Meeting of the Parliament 09 March 2016 [Draft]
I am honoured to again host Marie Curie staff and volunteers in our Parliament and to head up the members’ business debate. It is a particularly special year for Marie Curie, as this year marks the 30th anniversary of the great daffodil appeal.
It might seem strange to refer to the annual Marie Curie daffodil appeal as a happy event when one considers the work of the charity, but it is. It gives a sense of us all working together to help our neighbours, friends and family. The yellow spring flower, to me, is a mark of an organisation that—from the volunteer fundraisers and helpers through to the professional and admin staff and the medical and nursing staff—is determined to provide the best possible care and attention to those living with terminal illness and those who love them. As Marie Curie states,
“Every day matters when you’re living with a terminal illness”,
and it wants to help people make the most of the time that they have. Marie Curie fulfils that aim in different ways. “Person-centred” is the technical jargon: it means “the best way possible”, with the wishes of the individual always at the forefront.
The hospice service has hospices in Glasgow and Edinburgh, and they are friendly and welcoming places, whether residential or day care. Annually, care is provided to more than a thousand in-patients in addition to the many thousands of home visits and additional day services.
The helper service currently operates in four local authority areas and provides emotional and practical support to people living with terminal illnesses and their families and carers. The service operates through volunteer helpers, and I am delighted that Marie Curie plans to roll it out across the rest of Scotland.
Everyone knows about the Marie Curie nursing service, which consists of expert nurses working 24/7 in people’s homes right across the country. It is such a vital service, helping people to stay at home, surrounded by those they care about most and where they are most comfortable.
The Marie Curie nurses supported over 4,700 people in 31 local authorities across Scotland in 2014-15, providing over 36,000 visits.
The information and support service offers the Marie Curie support line, which provides confidential help for anyone who has questions, needs support or just wants to talk. The informative website has expanded to become the Marie Curie community, an online forum where experiences can be shared and support given. Again, that shows inclusive working together in care.
Another aspect of the work of Marie Curie is participating in policy formation. It is always constructive and speaks from the broad base of experience.
The starting point is that everyone should have the right to palliative care when they need it, and the campaign run by Marie Curie and other voluntary organisations has raised awareness of the issue with successive Governments and Parliaments, resulting in a much greater understanding of the issues and a greater willingness to talk about them.
It is excellent that Marie Curie gets involved in that work. It shows in so many ways in our Parliament; for example, the recent Health and Sport Committee report “We need to talk about palliative care” recognised the work that the voluntary sector has done in the area, as did the Scottish Government’s vision in the strategic framework for action on palliative and end-of-life care.
People are living longer, with more complex and multiple conditions. More people are dying in hospitals, putting more pressure on acute services. The investment in palliative care in communities provides the care that people want and has the potential to prevent unnecessary admissions and delayed discharges, and to reduce acute care costs.
Provision of palliative care in communities requires partnership working between health and social care and with the voluntary sector.
Not everyone living with a terminal illness in Scotland is getting the care and support that they need. Marie Curie reckons that around 40,000 of the 54,000 people who die each year need some form of palliative care. Around 11,000 people in Scotland miss out on that care every year.
The research evidences inequity of access over palliative care, especially for those over 85, those who live alone, those from black, Asian and minority ethnic communities, those from deprived communities and those with terminal conditions other than cancer.
We can make palliative care better, but we can do it only by partnership working between health and social care services and great use of the voluntary sector. As Marie Curie says, palliative care is integrated health and social care if it is done sensitively and properly. Hospital staff know that. Marie Curie gave us a quote from a member of a hospital’s staff that sums up much of this:
“In the past, we’ve had patients fit enough to go home but, by the time the service was available, they weren’t and so they ended up stuck in the hospital until they died”.
That is not what we want for people we love, or indeed for anyone in our society.
There is much to do, but I believe that the will is there to do it and that, if we all work together, we can make it better.
I know that my colleagues have much more to say, so I will close by referring once mores to the 30th anniversary of the great daffodil appeal. In that 30 years, more than £80 million has been raised across the UK and more than 80 local Marie Curie fundraising groups have been set up, including a very active group in East Kilbride, which I represent.
In 2015, the appeal funded more than 30,000 hours of nursing care and emotional support. As a result of the work by fundraisers, there is support in Scotland for more than 7,500 people who are living with a terminal illness and for their carers and families. That work covers 31 local authorities—there is still one to go, but Marie Curie will get there.
The fundraising allows the charity to work in partnership with national health service boards and local authorities to develop the innovative and integrated services that we know are necessary. I applaud the work of staff and volunteers across Marie Curie, who are working towards their vision of a better life for people who are living with a terminal illness and for their families. I encourage as many people as possible, in and outwith the chamber, to support this year’s great daffodil appeal.
17:16