Marie Curie – providing palliative care during a pandemic
Richard Meade, Head of Policy and Public Affairs Scotland, reflects on the organisation's response to COVID-19 and looks to the future.
Marie Curie provides care and support for people who are dying or living with a terminal illness, as well as their loved ones. In Scotland we have nurses caring for people in their own homes or in our hospices in Glasgow and Edinburgh, both with and without coronavirus. We also have a free telephone support line.
Like so many sectors, palliative care was hit hard by the coronavirus pandemic, the third sector in particular, but it was clear from the beginning that the sector had a vital role to play. Not only were people dying of COVID-19, but people also continued to die of other diseases too, and in much higher numbers than normal. Some of our most marginal communities have been particularly badly hit with those living in the most deprived communities twice as likely to die of COVID-19 than those in the least deprived. There is also some evidence to show that those from South Asian communities in Scotland are being disproportionately affected, as well as other community groups.
Being on the frontline of the crisis, at Marie Curie we faced unprecedented challenges and being innovative led to many new ways of working. We expanded our community palliative care services to seven-day operations, increased the hours of our support telephone line and introduced new bereavement telephone support. In the Lothians, we established a new Rapid Response service enabling urgent home assessment and intervention to support unstable patients on the same day as referral.
Greater partnership working and eagerness to collaborate, problem solve and share experiences also became the norm. Responsiveness of external agencies and others to requests for help, knowledge and advice was excellent.
We increased how we used virtual and digital technology during this time, adapting services that would usually take place in person at our hospices. We plan to continue this and support people with a mixture of video consultations (NHS Near Me), telephone calls and home visits.
One of the hardest and most emotional challenges we have faced during this time was managing visits of relatives and friends to inpatients in our hospices. We always did our best to enable family, with adequate PPE, to visit loved ones at the end of life, and no one has died alone.
However, the restrictions and suspension of normal visiting clearly had an impact on families and our staff. It meant that some patients opted to be discharged so that they could be with their families, despite their complex and unstable health. Where possible we continued to provide support at home.
We don’t yet know what the full impact of this crisis period will be on staff. Caring for someone during their final weeks and days of life is both a privilege and a challenge at any time.
There have been many key learnings from the last three months which will inform our future practice. We will continue to face very real challenges to our fundraising efforts and we know that statutory partners will equally face challenges with resource. The health and social care system will need to recover, but the demand from our communities for support and care is likely to grow, not recede with the epidemic.
Terminally ill people, their families and carers will still need support and we need to ensure that we retain those innovations that have improved how we support people, but we must go further. To do this will require everyone, health and social care, the third and independent sectors, as well as the community. We need to see a whole system approach with a focus on improving the experience people get at the end of life. This will require even greater collaboration, sharing of resources, mobilising of community assets and most importantly brave leadership to drive progress. Only by doing this can we ensure that everyone who is terminally ill and approaching the end of life gets the care and support they need.
Anyone looking for information about all aspects of end of life or grieving, whether you have practical, emotional or financial questions or concerns, or if you just want someone to talk to, can contact the Marie Curie Information and Support line 0800 090 2309 or visit our website (this link will take you away from our website).
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