life care sector and/or caring for someone at the end of their life can have.

We continue to invest over £8.4 million annually to support specialist palliative care services across Wales. Much of this funding goes to support hospices, which are central to our approach for end-of-life care. The support that they provide to patients, families and carers cannot be underestimated. We're committed to working with the end-of-life care board and health boards over the coming months to review the funding allocated to adult and children's hospices, and it is important to recognise the bespoke role of children's hospices within this review. In the meantime, the Welsh Government has already allocated £6.3 million of emergency funding to support hospices throughout the pandemic. I'm pleased to announce that we will be making an additional £3 million available to support hospices to the end of this financial year, bringing the total additional investment to hospices during the pandemic to £9.3 million.

I recognise the impact that the death of a loved one can have on individuals, families and communities, particularly in light of the constraints placed upon us by COVID-19. Grief is a natural part of our response to death. However, without the ability to visit loved ones at the end of life or to undertake our usual rituals and practices, that grief experience can become even more complex. With this in mind, we've issued guidance to ensure that patients at the end of life, whether in hospital, hospice or a care home, are allowed a visit from their loved ones, not just in the last moments, but, indeed, in the last days of their life. Balancing people's rights and supporting their well-being with a desire to protect people from the risk of infection remains very challenging. Collectively, we have to rise to that challenge and do all that we can to support people to see their loved ones as safely as possible.

Work to develop a national bereavement framework is progressing well. The framework will set out core principles, minimal standards and a range of actions to support regional and local planning. Consultation will continue this spring and is supported by £1 million of additional funding from April 2021. We've also provided £900,000 of additional support to hospices and bereavement providers throughout the pandemic to specifically enhance their bereavement care and support.

I also want to recognise the vital role that district nurses undertake in delivering palliative and end-of-life care at home and in care homes, and to applaud them for maintaining home-visiting services throughout the pandemic. However, as with other Members, we must recognise that they and all of our health and social care professionals and third sector partners need our support too. We've provided additional funding to enhance the Health for Health Professionals Wales service, which is confidential and free, a tiered model of mental health support that is available to everyone working, studying and volunteering for NHS Wales. There is also a range of resources available to support all those working in the health and social care field on the Health Education and Improvement Wales website.

In finishing, Deputy Presiding Officer, I want to recommit the Welsh Government to ensuring that everyone has access to high-quality end-of-life care and bereavement support, as and when they need it. I will be issuing a written statement in the coming weeks to respond to the many points made by Members in today's debate, and to provide an update on our wider end-of-life care progress. Thank you, Deputy Presiding Officer.

Thank you. Can I ask Suzy Davies now to reply to the debate? Suzy.

Diolch, Dirprwy Lywydd, and thank you to everyone who's taken part in this debate. As Mark Isherwood said at the beginning, it's never been so important as now to be discussing what we're discussing today.

A number of Members have referred to the hope that we will all die well, and the role of palliative services in that is absolutely critical. I think what I picked up from the debate today is that perhaps there needs to be better integration between the hospices that we're all familiar with and we understand their role, but with perhaps those district nurses, with the hospitals, as Jenny mentioned, but also the care homes, which Jenny mentioned—all these are part of the story of delivering good palliative care. And particularly with care homes, where we've seen 21 per cent of people dying, as compared to 16 per cent in previous years, there's an indication there of the strength of the role that care homes play in helping people die well. And I think that this matters more than ever before, because, as others have mentioned, we've been in very, very difficult circumstances; there's been no personal contact with those who are nearing the end of their lives. And, on top of the experiences we all have, there's this overlay of guilt that people aren't able to spend time with their loved ones as they reach the end of their lives, and an overlay of guilt that perhaps they weren't able to have them at home for those last few months of their life. And because of that, if we're talking about a new care delivery plan or a new framework, Minister—and I'm grateful to you for your comments today—then we need to be more conscious of these complex responses to grief and make sure that we're involving our nurses, our doctors, our care home workers and, of course, our bereavement services, who haven't really had much of a shout out today. 

And then finally from me—Minister, I thank you very much for the announcement you've made today about the extra money for these services before the end of the financial year. I think, actually, there was a little bit more coming in terms of consequentials from the UK Government for this period, but you mentioned other services that are involved in supporting mental health during this period, and maybe some of the money has gone towards that. I share Caroline Jones's point, really, that there's no mention particularly for grief and bereavement services in the budget, so your comments today have helped me with that. 

I suppose I'd like to finish, Dirprwy Lywydd, just by saying that this is one subject area where, really, we shouldn't have to scrutinise it particularly thoroughly with funding and delivery. This is an area where we should always assume and we should always be assured that we are getting it right. And so if I can just finish by thanking the members of those two CPGs, those two cross-party groups, who've really helped inform the debate today and made us all just think that little bit more closely about what's important to us. Thank you.

Thank you. The proposal is to agree the motion without amendment. Does any Member object? I don't see any objections, therefore the motion is—. Oh, sorry. Rhun, is your hand up, because it's just slightly off the camera? Yes, okay. I do see an objection. Yes, I do see an objection, therefore we will defer voting under this item until voting time.

Voting deferred until voting time.