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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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

Bournemouth Older People’s Forum workshop

The nine issues that people affected by cancer have told Macmillan Cancer Support matter most to them include clinical outcomes as well as the impact of cancer on the whole of a person’s life.  Dorset Macmillan Advocacy tries to measure the impact of its service with reference to these outcomes. Where possible we participate in networking and training to inform our understanding of each outcome and how we might better support people affected by cancer. ‘I want to die well’ is one outcome which has led us to take part in the Dorset Compassionate Communities network and to participate in training by the Hospice Education Alliance on Advance Care Planning as well as to mark the annual Dying Matters Awareness week.

Bournemouth Older People’s Forum held an interactive workshop entitled ‘Good Endings’ in May as part of the national Dying Matters week: ‘You only die once’.   BOP Chair Pat Lewis invited the Dorset Macmillan Advocacy team at Help and Care to assist. Emma Jones, a first year student at Bournemouth University studying Social Work, was on placement at Help and Care and worked with us to plan and deliver the session.

Emma Jones at Bournemouth Older People’s Forum

Emma writes:

‘I had attended a BOP meeting earlier in the year and was impressed by the information provided and range of topics discussed. 

 Prior to planning this workshop I knew very little about the subject of death, and in particular putting plans in place for this.  It was a topic of conversation that I had not explored and something that I felt uncomfortable thinking about.  The more I read about planning for and thinking about one’s death the more I understood and appreciated the importance of thinking about and preparing for the practical aspects that need to be considered such as whether you would like to be buried or cremated, would you like to donate an organ and what music you’d like to be played at your funeral, all of which are important things to think about.  Not thinking about these and not discussing with friends or family would mean that they would be faced with making the decisions for you which can be a daunting task. 

I’ve learnt the value of preparation and planning for departure which can make the world of difference, not only in helping to make one feel happier and have some control over their future plans but also for loved ones who do not then have the responsibility to make such significant and potentially challenging decisions on your behalf.

The workshop was received well, everyone participated and we received some positive feedback. In particular, I found the varying responses and opinions surrounding what was important to each individual really interesting and this emphasised that we are all individuals and what is important to one person, such as making a will, may not be important to another.’

We aimed to introduce the idea of Advance Care Planning in a practical way. Participants enjoyed the interactive nature of the session and particularly the upbeat ‘wrap up’ that Pat suggested, and which Emma led, where we looked to the future and shared our ideas for one new, different or challenging thing that we would like to have a go at in the next year.

 

Advance Care Planning: Vital for Living Well!

Members of staff and volunteers from Dorset Macmillan Advocacy attended an Advance Care Planning Workshop in Dorchester last week. The event was hosted and run by Director of Education Carole Walford and Trainer Carole Hewitt from Dorchester’s Weldmar Hospice in association with the Hospice Education Alliance.

 

The HEA is a jointly owned initiative between Hospicecare Exeter and Weldmar Hospice Trust Dorset

The day centred on understanding the issues around discussing and facilitating Advance Care Planning and was well attended by a variety of staff and volunteers from organisations locally making the whole event a great opportunity to learn from the wealth of experience in the room.

The day opened with a discussion on the importance of Advance Care Planning as vastly preferable in most cases to the crisis management which may end up as guesswork on the part of relatives or carers as to the wishes of their loved one. Dying Matters have produced a powerful short film to help raise awareness of the importance of having discussions about your wishes which can be viewed below.

 

The workshop also included communication skills training to help initiate and manage those difficult conversations with partners and their families; appreciating and utilising underlying differences in individual styles is another tool to improve our communication with older people affected by cancer.

We split into groups to work with and appraise examples of available tools for Advance Care Planning including the NHS Dorset document ‘Planning for Your Future Care’ which can be viewed by clicking here

We also reviewed Macmillan’s own ‘Preferred Priorities for Care’ which is available along with ‘My Advance Decision to Refuse Treatment Document’ in the back of their very comprehensive and clear information pack ‘Your Life and Your Choices: Plan Ahead’.

Comparing and contrasting different documents all designed to achieve the same goal helped highlight strengths and weaknesses in each but also alerted us to the fact that one particular document may not suit all.

Important take home information concerned the legality of Advance Care Planning documents; in particular the ‘Advance Decision to Refuse Treatment’ document which must be witnessed by someone who is not expecting to benefit from the will and includes the words ‘this applies even if my life is at risk’ in order to be legally binding.

A second duplicate workshop will be hosted in Salisbury on July 17^th and we shall be encouraging any of our Volunteers who are able to consider attending this informative and useful day.

Jenny Rimmer,  Macmillan Senior Advocate, Dorset Macmillan Advocacy

It’s Dying Matters Awareness Week: Dr Kate Granger talks about dying

This week is Dying Matters Awareness Week and to mark it Doctor and writer Kate Granger gave the second ever Dying Matters Annual Lecture to mark the beginning of Dying Matters Awareness week, which runs from 12-18 May.

Kate, a Specialist Registrar in Geriatric Medicine, has incurable cancer. After five gruelling rounds of chemotherapy following her diagnosis with a rare and aggressive form of sarcoma in July 2011, she made the decision to stop receiving treatment and concentrate on enjoying a good quality of life.

Since then, Kate has written two books, and blogs and tweets extensively about living with cancer and, in particular, her experiences as a patient. She has also launched the “hello my name is” campaign after becoming frustrated by the number of medical staff who failed to introduce themselves to her when she was receiving treatment.

The lecture ‘You Only Die Once: Kate Granger’s story’ took place at the Royal College of Physicians in London. As part of the event, Dying Matters commissioned a film of Kate and her husband, Chris.

We’ve been following Kate on Twitter and she’s now following this blog through Twitter too. We recently sent Kate a copy of Every Step of the Way.  A feature of a number of the stories in the book detail how some health professionals were impersonal and lacked empathy. Kate’s message about communication is key so we’re supporting her “ hello my name is” campaign and we hope you will too.

Where does advocacy fit with ‘natural support networks’ and MDTs?

Tony Walter drew two circles to demonstrate how a person with cancer is simultaneously at the centre of a team of health, social care and voluntary sector professionals – the multidisciplinary team (MDT) and at the centre of their own ‘natural support network’ comprising their family members, friends, neighbours, work colleagues, congregation and wider acquaintances.  While I felt comfortable as a paid charity worker sitting in the MDT circle I felt that a volunteer advocate is different.

Tony Walter is Director of the Centre for Death and Society at the University of Bath and he was speaking at the annual conference organised by Lewis Manning Hospice in Poole.  Tony explained that there is not yet enough research into the support available to family carers from naturally existing networks as opposed to the support from health and social services.  He described some projects around the world which seek to mobilise communities or to mobilise a person’s natural networks.

Conference programme

In an ideal world, Tony concluded, natural support networks are strong and people need medical expertise not holistic care from an MDT.  However, Tony argued somewhat controversially to my mind, palliative care programmes that continue to expand holistic care of patient and carer without also helping to mobilise natural support networks risk further professionalising dying and disempowering communities’ own capacities to provide support.

Volunteer advocates work to the brief of their advocacy partner but they do inevitably come into contact with members of their partners informal network.  Should the advocacy partner wish to explore how to talk to family or other network members about their illness and the support that they would like from them then a volunteer advocate can do this with them.  In this way the volunteer can help a person to mobilise their own network.  Advocacy support is also available to the carers and family members of a person with a diagnosis who are also ‘affected by cancer’. Needless to say our advocates are also frequently called upon to help people get a grip on who is who within their MDT.

Our volunteer advocates considered where they felt themselves to fit in the scheme of two circles.  Owing to the voluntary nature of their work and the type of trusting relationship that they can build with their advocacy partner they seem to fit in the ‘natural support’ circle even though they come from a project operating in the other circle!  Some felt the circles should overlap creating a Venn diagram with a section just for volunteers and others felt they should be free floating satellites.

Carole Hewitt, project lead for Dorset Compassionate Communities

It was immediately obvious that volunteer advocates could be instrumental in helping to meet one of the challenges which Tony identified, that is; how to integrate natural and professional support networks.  In the meantime Dorset Macmillan Advocacy is contributing to the work of Dorset Compassionate Communities and planning for Dying Matters week in May.

Express your views and record your views

Life expectancy in Dorset is good and it’s rising.  But it’s only relatively recently that progressive illness has become the main cause of death in England.  That brings obvious challenges for those caring for the people affected.

Royal Bournemouth and Christchurch Hospital’s Understanding Health talks for the public focussed on this difficult topic last month. Dr Ros Pugh and Dr Sean Weaver said ‘We believe its vital to talk about End of Life care’.

Dr Ros Pugh is consultant for End of Life care at the Royal Bournemouth and Christchurch Hospitals and is responsible for in-hospital care, the Macmillan Unit and community nursing.  Dr Sean Weaver is a gastroenterologist who is also chair of the End of Life Steering Board for Dorset CCG and Associate Medical Director for Care and Governance at the Trust.

L to R Graham Willett, Chair Dorset Local Cancer Champions Board, Ros Pugh, Consultant for End of Life Care at Royal Bournemouth and Christchurch Hospitals, Margaret Wright, volunteer advocate

A short video by Dying Matters demonstated how many people feel its important to talk about End of Life and yet the great majority have not put plans in place – less than 50% of people have made a Will and only 11% have funeral wishes recorded.

‘Expressing and recording your views while you have the capacity to do so is important’ they said.  When mental capacity is lost through sudden or progressive illness ‘it is so helpful to doctors and nurses to be able to understand what the person wants in terms of treatment and care’.

We heard about national and local initiatives to promote the benefits of advance planning to the public and to professionals.  The Council’s  Dorset For You website has a section dedicated to planning ahead.

The ‘take home message’ of the afternoon from the speakers was:

Please think about how you would like to be treated and where you would like to be. Think about your strong views on healthcare and make decisions now while you can.  Express your views to someone whom you trust.  Record your views and let people know that you have done so.

Find me help

December’s Later Life Newsletter from DWP has the following news item which many people affected by cancer may find helpful, particularly at a time of emotional distress, and many advocacy services may wish to use as a resource: 

“Find Me Help”: Dying Matters and Macmillan Cancer Care have teamed up to produce a new free online resource, Find Me Help –  a directory or service finder aimed at people in the last years of life, their family, carers and friends which lists over 3,200 charitable services across the UK, including palliative care, meals, transport, social groups, etc.

Kath Curley, Cancer Advocacy Co-ordinator, Beth Johnson Foundation

NHS England End of Life Workshops

Several weeks ago Kath Parson blogged about the series of workshops being held around England during the  autumn to engage with the public and professionals on proposals to improve end of life care. These workshops follow on from  the publication of More Care, Less Pathway, the report of the independent review into the Liverpool Care Pathway

I attended the workshop held in Crewe and it was indeed attended by a range of professional, voluntary sector and members of the public who had experience of the Liverpool Care pathway – both good and bad.

The workshop was introduced by Ian Leech  from the People in Partnership Group (Dying Matters). The aim of the workshop was to gather views on the proposals and  ideas on improvements to care in the last days of life. This was done by group discussion with  questions being asked, around the following themes,  to initiate discussion:

Personal palliative care plans:

•             Do you agree with our proposal to encourage the use of such plans?

•             What should it be called?

How might personal palliative care plans work in practice?

•             Where should it be kept?

•             How can it be used most effectively?

When should personal palliative care plans start?

•             Who should start the conversations and how?

How can we improve our proposals for improving care in the last days of life?

•             What else is missing from our proposals?

A copy of the Engagement Document  can be found on  the NHS England website.

For those unable to attend the workshops but who would like to have input on the work being carried out you can also record your views on that website. The engagement period for this work ends on 6 January 2014.

Kath Curley

Cancer Advocacy Project Lead, Beth Johnson Foundation

Dying Matters Awareness Week

The North Staffs and Stoke on Trent Cancer Advocacy Project for Older People in conjunction with EngAGE Stoke on Trent 50+ Forum, Saltbox and AgeUK North Staffs organised a display in Hanley Library to mark Dying Matters Awareness Week from 13^th – 19^th May 2013. This year’s theme “Dying Matters: Be ready for it”  has 5 practical steps for people to take:

1. Make a Will

2. Record your funeral wishes 

3. Plan your future care and support

4. Register as an organ donor

5. Tell your loved ones your wishes

A copy of the leaflet, which gives more information, can be found here 

Display

The 50+ Forum had previously highlighted that generally there is a lack of knowledge about these matters so together the organisations involved produced a leaflet giving some basic information. The leaflet was freely available during Awareness Week at the library together with other relevant information. The impact of the event is to be evaluated to inform future actions.

Kath Curley