there must surely be a place for advocacy…

In this post Helen Vernon, advocate at Sefton Pensioners Advocacy Centre (SPAC), talks about collaboration, compassion, choice and advocacy:

In February I attended an excellent conference called Palliative End of Life Care: Collaboration, Compassion, Choice.  The event was attended by a wide range of interested parties including commissioners, consultants, GP’s, nurses and members of the voluntary sector.

One interesting thing that almost every speaker opted to do was to relate their speech to their own personal experience of losing a family member.  This had been the motivation for each of them to follow their career path, either because the experience had been so poor or because they wanted to replicate a positive experience for others.

There were several key pieces of information that came out of the day and I have attempted to summarise some of these below.

The keynote speaker was Jacquie White who is the Deputy Director for Long Term Conditions in NHS England with responsibility for improving the quality of life and experience of end of life care for people with Long Term Conditions and their carers.   As part of her presentation she showed this slide about the six ambitions she would like health and care professionals to sign up to to achieve improvements in care.  There are obvious links between these ambitions and advocacy.

Jacquie also spoke about their plans to develop an “orientation” process for people who have been diagnosed with a long term condition and she described it as a ‘how to’ for living with that condition.  If this became the norm there must surely be a place for advocacy within this programme.

Alison Colclough from St Luke’s Hospice in Chester spoke about their homelessness project and whether people who are street homeless get choice at the end of their life.  This also resonated strongly with our advocacy work and it made me consider whether we have explored this sufficiently when we are promoting our service. 

The theme of collaboration ran strongly throughout the day and there was a lot of advice about how this could be achieved. There were stories of success and advice about approaches to improving inter agency working.  Annamarie Challinor, Head of Service Development (Macmillan) for The End of Life Project shared this image with us, which we could use as a visual reminder of how broadly we are promoting the COPA project.

Helen Vernon, Advocate, Sefton Pensioners Advocacy Centre (SPAC)

 

 

 

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Late Fragments: Everything I want to tell you about this magnificent life by Kate Gross 2014

For some time now I’ve been reviewing the occasional book for Macmillan Cancer Support, the latest Late Fragments by Kate Gross is about how to live with cancer whilst concurrently preparing for death from the perspective of a young woman otherwise in her prime with a young family and caring husband.

The book is very easy to read , it grabbed and held my attention from the very first words right through to the end. In the Introduction she states “When I was three, I told my Mum that I kept my words in my head, in a clear plastic bag. Now it is time for me to take them out, to arrange them into this story.” A born storyteller she has left her boys a legacy they will surely treasure and reminded me of the frailty of life and the need to spend our time wisely.

I read it very quickly in two days and know one day I shall read it again.This book is arranged in 10 short chapters, describing Gross’s childhood memories, the fulfilment and stress of work, the slog and joy of family life and her “fat, jolly little babies”.

I liked it’s truthfulness, honesty, admittance of great changes to her personality, ways of being and how she copes with this.

Kate died on Christmas morning 2014, however her legacy goes beyond that of her immediate family and friends. Kate is an elegant and straightforward writer, sprinkling wit and bitterness in all the right places. She strikes a balance between putting the reader in her shoes and expressing the impossible solitude of facing what you have to face.

Kate with her boys

Our peer advocates often have to walk in other’s shoes to experience the full impact of their situations. That they do this with such compassion is a testament to their own experiences and deep commitment to helping others in similar situations.

Although this book is about a young woman and her family the messages it contains are universal. They leave the reader with a deep sense of compassion for others in a similar place. If like me and the wonderful advocates with whom we work, readers are working to support those other’s then reading this book reminded me that to re-engage with our compassionate self can only serve to enhance our work.

I’d like to thank all those people working on the Cancer Older People’s Advocacy programme for their continued compassion towards others and commitment to changing people’s lives for the better.

Kath Parson, OPAAL

Training for Volunteer Advocates

Oxfordshire Advocacy (OA) sharing our journey of the Cancer, Older People and Advocacy project in Oxfordshire.

We held our first peer advocate training course in house on the 21st July with the next one coming up on the 8th September.

Feedback from attendees

We had a great group of experienced OA volunteers and people new to advocacy and all with their own personal experience of cancer.

Two key questions kept coming up:

1. Where do we find all the relevant information to support the people we will be working with? “We were able to reassure the attendees that Macmillan and other local agencies have amazing banks of information which are constantly updated to ensure everyone is able to find out what services are available”. (Naomi Karslake – OA Co-ordinator)

“We also pointed attendees to pages 21-41 of the Older People’s Advocacy Alliance booklet which is a course hand out that ‘Cancer and its impact on Older People’s Lives’ provided the relevant answer to this question.” (Julie Walters – OA Co-ordinator)

2. Where do we draw the line between advocacy and befriending? As peer advocates we are sharing their experience in a different way to how we do as a generic advocate. “A support group for Cancer, Older People and Advocacy advocates will be crucial to address many of the issues and questions that arose on the day.  We do not as yet have all the answers”. (Naomi Karslake – OA Co-ordinator)

 

Naomi Karslake

Attendee’s feedback

Rosie – “I am 65 and have cancer and faced appointments, results and complaining about practitioners alone.

 I was heartened to meet so many compassionate volunteers who will be there to support individuals through the process with the committed project leaders.

“The training will enable me to participate locally and nationally to inform , influence and peacefully persuade others to ensure  individuals with cancer  are no longer treated as “victims” but as individuals who have rights to information and treatment which they choose by informed consent”  (Rosie Young – OA Volunteer)

Keith – “Our first training session – There were about 18 of us. Most of us were retired but nearly a third had yet to reach senior citizen status. Several of Oxfordshire Advocacy co-ordinators joined the group. Naomi our experienced trainer led the group. All of us had either a relative or close friend succumb to cancer or had survived the condition.

First sessions have to get definitions out of the way. We looked at a few case studies. The group was light hearted so we could dwell on helping rather than getting caught up with the enormity of the task. We noted that with increasing life expectancy the numbers of people involved with relatives and friends with malignant disease will increase. We were reminded that other conditions are just as debilitating and fatal as cancer.

The afternoon was delegated as to how advocacy skills could be used and adapted to helping those with loved ones suffering from cancer”.  (Keith Beswick – OA Volunteer)

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Team OA