Below is a clip from my Member's Debate on Palliative Care and its impact.
The full speech can be read here:
The next item of business is a members’ business debate on motion S5M-02197, in the name of Colin Smyth, on the Marie Curie report on challenging inequities in palliative care. The debate will be concluded without any question being put.Motion debated,
That the Parliament welcomes the Marie Curie report, Enough for everyone – Challenging inequities in palliative care, which highlights the findings of a seminar held on 15 September 2016; notes that the seminar focused on examining some of the barriers certain groups face in accessing palliative care; understands that 11,000 people who need palliative care in Scotland each year are not accessing it, meaning that one in four people who die in Scotland miss out on the palliative care they need; further understands that certain groups of people receive less palliative care than others with a comparable need and that this is now the responsibility of health and social care partnerships; considers that more effort should be made to identify triggers for palliative care in older people, particularly those with frailty; further considers the need for planning, developing and commissioning services to identify and reflect the palliative and end of life care needs of black and Asian people and other ethnic minorities; understands that there is still a lack of data on the level of need for palliative care for LGBT people in Scotland; further understands that people living in socially deprived areas are much less likely to access health and social care services; considers that more research must be done to understand the obstacles to palliative care in socially deprived areas; notes the report’s finding of the need for greater recognition of the issues relating to isolation, loneliness and spiritual needs in the delivery of palliative and end of life care; notes the view that more research needs to be done around certain groups who are less likely to access palliative care, and further notes the vision set out in the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care 2016-2021 that everyone who needs palliative care in the South Scotland region and across the country has access to it by 2021.
I refer members to my entry in the register of members’ interests, which states that I was employed by Parkinson’s UK when I was elected to Parliament. That employment has ceased.
I thank members from across Parliament for supporting my motion, allowing a timely debate on palliative care to take place today. It is just over a year since the Health and Sport Committee published its thorough and far-reaching report, “We need to talk about palliative care”. That was followed by the publication of the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care”, with its vision that everyone in Scotland who needs such care has access to it by 2021; I know that all members share and support that vision. It is therefore an opportune time to take stock, to reflect on what progress has been made in achieving that vision and what more needs to be done over the next five years to ensure that it becomes a reality.
Marie Curie’s excellent report, “Enough for everyone: Challenging inequities in palliative care” is an important contribution to that debate. The report brings together the key findings from discussions at a seminar held on 15 September 2016 by Marie Curie, where over 70 experts from across the country came together to talk about the challenges of inequities in palliative care and to seek solutions. The report highlights the research that was commissioned by Marie Curie and published by the London School of Economics in 2015, which estimated that one in four people who die in Scotland miss out on vital palliative care. That is an estimated 11,000 people in Scotland each year who need palliative care but do not receive it.
It is important to recognise the benefits of specialist palliative care, not just for those who require end-of-life care but for people with long-term conditions such as Parkinson’s, and other progressive neurological conditions, from the point of diagnosis. It is clear that over the next five years, more than 55,000 people in Scotland may not receive the palliative care that they need if we do not ensure that the vision of palliative care for everyone who needs it is delivered.
By delving below these figures and highlighting the barriers for those who receive less palliative care than others with comparable needs, Marie Curie’s work makes a significant contribution to the debate on how we can deliver that vision. Although it is not an exhaustive list, the report shows specific groups of people who are less likely to receive palliative care, including those aged over 85, those from black, Asian and minority ethnic communities, those who live alone, and those who live in areas of deprivation.
If we look at each group in turn, we can see some of the reasons for those inequities. In Scotland, nearly 82 per cent of deaths occur in people aged over 65, yet older people are much less likely to receive the palliative care that they need at the end of life when compared with those in younger age groups. The Marie Curie report highlights a number of reasons for that, including the fact that all too often,
“older people may think their illness is just them getting old. There are also factors around the under-reporting of serious illnesses and under-identification of older people for palliative care”.
This becomes more complex around the issue of frailty, with frail older people often dying without a defined single terminal illness and without receiving the benefits of palliative care. The Marie Curie report makes a number of recommendations to tackle that, for example by providing clearer information for older people regarding the services that are available to them and how to access them. More effort is needed to identify triggers for palliative care in older people, particularly in those with frailty. Practitioners need the right training and support to ensure that those who require palliative care are identified from the point of need.
The challenge of inadequate training and support has been identified by Marie Curie as creating a barrier to palliative care for those from black, Asian and minority ethnic backgrounds. There are now more than 200,000 people living in Scotland from a BAME background—double the level in 2001—but many do not access palliative care when they need it. The Marie Curie report highlights the fact that, when people receive palliative care, it is not always sensitive to the different cultural and religious needs of BAME groups. There is also a fear of discrimination, a lack of translation services and a shortage of female doctors for Muslim women.
As well as more training and support for those who provide palliative care, Marie Curie highlights a need for more research at ground level in the field of palliative care to ensure that the needs of those in BAME communities are identified and that evidence-based solutions are found to meet those needs.
Research that was funded by Marie Curie into access to palliative care for lesbian, gay, bisexual and transgender people found that discrimination and a fear of stigma were factors for LGBT people accessing palliative care.
There is also a clear disparity in access to health and social care services between those who live in the most and least deprived communities throughout the country. For example, the report highlights that those who live in the most deprived communities are 33 per cent less likely to die at home than those who live in the least deprived communities. In the Marie Curie report, a number of reasons are given for why people from deprived communities might not access palliative care, and the provision of far more public health and social care support in deprived areas is recommended as a way to break down those barriers.
It is clear from the Marie Curie report that there are significant inequities when it comes to the provision of palliative care across Scotland. If we are to meet the 2021 vision, we need to break down those barriers. The report highlights a number of recommendations and common themes that can help us to do that. One such theme is on research and data. Professor David Clark, who, as members know, leads the University of Glasgow’s end-of-life studies group based in Dumfries, stated in his report for the Health and Sport Committee in 2015:
“A serious information deficit needs to be filled on data relating to the provision of palliative care in Scotland”.
There is a distinct lack of research on palliative care compared with other health issues. I am pleased that the Government acknowledged that in its strategic framework and I hope that, when the minister responds to the debate today, she will outline how the Scottish Government plans to support the development of an evidence base to show progress towards its 2021 vision.
The forthcoming national review of health and social care targets provides an opportunity to reconsider the indicators that are currently used by health and social care partnerships when measuring palliative care in order to ensure that better data can be collected to fully measure the inequities that exist, for example by measuring access by clinical condition and social economic group.
Breaking down the barriers that are highlighted by Marie Curie means providing personalised, effective palliative care in a setting that suits the individual. Therefore, it was encouraging to read in the Government’s health and social care delivery plan that was published last month:
“The availability of care options will be improved by doubling the palliative and end of life provision in the community”.
I hope that the minister will outline exactly how that will be achieved. For example, will it mean additional resources for integration joint boards to scale up their palliative care provision in the community?
The final theme from the report that I want to touch on is that talking about palliative care and dying does not come naturally to many—including myself—even though death is the most unavoidable event in our lives. Of all the areas in the Government’s strategic framework, that is the one in which least progress has been made. The Health and Sport Committee wrote to the cabinet secretary on 16 November about progress in the implementation of the framework and, in her reply, she said that the Government did not plan
“to run a national campaign in relation to death and dying”.
I am keen to know how the Government intends to deliver the commitment to support greater public discussion on death, dying and care at the end of life.
I am very conscious of time but, although I have been able to touch on only a fraction of the issues that are raised by the report, I know that other members will more than adequately fill the gaps that I have left. I look forward to listening to those speeches and to hearing from the minister on the points that I have raised.
I thank Marie Curie not only for its work on the report that we are debating today, but for the outstanding care and support that it provides for more than 8,000 people and their families around Scotland. Those thanks extend beyond Marie Curie to all the organisations that are involved in the delivery of palliative care, including charities and our amazing national health service staff as well as local council and third and private sector social care providers.
I have focused in my speech on tackling the inequities in the provision of palliative care, but I know that tens of thousands of families benefit from the outstanding palliative care that is delivered across Scotland every year. However, we are ambitious, which is why we are all determined that the Government should ensure that care is there for everyone who needs it, wherever they live and whatever their background.
You can watch the full debate and find out more information here.