Posts Tagged ‘palliative care’

Do you have experience of Palliative Care services?

10 July 2014

I’ve been engaged by Marie Curie to research the experiences of disabled people when they reach the end of their life – in other words, disabled people who had palliative care.

I’m looking to interview carers of disabled people who have sadly passed away.

Marie curie

 

These will be telephone interviews lasting no longer than 20 minutes. Total anonymity is guaranteed.  The stories (good and bad) will be fed to Marie Curie who hope to publish a report in the Autumn which is likely to recommend change.  The calls are completely unscripted and allow people an opportunity, in free flow, to talk about their loved ones’ experiences.

People are very welcome to email me at this address

mark.shrimpton@disabilitysolutionsworldwide.com

You are also welcome to note that I have had personal experience of this issue.

Thanks so much.

Mark Shrimpton.

 

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Motor Neurone disease – End of Life, One familys’ story (Update)

26 March 2013

This is an update from Helen Findlay, who first shared her familys’ story with us in 2009

Helen Findlay

THE FINDLAY REPORT    was first published informally in 2006.

It was written by me and other family members and relates the experience that my 85-year-old father, James went through in trying to get appropriate care after he was diagnosed with Motor Neurone Disease.

It contains a day-by-day account covering four months detailing what was happening to him and the activities of health and social care services around him in the community, in a care home and in hospital where he eventually died. It also contains recommendations from us about how his experience of care could have been so much improved and enabled him to have had a ‘good’ end of life experience.

From the diagnosis of MND until my father’s death was just seven weeks. In those seven weeks we all lived a lifetime. They were weeks coloured by stress, problems, despair, feelings of helplessness, intense sadness and tears all because of the way that my father was treated, as well as what the disease was doing to him, the way my mother, Joan, who had dementia was treated and the way we, his children and other family members were treated. But it was a time that was also coloured by mounting anger. And it is the anger that is still driving my family and me on in pushing for the problems and solutions that we identified to be implemented not just locally with the care services where my father lived but also nationally as what happened to him can be multiplied many times over.

If you want proof of this then you only have to (more…)

Motor Neurone Disease – Findlay story updated

8 March 2011

An update to this article  regarding the Findlay family and their quest to improve the palliative care system for other familys’.

Helen recently emailed Carer Watch :

I’ve attached a copy of a newsletter to this email produced by the NHS National End of Life Care Strategy Team that’s just come out today. I did an interview with the editor focussing on the communications problems with my father’s care and it’s featured on page 7 of the newsletter – I thought you would be interested to see it. Our Findlay Report is still going out – I recently sent a copy to a hospice in Limerick, south west Ireland to someone who works on user involvement projects there and who I met at the conference in Bangladesh; also to a social worker at a hospice in Hartlepool who has passed it on to a lecturer in health and social care at Teeside University with a view to using it as part of the courses being run for students there. Five years since my father died and it’s all still relevant so we’ll keep going with it.

 EoLC newsletter-pg7-Feb2011

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National Council for Palliative care – Spiritual care

25 August 2010

The UK  National Council for Palliative Care   promotes good end of life care for all who need it . Palliative care i.e.  care for people with a life-limiting condition or who are nearing the end of life includes spiritual care. However, it means different things to different people.

We’re gathering views on this subject and would like to pose two questions for you to consider and let us know your thoughts:

What does spiritual care mean to you?

What would you expect from spiritual care if you, or someone close to you, were ill or at the end of life?

If anyone has a view on this please send email to Jo Black. Jo is Involvement Manager at the National Council for Palliative Care

contact details :    j.black@ncpc.org.uk


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