At the Staffordshire Dying Matters conference

Kath Curley of Cancer, Older People and Advocacy delivery partner Beth Johnson Foundation and Staffs & Wolves Cancer Advocacy and Support Project Manager shares a post recently published on their own project blog. She tells us about her attendance at a recent conference marking Dying Matters Week:

Dying Matters Week in Staffordshire was celebrated by a Palliative and End of Life Conference organised by University Hospitals of North Midlands on Thursday 11^th  May. The Conference was entitled “I didn’t want that: Why patients’ wishes matter” and was attended by over 250 delegates from across the Midlands. BJF had a stand to promote the dementia and cancer advocacy projects and was therefore able to join the Conference.

The conference was packed

There were some eminent speakers including Dr Sara Russell, Head of Research and Clinical Innovation at Hospice UK, who showed a very thought provoking film from ZdoggMD; “Ain’t the way to die” which you can find here  

Sara’s message was that professionals should be asking “What matters to you?” rather than “What’s the matter with you?”

Amanda Cheesley, Professional Lead Long Term Conditions and End of Life Care with the Royal College of Nursing followed on and very much reiterated Sarah’s messages.  She opened by talking about the “essence” of the person – who we are, what we are – doesn’t go away when someone  dies or is dying. We should look at what is important to people emotionally, physically and spiritually.

 Jan Cooper, Regional Liaison Advisor at the General Medical Council discussed the End of Life/ Palliative Care Guidance. Decision making should be a partnership and this will require a change of culture. At one time professionals made the decisions, then it swung to patients making the decision but it should be co-production – joint decision after listening, discussing and sharing information.

 

After lunch there were two more “professionals “   presentations from Claire Henry – the Chief Executive Officer of the National Council for Palliative Care and Dr Katherine Bristowe , a post-doctoral  researcher at the Cicely Saunders Institute, Kings College, London. She has a particular interest in widening access to palliative care, and recently worked on the ACCESSCare project (funded by Marie Curie), a national qualitative interview study of LGBT people facing advanced illness and bereavement.

At this Conference the best was most definitely left until the end. The Conference closed with a presentation from Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices. He was a carer for his late mother Joan for 5 years as she had vascular dementia. He told us about his beautiful mother, Joan Whitelaw, NOT the disruptive lady in bed 6! He talked about his experiences with health professionals during his time as  a carer and the importance of reassuring carers that they are doing a wonderful job. 

Tommy travels across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers to carry out their difficult but vital role. Lessons to be learnt for people caring for someone with any terminal condition. There was not a dry eye in the Conference!     

Joe Potts, Macmillan End of Life Care Facilitator, University Hospitals of North Midlands  is to be congratulated on a stimulating, thought provoking conference – a job really well done. 

Kath Curley, Staffs & Wolves Cancer Advocacy and Support Project Manager

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We too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves

Today’s post is a really thoughtful piece from Emily Brown, Volunteer Manager at Dorset Advocacy, part of the Dorset Macmillan Advocacy partnership:

It is a sad truth that the people we support at Dorset Macmillan Advocacy have been diagnosed with cancer or are caring for their loved one who have cancer.  It is not unusual then that we come into contact with people who have experienced a great deal of loss in their lives or may experience loss during the course of the advocacy partnership. We, as advocates, often find that we are supporting people though some of the most difficult times in their lives and so it is not surprising therefore that we find ourselves personally affected by their circumstances.  This is particularly true of our Macmillan Advocates as they themselves have had experience of cancer, and so are likely to recognise parallels at times, with those people they support.  As well as supporting people who are bereaved we too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves. 

One of the coordinators on our Macmillan advocacy project felt that inviting volunteers at Dorset Advocacy to come together and share their experiences and feelings on the subject of bereavement might help us to recognise these emotionally difficult times and use them to identify ways of protecting and looking after ourselves.

Initially it was thought that this would be specifically for Dorset Macmillan peer advocates, but through the course of discussions about the training we found that the issues raised were likely to affect all of those volunteers who support vulnerable people across the county and that paid advocates too could benefit greatly from this training, so we decided that it should be opened up a wider group at Dorset Advocacy.

Kate Woodhouse (trained bereavement counsellor) facilitated this training on a sweltering hot summer’s day in late July and a dozen or so of us crammed in to the sauna that was Dorset Advocacy’s training room.  There was a mixture of advocates from our volunteer base and paid advocates, all of whom work/volunteer for Dorset Advocacy projects. We spent some time chatting over lunch and sharing ideas and experiences before we reorganised ourselves and sat in a circle.  This was a no-barriers style training and so we were not behind tables with note pads: we were sitting opposite our colleagues, ready to listen and to share.  Kate ensured that we felt safe within this space and asked us to be considerate and respectful to those who spoke as well as those who chose not to.

Despite the heat it felt as though those who attended were comfortable enough to explore the sensitive subject of bereavement/loss and what it meant to them.  We took turns to choose and present objects that represented our own experiences of loss.  Many individuals in the group used these objects as a means through which to explain a loss they had experienced and reflect upon it.

We were also encouraged to relate personal experiences, worries, anxieties and difficulties to marbles and add them to a jug of water prompting us to consider how we as people can only cope with so much before we run out of capacity. We explored ways that we, as individuals, can look after and protect ourselves alongside offering support to others so as to ensure that we are in a position to give support.

What this training highlighted to me was the importance of having a free and safe space to enable advocates to speak honestly and openly about their experiences.  All of the people at the training had different experiences and had been affected differently by them.  We must remember this and ensure that those people who are offering support and sharing the weight of worries and emotions with others are, in turn, able to share theirs and are encouraged to take time and recognise when to focus attentions on themselves.

Emily Brown, Volunteer Manager, Dorset Advocacy

The Big Conversation

Every year in May, Dying Matters and its coalition members host an Awareness Week, which gives an unparalleled opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda.
It’s Awareness Week this week and it runs from 9-15 May with the theme ‘The Big Conversation’.

Did you know that research carried out during last year’s awareness week discovered that:

• 71% of the public agree that if people in Britain felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met
• Just 35% of adults said they had made a will
• Just 27% had let someone know their funeral wishes
• Just 7% had written down wishes or preferences about the care they would want if they couldn’t make decisions
• Just 18% had asked a family member about their end of life wishes

Our colleagues at Dorset Macmillan Advocacy are supporting Dying Matters week. Their display stand is promoting Advance Care Planning and the Cancer Older People and Advocacy service in Christchurch library all week.

You can join in The Big Conversation by looking out for and attending local events.

• You can also follow Dying Matters on Twitter, Facebook, LinkedIn, YouTube and Pinterest. 
• You can Tweet about it, always including the hashtag #BigConversation.
• You can also join in the #BigConversation on Twitter. Between 1-2pm GMT every day of Awareness Week Dying Matters will be hosting a Tweetchat on a variety of topics relating to dying, death and bereavement – and they’d love you to join in. Find out more. 

To find out more and see how else you can support The Big Conversation, click here

Marie McWilliams, National Development Officer, OPAAL

“I have little choice but to find a way to cope. To get up in the morning, to live.”

I’ve just read a moving blog by Leigh Kendall who is mourning the loss of her baby son Hugo who died aged 35 days. It’s about loss and coping and will speak to many of us. It may also be helpful to our peer volunteer advocates who support older people affected by cancer who have experienced loss.

Leigh beautifully puts into words details of how she copes with loss and how people react to her situation.

She says:

how do I cope?

How do I cope when I live the life that should not be mine (or anyone’s for that matter).

Well, I just do.

I have little choice but to find a way to cope.

To get up in the morning, to live.

To find a way to survive, to thrive, to explore the opportunities the world has to offer.

Yes there are days when it feels like I cannot cope. When I want everything to go away and to go back to the way it should be.

Leigh Kendall

Anyone who has suffered loss will know these feelings. Life goes on as normal for everyone else when our own lives have changed inexorably. We all cope differently, our strategies are different but we’re simply trying to survive.

You can read Leigh’s blog and her other posts by clicking here

Marie McWilliams, OPAAL

Workshop on caring for the bereaved

Our advocacy support is available to people affected by cancer, not only those people with a diagnosis, and we are already have partnerships with people who have lost their family member to cancer.

Nicola Symes a counsellor and former Palliative Care Nurse came to Help and Care in July to train staff and volunteer advocates of Dorset Cancer Advocacy at a one day workshop.   In addition Help and Care’s Gateway helpline team who take referrals for the service wished to gain a better understanding of how to engage with callers who may be experiencing difficult emotions.

Nicola Symes

Nicola’s programme covered understanding bereavement, the grief process, family dynamics and how to help or hinder.

Nicola  provided many examples from her own experience of what can be helpful, and unhelpful, for those who have lost a loved one. Her warm and relaxed style encouraged us to reflect on how our instincts might be a guide to help us to react well in what can seem like a difficult situation.

Participants said afterwards that Nicola was a good communicator, they appreciated her measured pace and they had enjoyed the day.  Our evaluation asked what in particular participants would take away from the day and comments included: ‘That grief is a personal process’; ‘Be more aware and sensitive when dealing with someone who has suffered a loss’; ‘The knowledge that I can help even if just by being there’; ‘Listening, doing your best and allowing the bereaved person their experience’; ‘More confidence – it’s OK to be unsure what to say’.