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How can end of life care be improved?

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This isn’t a rhetorical question, Ann Lee, CEO of St Maragret’s hospice, is looking to put ideas into action. Here’s how you can get involved…

In the next 15 years it is predicted that, without reform, around 40% of the population will die alone without adequate care and support. Dying alone is one of the things we fear most, ahead of even being told we are dying*.

End of life care can often be something that we don’t want to give much thought to, but we should. What might have been the right model of care 10 or 15 years ago may not be now. Palliative care itself as a concept hasn’t been around that long and has seen a number of significant changes already.

”Palliative care itself as a concept hasn’t been around that long”

A bit of history: Dame Cicely Saunders is widely credited with introducing multi-disciplinary care of patients with terminal illnesses as recently as 1967 when she opened St Christopher’s in London, where medical, psychosocial and nursing care were combined. Previously there had been just a few places where patients received nursing and spiritual care but minimal medical input because it was considered a doctor’s job to cure people, not look after them in their final months and weeks of life.

Our hospice, St. Margaret’s, was founded 35 years ago originally in Taunton and now has a second in-patient unit in Yeovil. But even in this short time, we too have overseen tremendous changes in the way we look after patients and their families.

“Even in this short time, we too have overseen tremendous changes”

We are responding to a growing population who are living longer. More and more people choose to be cared for in the community with an increasing reliance on carers, both professional and volunteers, and family and friends.

Because of this rate of change, we want to make sure that we continue to respond proactively, anticipating what we need to do now to deal effectively with what is going to happen later. That’s why we are carrying out a review called ‘Fit for Future’ in conjunction with healthcare experts, carers, national charities, families, patient representatives, church leaders, academics, neighbouring hospices and the local authority, and we’d like you to be involved.

It is being chaired by Lord Paddy Ashdown, one of our vice-presidents, and represents one of the largest community engagement programmes in the country. The consultation process will last for over six months and, by October 2016, our whole community will have had the opportunity to help us create a sustainable model of care that will meet the needs of our population.

”We want to ensure as many people as possible can share their views”

We hope it will provide the opportunity for services to be co-designed, co-ordinated and integrated in the interests of patient and carer needs.

We want to ensure as many people as possible can share their views. We are doing this by encouraging everyone to visit our dedicated website where they can tell us what they think. We are also holding a series of community focus groups and asking questions on Facebook and Twitter.

Naturally we are happy for anyone to contact the team direct by post or email.

As the ideas come in, the expert panel is discussing them and assessing their viability. Recommendations will be made to the board and we expect pilot projects to be in place in early 2017. The new models of care will come into place by the end of 2017.

”We want as many people as possible to have a voice on what end-of-life-care should look like in the future”

No idea is a bad idea. We want as many people as possible to have a voice on what end-of-life-care should look like in the future.

While you may not have been affected by a life-limiting illness during your lifetime, one in three people in Somerset – whether personally or through a family member or friend – will at some point need the support of our hospice and that figure is similar throughout the country.

To have your say, simply visit www.fit4future.org.uk, follow the campaign on Twitter @StMargaretsF4TF and like our ‘Fit for Future’ Facebook page.

Alternatively, you can email the team at fitforfuture@st-margarets-hospice.org.uk or write to:
Fit for Future,
St. Margaret’s Hospice,
Heron Drive,
Bishops Hull,
Taunton TA1 5HA.

*ComRes Opinion Poll for Dying Matters ‘No Dress Rehearsals’ Aug 2011

Ann Lee is CEO of St Margaret’s Hospice, Somerset

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