Marie Curie Response

Demography of and implications for

Introduction

1. We welcome the opportunity to input into the Scottish Affairs Committee’s call for views on Scotland’s demographic trends and their implications for public policy in the context of the devolution settlement.

2. We particularly want to highlight issues facing the ageing population in Scotland and the implications this has in regards to multiple long term conditions, people living with terminal illness and the increased need for palliative care. These considerations have a wider impact on the devolution settlement, including future social security.

3. Marie Curie’s vision is for a better life for people and their families living with a terminal illness. Our mission is to help people living with a terminal illness, their families and carers, make the most of the time they have together by delivering expert care, emotional support, research and guidance.

4. In Scotland we treat close to 7,500 people each year through community nursing services, our hospices in and , and other services.

Demographic Challenges

5. 54,000 people died in Scotland in 2014. However, this figure is expected to increase to 63,400 by 2038-39, a 17% increase1. Many of these people will have been living with a terminal illness and will need palliative care.

6. In Scotland, it is estimated that around 40,000 of the 54,700 people who die each year need some form of palliative care. Yet recent research, carried out by the London School of Economics and Political Science (LSE) and commissioned by Marie Curie, suggests that nearly 11,000 people who need palliative care in Scotland each year are not accessing it2. That means that across Scotland about 1 in 4 people miss out on the palliative care they need.

7. With the number of people dying in Scotland due to increase by 17% in the next 25 years this figure could increase to over 12,500 if we do nothing to address this problem now. This is similar to the rest of the UK.

––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––– 1 http://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/population/population- projections/population-projections-scotland/2014-based/list-of-tables 2 https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report- full-lse.pdf Page 1 of 5

8. Scotland’s population is also ageing; the number of people aged 75 and over is projected to increase from 420,000 to 780,000 by 2037 (an 86% increase)3. Scotland’s population is ageing quicker than the rest of the UK, which means the problem is likely to be more acute than in the rest of the UK.

9. This shifting demographic, coupled with an increasing average life expectancy means that people in Scotland are living with more complex needs than before. The majority of over-65s in Scotland have 2 or more long-term conditions, and the majority of over-75s have 3 or more conditions4. Evidence suggests that 44% of adults in the last year of life have multiple long-term conditions5.

10. Many of these people will be living with a terminal illness. By that, we mean they will have reached a point where their illness is likely to lead to their death. Depending on their condition and treatment, they may live with their illness for days, weeks, months or even years after this point.

11. Terminal illness can include conditions like dementia and other neurological conditions, cancer, chronic obstructive pulmonary disease (COPD) and heart failure. In the case of people living with multi-morbidities, many of who are older, they may be managing a number of these conditions at the same time.

12. Everyone living with a terminal illness will need a combination of services throughout their care and at the end of their lives. These will be met by a diverse range of providers in a wide number of settings.

13. But one thing we do know is that they will need care and support for all or part of that time.

14. This not only means the care and support that organisations like Marie Curie, the NHS, local authorities and Integration Joint Boards deliver, but also means examining systems and processes around housing, transport, infrastructure and social security systems to provide those with a terminal illness, and their carers, the necessary assistance to live well.

Impacts on services

15. This increasing demographic change – an ageing population and increases of people dying in Scotland will mean that demands and pressures on health and social care services will increase. An analysis in NHS Forth Valley of the impact of an ageing population on demand for hospital beds shows a projected increase in demand for bed days for those aged 65 or over from around 2,500 in 2014, to over 4600 (an increase of 84%) by 20356. These figures can be replicated in every health board area7.

16. Research shows that people in the last 6 months of life spend anywhere between 10 and 22 days in hospital8. The number of people dying in Scotland each year is also due ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––– 3 http://www.gov.scot/Topics/People/Equality/Equalities/DataGrid/Age/AgePopMig 4 The Challenge of multimorbidity in Scotland, The Scottish School of Primary Care’s Multimorbidity Research Programme, Professor Stewart Mercer: http://www.jitscotland.org.uk/resource/challenge-multimorbidity-scotland- stewart-mercer/ 5 http://www.gov.scot/Topics/Health/Services/Long-Term-Conditions 6 nhsforthvalley.com/wp-content/uploads/2014/02/HIIA-FVRH.pdf 7 http://healthier.scot/2015/12/07/doctors-contribute-to-public-conversation-on-the-future-of-the-nhs-in-scotland/ 8 https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2015/triggers-for- palliative-care-scotland-summary.pdf Page 2 of 5

to increase by 13% over the next 25 years meaning additional pressures on acute services.

17. Reform in Public Services in Scotland is focused around shifting the balance of care from the acute to the community. The ’s current 2020 Vision9 is focused around ensuring that people live longer healthier lives at home or in a homely setting. Work launched by the Scottish Government on a national conversation10 on the future of health and social care in June 2015 aimed to build upon this.

18. The Scottish Government has committed to ensuring that everyone who needs palliative care has access to it by 2021 in its recently published Strategic Framework for Palliative and End of Life care11.

19. We know that most people would also prefer to be cared for and die at home. Investing in palliative care, the majority of which is provided in the community setting, helps people achieve this aim and translates into real savings in terms of acute resources and cost savings.

20. The London School of Economics and Political Science research12 estimates that providing palliative care to those that need it could potentially generate net savings of more than £4million in Scotland.

21. Evidence from the Nuffield Trust, using the Marie Curie home-based palliative care nursing service in the UK, also suggests that investment in community and specialist palliative care services is almost completely offset by savings in the acute setting by reducing unnecessary hospital admissions, acute interventions and delayed discharges13. This research estimates that the NHS could be able to realise potential savings of nearly £500 per person by enabling for people at the end of life to be cared for in the community or at home. This could reduce pressure on hospital beds and has the potential to be a more efficient and effective use of NHS resources.

22. Over 50% of people currently die in Scottish hospitals, but the majority would prefer to die at home or in a homely setting. The Nuffield Trust data shows that investing more resources in community based palliative care outside of the hospital setting will save money by reducing hospital admissions at the end of life. Using the Quality Innovation Productivity and Prevention programme (QIPP) estimate of £3,000 per hospital death, around £21 million could be saved in Scotland.

23. Not only does this mean that the person gets the care they prefer during the course of their condition and at the end of their lives, but it is also likely to save valuable statutory funds which can be reinvested elsewhere, as well as relieve the pressure on acute services.

24. Ensuring that everyone who needs palliative care has access to it will help meet many of demographic challenges set out in this response. It will also contribute to making health and social care services more sustainable.

––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––– 9 http://www.gov.scot/Topics/Health/Policy/2020-Vision 10 https://healthier.scot/ 11 http://www.gov.scot/Resource/0049/00491388.pdf 12 https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report- full-lse.pdf 13 http://www.nuffieldtrust.org.uk/sites/files/nuffield/publication/end_of_life_care.pdf Page 3 of 5

25. However, work needs to be done to ensure that people have equitable access to palliative care when they need it. Evidence presented in our report Triggers for palliative care report highlights a number of key issues that act as barriers to prevent people accessing the care that they need14. These include:

 Prognostic uncertainty and hard to predict disease trajectories.  A failure or reluctance to identify certain conditions (e.g. dementia and Parkinson’s) as terminal by professionals.  A lack of understanding of what palliative care is and what it can achieve for people with conditions other than cancer by both professionals and people with a terminal illness and their families.  For some conditions, such as COPD, a paucity of research which demonstrates potential benefits of palliative care on patients’ health outcomes (compared to the amount of research on lung cancer, for example).  A lack of confidence from professionals in delivering care appropriate for people approaching the end of their life, for example, thinking that initiating end of life care discussions is someone else’s role or concerns about the legal standing of advance decisions.

26. To break down these barriers, we need to ensure that palliative care is everyone’s business, that people fully understand palliative and hospice care and know when to refer to specialists, and everyone working in health and social care work together to ensure the best outcomes for people.

27. This includes specific training for health and social care professionals to:

 Ensure all medical and nursing staff, including those working in the community; know about their local palliative care teams and how to contact them.  Make sure staff, patients and their carers have enough information about palliative care. We have a Marie Curie factsheet15 that can be used, or signposting people to our Information and Support services can help with this16.  Help clinical leads increase access to palliative care for all those who could benefit. This includes people with all terminal illnesses, as well as people with multiple sclerosis, Parkinson’s disease and acute strokes.

Scottish Developments in Palliative Care

28. The Strategic Framework for Action on Palliative and End of Life Care17, recently published in December 2015, sets out a vision for the next five years, that by 2021, everyone in Scotland who needs palliative care will have access to it.

29. The framework also contains outcomes and ten commitments to support improvements in the delivery of palliative and end of life care across Scotland. This specifically includes development of strategic commissioning guidance for Health and Social Care Partnerships, development of a new palliative and end of life care educational framework and supporting clinical and health economic evaluations of palliative and end of life care models.

––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––– 14 https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2015/triggers-for- palliative-care-full-report.pdf 15 mariecurie.org.uk/careexplained 16 mariecurie.org.uk/help 17 http://www.gov.scot/Publications/2015/12/4053 Page 4 of 5

Recommendations

30. Marie Curie would like the Committee to consider the following recommendations:

31. Palliative care is an essential component in developing an appropriate and sustainable approach to Scotland’s demographic challenges. In order to meet the growing needs of Scotland’s ageing population palliative care needs to be available to everyone who needs access to it when and where they need it.

32. Marie Curie would like to see:

 Delivery of the Strategic Framework for Action on Palliative and End of Life Care in Scotland.  Continued investment in palliative care services across Scotland, focusing on the needs and wishes of patients.  Recognition by Integration Joint Boards of the importance of palliative care.  Better data collection for service planning, delivery and quality.

Further information:

Susan Lowes Policy & Public Affairs Manager, Scotland Marie Curie 14 Links Place Edinburgh EH6 7EB Phone: 0131 5613902 Email: [email protected]

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