The following amendments have been selected: amendment1 in the name of Rebecca Evans, and amendments 2 and 3 in the name of Rhun ap Iorwerth. If amendment 1 is agreed amendments 2 and 3 will be deselected.

Item 7 is the Welsh Conservatives' debate on hospice and palliative care, and I call on Mark Isherwood to move the motion. Mark.

Motion NDM7193 Darren Millar

To propose that the National Assembly for Wales:

1. Notes the Cross Party Group on Hospices and Palliative Care’s report on Inequalities in Access to Hospice and Palliative Care.

2. Acknowledges that approximately 23,000 people in Wales have a palliative care need at any one time, including over 1,000 children.

3. Recognises that whilst some progress has been made in widening access to hospice and palliative care in Wales, there remains significant unmet need and under-met need, and calls on the Welsh Government to address this. 

4. Calls on the Welsh Government to:

a) outline how Wales will become a 'compassionate country';

b) ensure that strengthening the provision of palliative care services in Wales is made central to this approach;

c) provide consistent reporting criteria, and address gaps in data collection on adult and paediatric palliative care needs;

d) update the funding mechanism for charitable hospices so that it is based on current local population need and prevalence data;

e) increase the level of statutory funding provided to adult and children’s hospices in Wales.  

Motion moved.

Diolch. Our motion today notes the cross-party group on hospices and palliative care’s report on inequalities in access to hospice and palliative care and is based entirely on this evidence-based report and further detailed evidence received since from organisations and professionals working in the sector. It is therefore deeply regrettable that the Welsh Government is proposing an amendment that deletes almost all of this and I therefore urge them to withdraw their amendment, listen and act.

Approximately 23,000 people in Wales have a palliative care need at any one time, including over 1,000 children. But around one in four, around 6,000 people, don't get access to the end-of-life care they need.

Hospices work in partnership with, and supplement, existing NHS services within local areas. Last year in Wales, 16 charitable hospices provided direct care to over 11,000 people and their families, whilst reaching thousands more through their community engagement and development; 290,000 hours were donated by hospice volunteers; 2,150 adults were seen in day hospice and out-patient care; there were 22,500 overnight stays in in-patient care; 3,500 people volunteered for their local hospices; 8,600 adults were seen by community care and hospice at home; 800 children were helped directly by charitable hospice care; there were 57,700 home visits by community care and hospice at home; and 2,300 families received bereavement care through hospices.

As the cross-party group report found, despite some progress in widening access to hospice and palliative care in Wales, there remains significant unmet need and under-met need. A significant proportion of bereavement support is provided by our charitable hospices in Wales. However, families whose loved one dies in the acute setting after receiving intensive and critical care often miss out on the bereavement care they need through lack of signposting or availability.

The Welsh Government is working with Cardiff University, Marie Curie and the end-of-life care board to review bereavement services. Cruse Cymru hopes that the final report will include a robust and detailed commitment to a strategic commissioning approach to bereavement services across Wales. In welcoming the review, Marie Curie tells me that ensuring adequate support for families experiencing bereavement is an important part of the process of death and dying and is a priority for many in the end-of-life sector. 

The charity 2 Wish Upon a Star also welcomes this review and emphasises the correlation between those organisations funded by the Welsh Government, local authorities or health boards, who predominantly signpost or refer into organisations, and those who provide bereavement services but receive little or no funding. The cross-party group report calls for bereavement to be made a key feature of all relevant policies.

In July 2018, the Minister announced his ambition for Wales to become the first compassionate country—a country where we ensure that the well-being needs of an entire community are a priority. Our motion calls on the Welsh Government to outline how it will achieve this. Marie Curie identifies many examples of best practice in cities, towns and states, utilising the compassionate community model to ensure a better end-of-life experience, ranging from Good Life, Good Death, Good Grief and the Scottish Partnership for Palliative Care toolkit, encouraging local communities to create support networks, to projects in India and Australia.

Hospices and the voluntary sector are well positioned to mobilise volunteers and support communities to help deliver compassionate communities, with many already delivering programmes that focus on widening participation within end-of-life care. Marie Curie runs a helper scheme, in which specially trained volunteers help to provide regular support to those receiving palliative care and their families. Wrexham-based Nightingale House established compassionate communities groups, and, although they cannot manage the liability further down the line, they state that hospices can contribute if their role is focused on people with palliative care needs and that compassionate communities could, therefore, develop with them on this basis. They're, for example, taking their day services out to Chirk in Denbighshire and Mold in Flintshire. 

Hospices also provide additional services to those provided by the NHS, such as support for carers and complementary therapies. However, despite their importance within wider care service provision, hospices are experiencing a number of challenges, which impact on their ability to provide sufficient support services. These include, they state, a lack of statutory Welsh Government funding, resulting in financial pressures that are restricting the ability of hospices to provide services; an out-of-date funding formula leading to a postcode lottery of services; and unmet need caused by a lack of specialist palliative care staff.

Wales's hospices had a combined revenue of £36 million in 2018 and fundraised around £28 million of this. Statutory funding has flatlined for many years. Children's hospices tell me that, although they operate on a 'buy one, get seven or eight free' basis, they've had flatline statutory funding for 10 years.

Government funding of children's hospices in Wales, as a percentage of its charitable expenditure, is lower than in England and in Scotland. In Wales, children's hospices received 12 per cent of their expenditure from Government funding last year, compared to 21 per cent in England and 53 per cent in Scotland. The UK Government is doubling children's hospice funding to £25 million annually by 2023-24, and the Scottish Government is providing £30 million over five years to support children's hospices there. Wales's children's hospices are calling for action on the recommendations made by the cross-party group report and asking the Welsh Government to fund the study that examines the demands for children's palliative care in Wales and the extent to which that is being met.

Adult hospices tell me that their statutory funding has not changed for a decade and has therefore been dropping in real terms each year. Government funding for adult hospices, as a percentage of expenditure, is lower in Wales than in any other UK nation. In Wales, adult hospices received 28 per cent of Government funding, as a percentage of their expenditure in 2017, compared with 33 per cent in England, 34 per cent in Northern Ireland, and 38 per cent in Scotland.

Now, while most people express a preference to be cared for in their usual place of residence—at home or in their care home—55 per cent of deaths in Wales occur in hospitals. However, many of these may receive some support from a hospice. Given the current pressures in Wales on the number of available hospital beds, hospices provide an opportunity to allow people to access the support they need outside of a hospital environment and according to their own preference. Local health boards should therefore develop close working relationships with hospice providers to allow people to access a holistic package of care, designing services together and commissioning smarter to improve lives and reduce pressure on budgets.

The cross-party group report said that those with dementia, heart failure, and neurological conditions in particular, face a range of barriers to appropriate care and are less likely to be referred than cancer sufferers, when they should be entitled to care at home, in hospices and care homes as well as hospitals. The report said people aged over 85 who live in a care home can struggle to get the right support, something the former Older People's Commissioner for Wales has previously highlighted. The traditional view of a hospice as an in-patient unit where someone might go for the last few weeks of life is too narrow when over 80 per cent of hospice services in Wales are actually delivered out in the community or in people's homes.

The committee report made 11 recommendations for improvement, including that Welsh Government should develop a robust action plan to tackle the gaps in palliative care staffing, prioritising district nurses and community paediatric nurses. Health boards need to ensure there is comprehensive out-of-hours coverage across the whole of Wales. Hospices and palliative care providers should educate colleagues in health and social care about the range of services available—they want to. And the funding formula should be based on current population need, which will require clarification on which measurements will be used in determining need, noting that the end-of-life care board no longer holds the levers and funding has been fully devolved to health boards and that the national clinical lead for palliative and end-of-life care told the cross-party group that, although the board is strongly committed to finding ways to measure outcomes, experience, and the differences made, he was becoming slightly concerned about people saying that it was hard to measure outcomes when they were not trying.

Wales has a rapidly ageing population, with the number of people aged 65 and over projected to increase by 36.6 per cent between 2016 and 2041. Of the 34,000 people who die every year in Wales, 75 per cent need some form of palliative and end-of-life care. As a hospice leader told me this week, 'Needs are growing and growing but no more money is coming in, so at what stage do we start to reduce provision?' They emphasised that hospices' independence is their strength and the reason their communities support them, but added that health boards are getting huge and unequal returns from hospices and therefore have no interest in changing the funding mechanism. It is therefore down to the Welsh Government to make this happen.

Effective collaboration between the NHS and charitable sector is essential if we're to radically improve access to hospice and palliative care for everyone across Wales—I've been saying this here for 15 years—with health boards asking hospices how they can help them deliver more. Let's listen, let's make our hospices deliver everything they possibly can, let's improve lives and let's use that NHS budget a damn sight smarter than we currently are.

Thank you. I have selected the three amendments to the motion. If amendment 1 is agreed, amendments 2 and 3 will be deselected. So, can I ask the Minister for Health and Social Services to move formally amendment 1, tabled in the name of Rebecca Evans?

Amendment 1—Rebecca Evans

Delete all after point 2 and replace with:

Recognises that progress has been made in widening access to hospice and palliative care in Wales and that further work is needed to establish any unmet need

Notes that the Welsh Government will:

a) continue to work with statutory and third sector partners to deliver on the ambition of making Wales the world’s first 'compassionate country';

b) ensure that strengthening the provision of palliative care services in Wales is made central to this approach;

c) provide consistent reporting criteria, and address gaps in data collection on adult and paediatric palliative care needs;

d) continue to monitor the mechanism of funding for charitable hospices working with the end of life board and health boards;

e)  continue to monitor and review funding provided to adult and children’s hospices in Wales.

Amendment 1 moved.

Formally.

Thank you. Can I now call on Helen Mary Jones to move amendments 2 and 3, tabled in the name of Rhun ap Iorwerth? Helen.

Amendment 2—Rhun ap Iorwerth

Add as new sub-point at end of point 4:

ensure carers receive the support they need both during and after they have cared for somebody receiving palliative care.

Amendment 3—Rhun ap Iorwerth

Add as new sub-point at end of point 4:

ensure that provision of a variety of services is available in all parts of Wales so that the choices of the individual over the type and location of palliative care they receive can be respected.

Amendments 2 and 3 moved.

Diolch yn fawr, Dirprwy Lywydd. I'd like to begin by thanking the Conservative group for bringing forward this debate on this very important issue, and to say a personal thank you to Mark Isherwood for his excellent work on this very, very important topic, which, as he says, has been a consistent feature of his contribution to the Assembly ever since he was elected. And I know that colleagues in the third sector and the hospice movement are very grateful to Mark Isherwood for everything that he does, and I'm sure, actually, that that gratitude is shared across this Chamber, regardless of party.

I'd like to speak, if I may, Deputy Presiding Officer, briefly to our two amendments and then make one further general comment. Our second amendment, amendment 2, calls attention to the importance of carers and support for carers in this regard. Of course, Members of the Assembly will be aware that the Health and Social Services Committee has been doing a big piece of work looking at support for carers overall. The impact, of course, of caring for someone in this situation is huge, and, for many people, the emotional impact is very serious. The issues around caring for a younger person towards the end of their life—you may then also, perhaps, as a grandparent, be caring for the children of that younger person. The pattern, of course—we very often see that the younger person, let's say with cancer, may rally, may be well for some months, may be very unwell again; the pattern isn't consistent. And so carers supporting people in palliative care situations have particular needs and they also need that support after bereavement. There is that loss of role, as well, if you've been caring for somebody for some time and suddenly they're no longer with you. You have the grief at their loss and then a question about how you go forward with your own life, and I'm sure that many of us have seen this in our own families. Of course, the hospice movement does some very good work around that grief support, but we shouldn't rely on them alone. So, I'd recommend our second amendment to what is, overall, a very strong motion to the Assembly.

Our amendment 3 speaks about the need to provide a variety of services, and I think Mark Isherwood has acknowledged in his speech that people want different things towards the end of their lives. It is the one thing that is certain that will come to us all, but where we feel most comfortable to spend our last hours and days may be very different from one person to another. Many people choose support at home, and I put on record again my gratitude to the Marie Curie nurses who helped us to take care of my mother at home. Other people don't want that; they don't want to put what they see as a pressure on their family members and their carers. So, we must ensure that there is a variety of services. And, as a representative for Mid and West Wales, I'm particularly anxious that we make sure that those are available across rural communities as well, and there are some excellent hospice-at-home services, the Paul Sartori foundation, for example—

Would you take an intervention? You're most kind for taking the intervention, Helen Mary. I just wanted to draw to your attention, and I'm sure you will agree with me that, in fact, one of the big barriers is the postcode lottery that we see throughout our health boards, with many not prioritising this, so that—. People do want to die and have that support where they want be, and that 24 hours, seven days a week, 365 days a year, if people want to be at home, then they should be able to be at home, but they just, through the postcode lottery of local health boards, don't have that opportunity.

I agree with everything that Angela Burns has said. I think it isn't acceptable that people in some communities can have access to a service and people in other communities cannot. I don't think any of us would want a one-size-fits-all across the whole of Wales, because our communities and individuals need different things, but we do need to offer that variety of services.

I'd like to move on briefly to comment on point 4(d) in the original motion, which I support, about the need for a range of funding models, and to draw the Assembly's attention to the model used by the Tŷ Bryngwyn Hospice in Llanelli in my own region. I've been privileged to support the work of that hospice for many years. In fact, one of my first duties as an Assembly Member was to attend its opening and then to give the local health board a certain amount of pressure to make sure that they funded it properly. Now, in that model, the basic care, the nursing care, the medical care is provided and funded by the local health board. The hospice was built and has been refurbished and all the extra things that come with hospice care are provided by the charitable organisation, which has huge local support.

It's an innovative model, and I think it may be one that could be developed across Wales, and perhaps I'll ask the Minister to agree to take a look at that, and to commend that to other local health boards. It wouldn't work for all charitable hospices, because some of them would feel that that involved too much of a loss of their own autonomy and of the way that they want to provide services, but it is one way that I've seen, where the basic care that would otherwise be provided in a hospital, perhaps, is provided at a much better setting, but where the charitable model is then free to provide the extras, if you like, and not the basics.

Very briefly, just to end my contribution, if I may, Deputy Presiding Officer, to say we can't support the Government amendment. There has been some progress, but there is too much about reviewing and monitoring in it, and not enough action. The cross-party group has done an excellent piece of work. We have the evidence as to what needs to be done, and we need to get on with it. I'm sure that we can all agree with the aspiration for Wales to become the first compassionate country in this regard, but the question is how we fulfil that aspiration, and, to this end, I recommend to this Chamber our amendments 2 and 3 and the original motion. Thank you.

I'm proud to contribute to this debate, just knowing how invaluable our hospice movement is, and I would like to endorse Helen Mary's comments about the fabulous work that Mark Isherwood has done on behalf of the hospice movement. Long before I became an AM, I knew of Mark because of the work he did, so thank you, Mark.

The Dying Matters coalition has concluded that

'It is in communities that the taboo of talking about dying and death needs to be tackled. To be effective we need to work together with everyone who has an interest in raising awareness on end of life issues.'

This is no more true than for hospice and palliative care. Mark was quite right to point out that 23,000 people in Wales have a palliative care need at any one time, and it is terrible that around 6,000 people with life-limiting conditions could be missing out on care provision and that one in four people die without the support and care they deserve.

Following the publication of the 'Inequalities in access to hospice and palliative care' report, your Welsh Government stated, Minister, that in 2018 the recommendations would provide additional focus. However, there remain several unmet aims. Recommendation 7 called on the end-of-life care implementation board to

'develop a robust action plan to address shortages in community nursing'.

We are a long way off achieving this. Hospice providers have warned of shortages in community paediatric nurses and that this has prevented some children receiving long-term care in their home. District nurses have seen a service approach move from calling in to task based, meaning that there is a need for more staff to meet these holistic needs. Even the Health, Social Care and Sport Committee have asked for an update on progress on the development of an action plan.

I must acknowledge that there are some excellent schemes under way, such as the pioneering out-of-hours end-of-life nursing service in north Wales, but there does remain a need to strengthen staffing requirements.

Finance is a major point of frustration too. For example, we—and I say 'we', I say that on behalf of every constituency, but me also as an Assembly Member—we are blessed that Llandudno is the home of St David's Hospice, an outstanding adult palliative care facility serving all of north-west Wales. However, less than 14 per cent of the funding it requires is provided by the Welsh Government and local health board.

Also with a special place in our hearts, in my constituency, is Tŷ Gobaith. Only one month of the hospice's income comes from statutory sources. This simply isn't good enough, and during Hospice Care Week, I called for more statutory support to be provided to Tŷ Gobaith. The charity loses out also as a consequence of the Welsh problem of poor statutory financial support. Welsh Government and local health boards contributed only 12 per cent of the amount children's hospices spend to care for seriously ill children in Wales. In England, the figure is 21 per cent; Scotland, 47 per cent. Welsh hospices deserve more.

Equally bad is equity of distribution, with one children's hospice receiving 8.1 per cent of its expenditure whilst another has 18.2 per cent. A contributory factor is that the funding formula has not been reviewed for a decade. Clearly, recommendation 11 of the report needs to be acted on so that we can be sure that allocations are based on up-to-date population need. Indeed, we have a rapidly changing and ageing population. The number of people aged 65 and over could rise by almost 40 per cent by 2041. Financial allocations need to respect and reflect that, but the solution is not just more money.

We have an opportunity to create a compassionate country. This is about central and local government encouraging, supporting and facilitating the actions of others. Sadly, the Welsh Government has not set a clear vision or milestones, but I am heartened by the fact that hospices are well placed to respond to a national plan. I will be fully supporting this debate today as I am confident that if the issues raised are positively acted on, the provision of palliative care services in Wales would be strengthened. Our people in Wales deserve nothing less.

I'm very pleased to take part in this important debate today, recognising how important end-of-life and palliative care is to so many of our population and their families. It has been for quite some time and it will be, obviously, into the future. As with other Members, I'm very familiar with the work of local hospices and the quality and importance of that work, in my case, largely St David's Hospice, which has been providing that end-of-life and palliative care for some 40 years now, working with the national health service.

I've come across that work, for example, in the Light Up a Life services, which I'm sure other Members have attended around Christmas time, when families at services remember their loved ones who benefitted from the care provided by the hospice, and at those services it's very evident how important it is to the families, how emotional they obviously are about the care that was received and the value of it, and the commitment that they feel to the work of the hospice, not just for the care that their family has experienced, but for people in general. And of course they carry out so much private fundraising work as hospices. I'm sure all of us are very familiar with that. Indeed, I run the Newport half marathon every year, which is a fundraiser for the St David's Hospice, and they do an amazing variety of fundraising work. That really is the fund; their services would sit outside mainstream NHS provision.

But of course, a lot of the unmet need that exists is about provision within the mainstream, and that's where I think we do come to the thorny questions of the level of Welsh Government funding, the adequacy of it, and how it might be developed for the future. I do believe that we need to be constructive and look at the models that exist and how we can recognise the ageing population, the unmet need that exists, and make sure that our hospices are fully equipped to play the role that they play better than anyone else in providing this crucial care and service.

One part of that equation is 'Agenda for Change', because I know that hospices are concerned that they haven't had the pay rise, the 2018-19 pay rise that carries on for three years, passported to them from health boards, and obviously that creates real issues for them. There does seem to be a little lack of clarity. I think the health boards' stance, in part at least, is that they make a general contribution to the services within the mainstream provided by hospices, and that then would cover the 'Agenda for Change' pay increase. That's not a view that is shared by hospices, and I wonder whether the Minister might today provide clarity in terms of his understanding of these issues, which, as I say, are very important to hospices right across Wales.

Dirprwy Lywydd, I think there's no shortage of understanding of the value of the work that the hospices carry out. As we've heard already, so many people would prefer to end their lives at home with families, with friends in familiar surroundings, and very many families want their loved ones to end their lives in that way. Hospices provide the vital support, advice and service that enables that to happen, as well as the in-hospice care. So, I think all of us fully realise the value of this care and indeed the challenges coming from the ageing population and unmet need. So, we have to continue, I believe, working together—the NHS, hospices, Welsh Government and other key partners—if we're going to not just continue the care that is so important and valuable, but further develop it for these future challenges.

For many people, 'hospice' is a frightening word because it is associated with the end of life, but hospices are a way for people to prioritise the wishes of the patient and the family. They offer specialised care and support that works to create ease and comfort and maintain the patient's quality of life. The key to providing comfort in the final days is a comprehensive plan that involves a team of medical and healthcare professionals who address all aspects of a patient's illness, to control and reduce pain and discomfort. Hospice care eases family anxiety, provides counselling and allows patients a chance to die with dignity and respect. Some 23,000 people in Wales have palliative care, and at any one time it includes 1,000 children.

However, despite the importance of providing this vital care service, hospices currently face a number of challenges that impact on their ability to provide sufficient support. A recent inquiry held by the cross-party group on hospices and palliative care found that the hospices are suffering from a lack of financial support from Welsh Government and local health boards. A lack of specialist palliative care staff and community nurses has caused delays in individuals accessing care, worsening unmet need and creating gaps within the services.

Hospices provide a range of service to patients, their families and carers, yet not all of these services are considered to be core NHS provision. The statutory contribution to the funding of charitable hospices does not contribute to the full range of care provided by hospices nor their management and overheads. As a result, hospices often rely on charitable donations to provide services. In 2018, hospices in Wales fundraised over £28 million. Figures from Hospice UK show that Wales has the lowest level of Government funding for adult hospices in the United Kingdom. Adult hospices in Wales receive some 28 per cent of their funding from Government, compared to 33 per cent in England, 34 per cent in Northern Ireland, and 35 per cent in Scotland.

The delivery of palliative care services also varies significantly across Wales, leading to a postcode lottery of services as was mentioned earlier. The Welsh Government's own study stated that those receiving palliative services should have access to high-quality care wherever they live. The cross-party group found that regional variation and inconsistencies exist that could be addressed at a national level. An ad hoc approach to service development contributes to inconsistencies in service provision. Difficulties in collecting and co-ordinating data on palliative care use means that service providers may be unable to adequately plan to meet demand and needs in local areas.

To add to the staffing pressures, specifically the shortages of GPs, district nurses and community paediatric nurses, who co-ordinate and deliver the day-to-day care of people with palliative care needs, it was reported recently that a lack of palliative care consultant cover has restricted bed occupancy at an in-patient unit run by St David's Hospice Care in Newport. Bed occupancy fell from 74 per cent to 53 per cent in 2018. Deputy Presiding Officer, Wales is falling behind other developed nations in providing fair and adequate funding for our hospices. We must recognise the true value of the services hospices provide to the people requiring end-of-life care and their families.

I have personal experience. My father-in-law was diagnosed only a couple of years ago, and 12 months earlier his GP told us that his life may not last for another 12 months. That is shocking news when families are told of these sorts of—whether it's cancer, motor neuron disease, or dementia. These are areas when alarm bells start, and doctors nearly know when the life is going to end. That is the time when our GPs must be giving full support to the family to make sure that they are having the dignity and respect in the family and the care and the desire for their end of life to be with peace, harmony and love among family members, rather than dying alone somewhere. Thank you very much.

The Llywydd took the Chair.

I thank the Welsh Conservatives for tabling this important debate, and I'm pleased to take part. We can't put an end to death and dying, but one of the most important things the state can do is ensure our citizens can die with dignity, without pain and with respect. Unfortunately, end-of-life care in Wales is lacking. Around 33,000 people die in Wales each year, yet one in four of those who could benefit from palliative care are missing out.

As highlighted by the cross-party group on hospices and palliative care in their report, a number of factors contribute to unequal access to palliative care, including geography, care setting, diagnosis, age and ethnic background. Poor awareness of hospices and palliative care contributes to either delays in care or the complete absence of suitable end-of-life care. And this is not good enough. How can we as a nation deny our citizens a good death? We have a duty to the people of Wales to ensure equal access to end-of-life care for everyone.

We have to implement Marie Curie's vision of compassionate Cymru. To be a truly compassionate nation, we must not only up our game on end-of-life care, but we must also tackle loneliness and isolation and support those suffering from grief and bereavement. While the Welsh Government can and must do more, so can we all as a society. We have to end the taboos that surround death. Death and dying should not be talked about in hushed whispers. We have to be open about this natural part of life, and whilst we should all do all that we can to delay the inevitable, we must prepare for the eventuality of passing away.

In Scotland, the Good Life, Good Death, Good Grief campaign have developed support packages aimed at creating a Scotland where everyone knows how to help when someone is dying or grieving. They have toolkits aimed at creating support networks in local communities and creating bereavement-friendly places. That is something we can and should replicate in Wales. Let's work towards creating a Wales where people help each other through the difficult times that come with death, dying and loss. Let's encourage Wales's employers to actively support people with terminal illnesses or those suffering with bereavement.

We have so many hurdles to jump before Wales can truly be classed as a compassionate country. And if we are to make compassionate Cymru a reality rather than a pipe dream, then we have to start by adopting the recommendations outlined in 'Inequalities' in access to hospice and palliative care. We must ensure that everyone has access to high-quality end-of-life care first and foremost, and then ensure we have structures in place to help each other during times of loss and grief, both in the workplace and in the community. And I urge colleagues to support this motion before us today. Diolch yn fawr.

I'm delighted to speak in support of this motion today and endorse what colleagues have said in praising the role of hospices and the services that they provide to those experiencing a life-limiting condition and their families. In my own constituency, I'd like to pay tribute to the League of Friends of Llanidloes Hospital. Their palliative care suite was officially opened last year, and I was delighted to attend the launch.

The suite was fully funded by the Llanidloes League of Friends and by the local community, through its own fundraising, as well. The palliative care suite has been absolutely invaluable to the community of Llanidloes and the surrounding areas, allowing people to access care and support outside a hospital setting. And it's designed in such a way that it's just so appropriate for families and younger children as well to visit family members that are using that facility. While I'm sure that we all recognise the important role that hospices and palliative care centres have within the wider care services provision, no funding—no funding—was provided by either the health board or the Welsh Government to support the establishment of Llanidloes palliative care suite. And this situation is replicated across the country.

And I agree with my colleague Mark Isherwood with regard to the lack of statutory funding from the Welsh Government, which results in financial pressures that restrict the ability of hospices to provide services due to the lack of specialist palliative care staff. So, it's now time, I do think, that the funding formula, which is 10 years old, is reviewed to reflect the recent changes in population need and to end the postcode lottery that exists, and the overreliance on the voluntary and charitable sectors. And I put this question to the Minister: is it right that, as I've outlined, it's up to communities and the League of Friends to raise funds themselves for a palliative care facility? Without that facility, people in that area would have to travel miles—miles—in order to visit family and loved ones. So, I do think we need to see some more leadership from health boards as well as the Welsh Government to deliver a more proactive approach to help hospices and palliative care suites meet future funding and operational challenges.

In conclusion, Presiding Officer, hospices and palliative care centres in Wales certainly need more statutory support to allow them to continue to provide the level of service and support they currently deliver to those coming towards the end of their lives, so we don't fall behind other devolved nations in providing fair and adequate funding for hospices.

I call on the Minister for Health and Social Services, Vaughan Gething. 

Thank you, Llywydd. I do want to thank the Conservatives for bringing this important issue to the Chamber today, and all Members who have contributed. I have listened to what speakers have had to say, and I recognise a number of the points that have been made. And, overall, we're broadly supportive of the motion. The Government amendment has been tabled to draw together the commitments we have made, the progress under way, and to indicate our approach for the future. I recognise that not every Member will agree with it, but I recognise that people are broadly pointing in the same direction.

I recognise that 33,000 people die in Wales each year and, at any one time, 23,000 people, including 1,000 children and young people, will require palliative care. We know that good palliative care can make a huge difference to the quality of life of people facing life-limiting illness, helping them to live as well as possible and to die with dignity, and for family and loved ones, good palliative care provides a significant amount of support and makes a great deal of difference to their futures, too.

The Welsh Government remains committed to ensuring that anyone requiring palliative care in Wales should have access to the best possible care. So, our palliative care and end-of-life care delivery plan sets out how we are and how we will improve our services, and that plan is, of course, overseen by an end-of-life care board.

We invest over £8.4 million annually to support specialist palliative care services and to take forward the actions in the delivery plan. We are making real progress. We have resources and facilities in place to support advance care planning to ensure that adults and children are central to the design of their care; we have a single all-Wales 'Do not attempt cardiopulmonary resuscitation' form to ensure that people's wishes are respected; and we have a serious illness conversation training programme to ensure that our staff are equipped to handle what can be very difficult conversations with clarity and compassion.

Much of this good work was highlighted in the cross-party group on hospices and palliative care report, which the Welsh Government has broadly welcomed. The recommendations of that report have helped to provide an additional focus as we continue to strive for excellence in this area of care.

Many of those recommendations have either been or are being addressed. There are some that remain outstanding and are being considered as part of the wider stock-take exercise that the end-of-life care board is undertaking. That includes the gaps in data collection for adult and paediatric care needs.

I recognise some of the comments made about comparisons between UK nations' funding, and they're difficult to make—it's not quite a straight-line formula because of the way that the different parts of our NHS in each nation work with hospices in each country. My ambition, and my approach, is to understand the level of need in Wales and then to set out how we will address it, because hospices are central to our approach to end-of-life care and the support they provide to patients, families and carers, and I do not underestimate that.

Once the stock take is complete, we will work with the end-of-life care board and health boards to review the formula mechanism used to allocate funding to adult and children's hospices in Wales. From the specific point that was mentioned about 'Agenda for Change', I can confirm I wrote to hospices in February this year confirming that local health boards will fund any additional cost pressures created by the new contract to charitable hospices in Wales that employ staff on an 'Agenda for Change' contract to provide NHS services.

Would you take an intervention, Minister?

Yes.

Thank you for that comment, where you're going to write to—or you've written to—the health boards. But could I also draw your attention to the fact that a lot of hospice services provided in the community are currently being funded through clusters? And as you and I know, one of the principles behind a cluster is that the clusters use their funding to pilot and start up ideas. The comments that have come back to me from organisations such as Paul Sartori are that once that cluster funding comes to an end, the LHBs aren't necessarily able or willing to take on and carry on the momentum behind initiatives that are working very successfully, so, constantly, the wheel is having to be reinvented, and I wonder if you might comment on that.

Well, I think there are two points there, aren't there? There's one about end-of-life care, which is a significant priority in primary care, which is no surprise given the profile of our population and the numbers involved, and there's much greater engagement and involvement from primary care in providing good end-of-life care—it's part of standard business in primary care, so not just our district nurses and our GPs. There is something there about our end-of-life care work that is definitely about how we deliver that in primary care.

The second point, I guess, is part of what Paul Sartori are also—. I visited them, and it was a very enjoyable and instructive visit too. There's something broader about the way in which we recycle moneys from primary care clusters, and I'll have more to say about funding primary care clusters when we get to some of the detail of the budget. You'll have to bear with me for a relatively brief period of time.

Going back to some of the comparisons made in work in other parts of the UK, we're aware of the work commissioned in Scotland by children's hospices across Scotland to understand their level of unmet paediatric palliative care need and to identify their population and demographic characteristics. NHS National Services Scotland, who undertook that work in 2018, have been invited to the next end-of-life care board in December to see what we in Wales can learn from that work and how best to apply it.

Alongside this, we are working with Tŷ Hafan and other hospices to understand the scale of service and workforce development that will be required to meet future palliative care needs in Wales. So, we continue to work closely with both statutory and third sector partners to deliver on our ambition that I set out to become the world's first compassionate country. To do so, we must be a nation that publicly facilitates, supports and celebrates care for one another during life's most testing times, especially those relating to life-threatening and life-limiting illness, to chronic disability, frail ageing, dementia, grief, and long-term care. Now, with collaboration and co-operation, we will support our communities to become more resilient to be able to cope with the challenges that life brings. And I really am grateful to Byw Nawr and the end-of-life care board for driving the compassionate country work forward in Wales, and I'll be meeting Byw Nawr again in the new year.

All of us, though, in our interactions with public and private sector organisations, can encourage them to embed this approach in everything that they do as well. As Members will know, the end-of-life-care board has been working with Cardiff University, Marie Curie and the Wales Cancer Research Centre to review the level of bereavement services across Wales, and that final report was received by officials and the end-of-life care board last week. They are currently considering the findings. I will provide an update to Members in due course, but I'm happy to confirm that it will be published ahead of the December end-of-life care board meeting, and I'll make sure that's directly provided to Members, as I know there is significant interest across parties in the work of that review. I'm also happy to confirm that I intend to make a Government statement in the new year on end-of-life care and how the information in the bereavement review's work will be taken forward.

So, to conclude, I believe we can be proud as a country of the significant progress we have made to widen access to hospice and palliative care here in Wales, but we know that there is more to do. So, we'll continue to work closely with the end-of-life care board and all of our statutory and third sector partners to make sure that everyone in Wales has access to high-quality end-of-life care in their location of choice.

I call on Angela Burns to reply to the debate.

Thank you, Presiding Officer, and I'd like to thank everyone who's taken part in this debate today because, of course, it touches on a subject that will affect all of us at one point or another in our lives, whether it's, well, ourselves, obviously, our loved ones, our families, our friends. I do want to pay tribute to Mark Isherwood, because, as the chair of that cross-party group, he has really, really shown great commitment and dedication to this area, and I don't think, actually, Mark, we recognise some of the work that you do on some of these less fashionable subjects. I'm very grateful, and I know that most of the Assembly is as well.

Everyone who's spoken—I'm not going to gallop around you all, but I want to say that many of you actually referenced wonderful examples in your own constituencies, and, through you, I think we should pay a great duty of thanks to all of those organisations for the work that they do in helping people through what must be one of the greatest transitions any of us will ever make, from this life to wherever we may be going afterwards.

Minister, you did—. Actually, before I come to you, Minister, Helen Mary Jones, your contribution was absolutely spot on. We accept your amendments to our motion. You picked up on very important points—the point about supporting carers through this and, of course, the fact that there's a variety of need out there and people will want to die in a hospital, they'll want to die in their home, they'll want to die in a hospice. It's down to that individual. They have that right at the end of their life to make that choice, and you're absolutely spot on. Thank you for both of those amendments.

Minister, I was marginally enraged when I first saw the Government amendment, because I do think that, as a Government, you tend to reach for the 'delete all' pen and not look behind the politics. But you drew my sting by explaining some of why you had done that and about the fact you were trying to pull it all together in a way that reflected what you were doing here so far, and no-one is disputing that there have been efforts made, strides made, there are plans in places. I was concerned, though, that the Government deleted the bit that acknowledged 23,000 people in Wales as having a palliative care need, including 1,000 children. Now, I know you mentioned it in your speech, but I think the reason why it was very important for that to be on the face of the motion is, because unless we know that that's what the need is, and no-one really talked here about the fact that we don't have the resource in place—. You know, like other parts of the health service, we do not have enough palliative care nurses, we do not have enough people with those specialist skills to help people through a very difficult time. Because you do need to have a certain ability, to have empathy, understanding—you know, it's a bit like having specialist nurses like Macmillan for cancer sufferers; you need to have that resource in place. And I think that if we could have a view of how many more specialist people we would need with the skills and the knowledge and the experience to provide palliative care, that is key. And recognising how many people need palliative care is actually a starting point.

That's what we're going to do—[Inaudible.]

Yes, but my point was that you deleted it from the motion and yet I think that knowing that number is very, very key.

Very, very quickly, actions on the recommendations made by the cross-party group is what we're seeking; a concerted drive to address the gaps in data collection, that the data collected is reported consistently and transparently—you've talked about the review of funding.

I think that I would just like to end by saying that we need to remember what this is all about. This is about helping somebody die well, and it's about helping their family to live through that experience and be able to move forward knowing that they did all they could for their loved one. So, if we truly want to be a compassionate country—and I have absolutely no doubt that we do—I think it behoves us to act with leadership, with real responsibility and real kindness, and this is why we've brought forward this motion. I'm sorry the Government had to amend it the way that they did, but I would ask the Members of this house to read our motion, to look at Plaid Cymru's amendments and to vote for the motion and for those amendments.

The proposal is to agree the unamended motion. Does any Member object? [Objection.] I defer voting until voting time.

Voting deferred until voting time.