Marie Curie in Betsi Cadwaladr University Health Board area

Betsi Cadwaladr Overnight Services

An overnight service which is commissioned based on activity. It covers the whole of Betsi Cadwaladr geographical area and Marie Curie nurses provide nine-hour visits.

In 2019/2020:• 320 patients supported• 2,265 visits• 20,368 hours of care delivered• 92.1% people died in their preferred

place of death

Primary diagnosis of those supported by the service

Betsi Cadwaladr Rapid Response Services

Rapid Response is a reactive service currently operating in Conwy & Denbighshire and Flintshire & Wrexham to support the GP and District Nurse Out of Hours service. We are commissioned to provide one registered nurse and one healthcare assistant through the night (22:00 – 7:00). They go out and see patients as and when is needed and will see multiple patients during one shift to avoid admissions into hospital.

In 2019/2020 this service supported 887 patients over 1,462 visits.

Betsi Cadwaladr UHB areaBetsi Cadwaladr UHB area covers Anglesey, Gwynedd, Conwy, Denbighshire, Flintshire and Wrexham local authorities.

• Population of 699,559, with 21,283 over the age of 851

• Between 2018 and 2020, an average of 8,046 people died each year2

• An estimated 6,035 of these people would have benefitted from palliative care3

Marie Curie activity in Betsi Cadwaladr UHB area

Marie Curie fundraising group in the Betsi Cadwaladr area

• 138 volunteers, including helpers, community fundraising, hospice and retail

• 7 fundraising groups• £782,305 raised, including

£250,631 in legacies

UK-wide Information and Support line

Marie Curie provides practical information and support on all aspects of life with terminal illness, dying and bereavement over the phone, via web chat, online, in print, and through an online community.

People in Betsi Cadwaladr UHB area made 61 calls to our helpline where known in 2019/2020.

If you or someone you’re close to has a terminal illness, we’re here to support you. Call our Support Line free on 0800 090 2309, chat online with us or visit mariecurie.org.uk/help

Other conditions e.g. MND, COPD, Dementia

Cancer

Betsi

Cancer 76%

Other conditions e.g. MND, COPD, Dementia

24%

The UK’s leading end of life charity, Marie Curie is here to support everyone in the UK through all aspects of dying, death and bereavement, including in Betsi Cadwaladr University Health Board (UHB) area. We support the NHS by providing frontline care. We provide vital bereavement support for family and friends and we help the nation prepare for death, to help make things better at the end.

Betsi Cadwaladr UHB

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Marie Curie in Betsi Cadwaladr University Health Board

Dying, death and bereavement are inevitabilities that every individual will have to face at some point in their life. It is everyone’s business.

Coronavirus has highlighted and exacerbated many challenges faced by patients and loved ones who use palliative care services, and those who work within the sector – in Betsi Cadwaladr UHB and across Wales as a whole.

To improve the experience of those living with a terminal illness, their families and carers in the Betsi Cadwaladr area, it is imperative that end of life care is prioritised alongside other major conditions.

As part of the first national End of Life Care Delivery Plan in 2013, Betsi Cadwaladr UHB was required to develop and publish its own palliative and end of life care strategy and regularly report on the progress made. This is no longer the case and each health board now have to include plans for end of life care within their wider Integrated Medium-Term Plan (IMTP). The result of this, is that consideration and inclusion of palliative and end of life care within strategic health board-level planning can be intermittent and patchy. This contributes to existing health inequities.

Betsi Cadwaladr UHB has never been successful in producing a balanced and Board-approved IMTP and strategic documents are hard to come by. This impacts on the level of public scrutiny that is able to take place, which is a necessary part of ensuring services are patient centred and continually improving.

In Betsi Cadwaladr UHB’s draft three-year plan for 2018-2020, it was positive to see palliative and end of life care mentioned thoroughly throughout the report4. Despite the fact palliative and end of life care is mentioned within the section on improving care for older people, Betsi Cadwaladr UHB does recognise that end of life care is beneficial for children, families and adults too. When planning ahead, Betsi notes that it will increase awareness of issues around death and dying, ensure equitable access to palliative care services, encourage discussion about end of life and implement advance care planning across all care settings. Marie Curie welcomes the aims and ambitions outlined in the draft three-year plan but are disappointed that the current operational plan for Betsi Cadwaladr (for quarter 3-4 of 2020/21)5, has no mention of palliative or end of life care.

End of Life Care Delivery Plan

To facilitate and strengthen end of life care planning and delivery on a local level in the Betsi Cadwaladr area, the Welsh Government must also make end of life care a focus on a national level. To do this, an ambitious, resolute, and fully resourced successor to the End of Life Care Delivery Plan must be developed and translated into practice in localities across Wales.

Our healthcare system is based on the principle of supporting us from cradle to grave, with health and social care policy rightly focusing on preventing ill health. But it is also important to prioritise those who are terminally ill. A new Delivery Plan would provide a framework for the delivery of services in Betsi Cadwaladr UHB area, enabling more accountability and ensuring equitable access to care and support for everyone who needs it.

Health inequalities

We know that there is huge unmet need for palliative care in Wales. In the Betsi Cadwaladr area, an estimated 6,035 would benefit from palliative care each year (based on average mortality data from 2018 to 2020). Despite this, one in four people are still unable to access the care and support they require at the end of their life6.

Some groups are far less likely than others to access the palliative care that they need, including black and minority ethnic communities, those over 80, the LGBTQ+ community, and those with conditions other than cancer. In order to ensure that end of life care policy and practice is socially inclusive in the Betsi Cadwaladr locality, we must seek to better understand the barriers facing some groups and not others.

Our manifesto for the 2021 Senedd elections asks the next Welsh Government to develop an action plan to proactively find out from people of all backgrounds and characteristics what their

Clear and accessible strategic plans are essential for public scrutiny and service improvement.

End of life care in Betsi Cadwaladr UHB area

Dying, death and bereavement is everyone’s business.

6,035people would benefit from palliative care each year in the Betsi Cadwaladr area.

Marie Curie in Betsi Cadwaladr University Health Board

expectations are at end of life. We hope to see you supporting this work in your area, engaging with community groups and encouraging them to participate where possible.

Trends in location of death: community-based care

An ageing population and a rise in comorbidities means providing specialised and person-centred palliative care will become increasingly important for Betsi Cadwaladr UHB. By 2040, the demand for end of life care is set to increase by 42% in England and Wales7.

When looking at projected location of deaths over the next two decades, research demonstrates that we will see a significant increase in deaths occurring in the community – including in homes, care homes and hospices. By 2040, it is anticipated that deaths in care homes and homes will increase by 108.1% and 88.6%, respectively8.

If we are to support people to die in their place of choice, and these projections are realised, we will see less people dying in Betsi Cadwaladr UHB hospitals. To deliver the best possible care under these circumstances, we need to see a rapid increase in funding and support for services based in the community.

Care in the community includes care and support provided by unpaid carers. In 2011, we know that there were an estimated 78,512 unpaid carers in the Betsi Cadwaladr locality9. The number of carers has dramatically increased since the outbreak of the coronavirus pandemic, with an estimated 196,000 additional carers10 in Wales as a whole. We need an improved strategic approach to identify, respect and support the constituents in your area that are unpaid carers.

Bereavement

Bereavement can affect both physical and mental health and can even impact on mortality; the

benefits of pre- and post-bereavement support for people of all ages is clear.

We have been pleased to see the development of a universal bereavement framework for Wales and a new set of bereavement standards through the End of Life Care Delivery Board. However, in the midst and aftermath of a pandemic, we need to see prompt implementation of this strategy and its universal rollout across all health boards in Wales, including in the Betsi Cadwaladr area.

The Marie Curie Research Centre at Cardiff University has been exploring the delivery of end of life care and bereavement support during and beyond the coronavirus pandemic. To enable the roll out of effective and person-centred bereavement support the final findings and recommendations of this research need to be used on a local and national level.

The first report of interim data identified high levels of emotional support needs and difficulties getting support from friends and family11; limited access to professional bereavement services, including for those most vulnerable in their grief; and a lack of information on bereavement support.

Recommendations from researchers at present include:

• More information to be routinely provided following a death

• An increase in public information on bereavement support options

• More signposting by GPs • Increased resourcing and steps to be taken to

tackle social isolation amongst the bereaved.

If we want to see all residents in the Betsi Cadwaladr area receiving the support that they need following a loved one’s death, these recommendations need to be considered and acted upon.

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In 2011, there were an estimated 78,512 unpaid carers in the Betsi Cadwaladr area.

Marie Curie in Betsi Cadwaladr University Health Board

References1 StatsWales, 2020. Population estimates by local health boards and age.

2ONS, Deaths registered in England and Wales (2018, 2019).

3 Statistic based on estimation that 75% of people who die will have benefitted from end of life care: Etkind. S., et al. 2017. How many people will need palliative care in 2040? Past trends, future projections, and implications for services. BMC Medicine, 15.

4Betsi Cadwaladr UHB, 2018. Three Year Plan 2018-2021.

5Betsi Cadwaladr UHB, 2020. Q3/4 Action Plan.

6 D Dixon, J., King, D., Matosevic, T., Clark, M., and Knapp, M., 2015. ‘Equity in the Provision of Palliative Care in the UK: Review of Evidence’, Personal Social Services Research Unit London School of Economics and Political Science.

7 Bone, A., Gomes, B., Etkind, S., Verne, J., Murtagh, F., Evans, C. and Higginson, I., 2018. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative Medicine, 32(2), pp.329-336.

8Ibid.

9 Carers UK, 2011 Census figures England, Wales and Northern Ireland.

10 Carers UK, June 2020. Carers Week 2020 Research Report: The rise in the number of unpaid carers during the coronavirus (COVID-19) outbreak.

11 Harrop, E. et al., 2020. Supporting people bereaved during COVID-19: Study Report 1. Available from https://www.covidbereavement.com/reports-and-publications [Accessed 17 February 2020].

Thank you to everyone who supports us and makes our work possible. To find out how we can help or to make a donation, visit mariecurie.org.uk

For more information about Marie Curie and our work in Wales contact:

Bethan Edwards Policy and Public Affairs Officer Marie Curie (Wales)

E: bethan.edwards@mariecurie.org.uk

Please note photos without PPE were taken before the coronavirus pandemic

Charity reg no. 207994 (England & Wales), SC038731 (Scotland) F415c

Lowri Griffiths Head of Policy and Public Affairs Marie Curie (Wales)

E: lowri.griffiths@mariecurie.org.uk