marie curie in cardiff & vale university health board area
TRANSCRIPT
Marie Curie in Cardiff amp Vale University Health Board area
Cardiff amp Vale Hospice at Home Service
An overnight service which is co-ordinated locally by our experienced Senior Nurses the Marie Curie Hospice at Home service provides expert round-the-clock support enabling more people with a terminal illness to die in the place of their choice
In 20192020
bull 5440 commissioned hoursbull 297 patients supportedbull 7804 visitsbull 963 of people died in their preferred
place of death
Primary diagnosis of those supported by the service
Marie Curie Hospice Cardiff and the Vale
In-patient care to help people achieve the best possible quality of life whether thatrsquos through relieving symptoms supporting loved ones at a difficult time or advising on practical issues
In 20192020
bull 420 inpatients bull 348 patients received day therapy unit
sessions bull 1131 day therapy sessions deliveredbull 2216 community visitsbull 576 patients supported in the
community
Marie Curie activity in the Cardiff amp Vale area
Marie Curie fundraising group in the Cardiff amp Vale area
bull 202 volunteers including helpers community fundraising hospice and retail
bull 3 fundraising groups
bull pound2043242 raised including pound1087344 in legacies
bull 3 charity shops
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 Cardiff amp Vale UHB area made 107 calls to our helpline where known in 20192020
If you or someone yoursquore close to has a terminal illness wersquore here to support you Call our Support Line free on 0800 090 2309 chat online with us or visit mariecurieorgukhelp
Other conditions
Cancer
Cardiff and the Vale
Cancer 76
Other conditions eg MND COPD Dementia
30
The UKrsquos 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 Cardiff amp Vale 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
Phil
Har
dman
Mar
ie C
urie
Ben
Gol
dM
arie
Cur
ie
Phil
Har
dman
Mar
ie C
urie
Layt
on T
hom
pson
Mar
ie C
urie
Marie Curie in Cardiff amp Vale University Health Board area
Dying death and bereavement are inevitabilities that every individual will have to face at some point in their life It is everyonersquos 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 ndash in Cardiff amp Vale UHB area and across Wales as a whole
To improve the experience of those living with a terminal illness their families and carers in the Cardiff amp Vale 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 Cardiff amp Vale 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
In Cardiff amp Valersquos IMTP there is no comprehensive or long-term focus on palliative or end of life care The plan notes success in end of life care research with specific reference to a project which looks to lsquoprovide patient and family focused information about preferences and opportunities to improve end of life care at home enabling timely pain relief4 However there is no mention of palliative or end of life care when planning from 2019 and beyond
End of Life Care Delivery Plan
To facilitate and strengthen end of life care planning and delivery on a local level in the Cardiff amp Vale 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 Cardiff amp Vale 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 Cardiff amp Vale area an estimated 3140 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 life5
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 Cardiff amp Vale 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 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
Dying death and bereavement is everyonersquos business
Health board planning needs to have a long-term focus when considering end of life care
Cardiff and Vale UHB
Cardiff amp Vale UHB area
Cardiff amp Vale UHB area covers both Cardiff and Vale of Glamorgan local authorities bull Population of 500490 with 10985 over the age of 851
bull Between 2018 and 2020 an average of 4184 people died each year2
bull An estimated 3140 of these people would have benefitted from palliative care3
End of life care in Cardiff amp Vale UHB area
3140people would benefit from palliative care each year in the Cardiff amp Vale area
An estimated
Marie Curie in Cardiff amp Vale University Health Board area
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 Cardiff amp Vale UHB By 2040 the demand for end of life care is set to increase by 42 in England and Wales6
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 ndash including in homes care homes and hospices By 2040 it is anticipated that deaths in care homes and homes will increase by 1081 and 886 respectively7
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 Cardiff amp Vale 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 50580 unpaid carers in Cardiff amp Vale locality8 The number of carers has dramatically increased since the outbreak of the coronavirus pandemic with an estimated 196000 additional carers9 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 strategy 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 Cardiff amp Vale 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 family10 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
bull More information to be routinely provided following a death
bull An increase in public information on bereavement support options
bull More signposting by GPs bull Increased resourcing and steps to be taken to
tackle social isolation amongst the bereaved
If we want to see all residents in the Cardiff amp Vale area receiving the support that they need following a loved onersquos death these recommendations need to be considered and acted upon
Phil
Har
dman
Mar
ie C
urie
In 2011 there were an estimated 50580 unpaid carers in the Cardiff amp Vale area
Marie Curie in Cardiff amp Vale University Health Board area
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
4 Cardiff amp Vale University Health Board Integrated Medium Term Plan 2019-2022
5 Dixon J King D Matosevic T Clark M and Knapp M 2015) lsquoEquity in the Provision of Palliative Care in the UK Review of Evidencersquo Personal Social Services Research Unit London School of Economics and Political Science
6 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) pp329-336
7Ibid
8 Carers UK 2011 Census figures England Wales and Northern Ireland
9 Carers UK June 2020 Carers Week 2020 Research Report The rise in the number of unpaid carers during the coronavirus (COVID-19) outbreak
10 2020 Harrop E et al Supporting people bereaved during COVID-19 Study Report 1 Available from httpswwwcovidbereavementcomreports-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 mariecurieorguk
For more information about Marie Curie and our work in Wales contact
Bethan Edwards Policy and Public Affairs Officer Marie Curie (Wales)
E bethanedwardsmariecurieorguk
Please note photos without PPE were taken before the coronavirus pandemic
Charity reg no 207994 (England amp Wales) SC038731 (Scotland) F415c
Lowri Griffiths Head of Policy and Public Affairs Marie Curie (Wales)
E lowrigriffithsmariecurieorguk
Marie Curie in Cardiff amp Vale University Health Board area
Dying death and bereavement are inevitabilities that every individual will have to face at some point in their life It is everyonersquos 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 ndash in Cardiff amp Vale UHB area and across Wales as a whole
To improve the experience of those living with a terminal illness their families and carers in the Cardiff amp Vale 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 Cardiff amp Vale 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
In Cardiff amp Valersquos IMTP there is no comprehensive or long-term focus on palliative or end of life care The plan notes success in end of life care research with specific reference to a project which looks to lsquoprovide patient and family focused information about preferences and opportunities to improve end of life care at home enabling timely pain relief4 However there is no mention of palliative or end of life care when planning from 2019 and beyond
End of Life Care Delivery Plan
To facilitate and strengthen end of life care planning and delivery on a local level in the Cardiff amp Vale 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 Cardiff amp Vale 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 Cardiff amp Vale area an estimated 3140 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 life5
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 Cardiff amp Vale 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 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
Dying death and bereavement is everyonersquos business
Health board planning needs to have a long-term focus when considering end of life care
Cardiff and Vale UHB
Cardiff amp Vale UHB area
Cardiff amp Vale UHB area covers both Cardiff and Vale of Glamorgan local authorities bull Population of 500490 with 10985 over the age of 851
bull Between 2018 and 2020 an average of 4184 people died each year2
bull An estimated 3140 of these people would have benefitted from palliative care3
End of life care in Cardiff amp Vale UHB area
3140people would benefit from palliative care each year in the Cardiff amp Vale area
An estimated
Marie Curie in Cardiff amp Vale University Health Board area
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 Cardiff amp Vale UHB By 2040 the demand for end of life care is set to increase by 42 in England and Wales6
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 ndash including in homes care homes and hospices By 2040 it is anticipated that deaths in care homes and homes will increase by 1081 and 886 respectively7
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 Cardiff amp Vale 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 50580 unpaid carers in Cardiff amp Vale locality8 The number of carers has dramatically increased since the outbreak of the coronavirus pandemic with an estimated 196000 additional carers9 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 strategy 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 Cardiff amp Vale 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 family10 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
bull More information to be routinely provided following a death
bull An increase in public information on bereavement support options
bull More signposting by GPs bull Increased resourcing and steps to be taken to
tackle social isolation amongst the bereaved
If we want to see all residents in the Cardiff amp Vale area receiving the support that they need following a loved onersquos death these recommendations need to be considered and acted upon
Phil
Har
dman
Mar
ie C
urie
In 2011 there were an estimated 50580 unpaid carers in the Cardiff amp Vale area
Marie Curie in Cardiff amp Vale University Health Board area
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
4 Cardiff amp Vale University Health Board Integrated Medium Term Plan 2019-2022
5 Dixon J King D Matosevic T Clark M and Knapp M 2015) lsquoEquity in the Provision of Palliative Care in the UK Review of Evidencersquo Personal Social Services Research Unit London School of Economics and Political Science
6 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) pp329-336
7Ibid
8 Carers UK 2011 Census figures England Wales and Northern Ireland
9 Carers UK June 2020 Carers Week 2020 Research Report The rise in the number of unpaid carers during the coronavirus (COVID-19) outbreak
10 2020 Harrop E et al Supporting people bereaved during COVID-19 Study Report 1 Available from httpswwwcovidbereavementcomreports-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 mariecurieorguk
For more information about Marie Curie and our work in Wales contact
Bethan Edwards Policy and Public Affairs Officer Marie Curie (Wales)
E bethanedwardsmariecurieorguk
Please note photos without PPE were taken before the coronavirus pandemic
Charity reg no 207994 (England amp Wales) SC038731 (Scotland) F415c
Lowri Griffiths Head of Policy and Public Affairs Marie Curie (Wales)
E lowrigriffithsmariecurieorguk
Marie Curie in Cardiff amp Vale University Health Board area
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 Cardiff amp Vale UHB By 2040 the demand for end of life care is set to increase by 42 in England and Wales6
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 ndash including in homes care homes and hospices By 2040 it is anticipated that deaths in care homes and homes will increase by 1081 and 886 respectively7
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 Cardiff amp Vale 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 50580 unpaid carers in Cardiff amp Vale locality8 The number of carers has dramatically increased since the outbreak of the coronavirus pandemic with an estimated 196000 additional carers9 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 strategy 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 Cardiff amp Vale 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 family10 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
bull More information to be routinely provided following a death
bull An increase in public information on bereavement support options
bull More signposting by GPs bull Increased resourcing and steps to be taken to
tackle social isolation amongst the bereaved
If we want to see all residents in the Cardiff amp Vale area receiving the support that they need following a loved onersquos death these recommendations need to be considered and acted upon
Phil
Har
dman
Mar
ie C
urie
In 2011 there were an estimated 50580 unpaid carers in the Cardiff amp Vale area
Marie Curie in Cardiff amp Vale University Health Board area
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
4 Cardiff amp Vale University Health Board Integrated Medium Term Plan 2019-2022
5 Dixon J King D Matosevic T Clark M and Knapp M 2015) lsquoEquity in the Provision of Palliative Care in the UK Review of Evidencersquo Personal Social Services Research Unit London School of Economics and Political Science
6 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) pp329-336
7Ibid
8 Carers UK 2011 Census figures England Wales and Northern Ireland
9 Carers UK June 2020 Carers Week 2020 Research Report The rise in the number of unpaid carers during the coronavirus (COVID-19) outbreak
10 2020 Harrop E et al Supporting people bereaved during COVID-19 Study Report 1 Available from httpswwwcovidbereavementcomreports-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 mariecurieorguk
For more information about Marie Curie and our work in Wales contact
Bethan Edwards Policy and Public Affairs Officer Marie Curie (Wales)
E bethanedwardsmariecurieorguk
Please note photos without PPE were taken before the coronavirus pandemic
Charity reg no 207994 (England amp Wales) SC038731 (Scotland) F415c
Lowri Griffiths Head of Policy and Public Affairs Marie Curie (Wales)
E lowrigriffithsmariecurieorguk
Marie Curie in Cardiff amp Vale University Health Board area
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
4 Cardiff amp Vale University Health Board Integrated Medium Term Plan 2019-2022
5 Dixon J King D Matosevic T Clark M and Knapp M 2015) lsquoEquity in the Provision of Palliative Care in the UK Review of Evidencersquo Personal Social Services Research Unit London School of Economics and Political Science
6 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) pp329-336
7Ibid
8 Carers UK 2011 Census figures England Wales and Northern Ireland
9 Carers UK June 2020 Carers Week 2020 Research Report The rise in the number of unpaid carers during the coronavirus (COVID-19) outbreak
10 2020 Harrop E et al Supporting people bereaved during COVID-19 Study Report 1 Available from httpswwwcovidbereavementcomreports-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 mariecurieorguk
For more information about Marie Curie and our work in Wales contact
Bethan Edwards Policy and Public Affairs Officer Marie Curie (Wales)
E bethanedwardsmariecurieorguk
Please note photos without PPE were taken before the coronavirus pandemic
Charity reg no 207994 (England amp Wales) SC038731 (Scotland) F415c
Lowri Griffiths Head of Policy and Public Affairs Marie Curie (Wales)
E lowrigriffithsmariecurieorguk