Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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’.

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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.

Dying Matters Week DMA display at Christchurch Library

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

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Aneesah’s tale

On World Cancer Day Aneesah, a professional advocate from ICANN (Independent Community Advocacy Network North), gives us her take on delivering older people’s cancer advocacy:

My experience as working as an advocate on the Cancer, Older People and Advocacy project has varied vastly. Through my work I have found that one of the greatest obstacles both with professionals working in the cancer field and the clients themselves, was initially actually understanding what “advocacy” is. Although in general terms most clients and professionals alike understand that an advocate can effectively aid in putting across opinions, in many other respects I found that lines can be frequently blurred.

The ICANN team with Aneesah on the left

It can sometimes be unclear as to what an advocate can and cannot do. An example of this occurred when I was attending an appointment with a client and they were given various treatment options, which they appeared to be confused about. Once I relayed the information to the client put forward from the consultant, the client then felt that it was I as the advocate that needed to make the best decision on her behalf! I had to encourage and empower her, to explore the options by using me as a sounding board, and then to talk through together what she wanted to do.

These situations can as an advocate be challenging but upon reflection I also now acknowledge that it is important as an advocate to be able to voice concerns to medical professionals. With the same client at a subsequent appointment, when it was obvious to me that she was not taking it what was being said, I asked if we could take a break and this gave me the opportunity to fully discuss in depth the pro and cons of the various treatments that she was being offered.

This ensured that the client was able to make a clearer conscious choice and in turn made them feel more at ease as they became more fully aware of what to expect. It also meant that at future appointments we were able to prepare in advance, questions she wanted to ask and things we needed to discuss, which in turn gave her more confidence about being in control of her cancer journey.

Similarly as an advocate I found that on some occasions health professionals viewed my presence when attending with clients with some suspicion. This can sometimes be intimidating for the professionals involved as I have been under the impression that maybe they felt that I was there to act as an independent witness to ascertain any faults or failure of medical procedures on their part. However, once they become familiar with me and how advocacy can facilitate the client in a positive way they too began to see the benefits of having an advocacy service for their patients . The most prominent example being that many of the medical professionals involved in cancer treatment do not physically have the time or capacity to thoroughly go through the finer details with all their patients. With advocacy support they then have returning patients who are more confident and comfortable, and less likely to miss medical appointments, as they are more aware of what tests or procedures they are attending for, what future plans are, and what to expect from their patient experience.

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Many clients are understandably confused or feel disorientated particularly when it has not been long since they have been diagnosed. They are also given a considerable amount of information which initially may be difficult to not only understand but also to accept. Being an advocate has given me the opportunity to facilitate people in focusing what they would actually like to do regarding treatment or finding out about other services that would improve their quality of life.

As an advocate I have realised that it is often easy to concentrate only on the client who has been diagnosed with cancer. I have realised that cancer can have an equally profound and devastating effect not just on the patient but the family and friends around them also, and have seen first-hand the value of support to carers

More recently I have had a client that has been diagnosed with cancer three times in the last ten years. Although she herself was going through emotional turmoil it was equally difficult for her partner to come to terms with a situation that had been ongoing for such a long length of time. In this situation advocacy was required by both. They each needed someone to listen to them as they went through the same journey encountering different emotions from two perspectives.

I would consider that my role as an advocate has been beneficial, particularly to those who are vulnerable and most isolated. I have also become aware though that even those clients who are fortunate to have an extended network of family and friends can still feel alone in their personal journey. I have come across situations where clients have felt more at ease in voicing their anxieties to me as I am someone who is independent and non- judgemental. Often people feel that there are things they cannot discuss with those closest to them due to fear, awkwardness, embarrassment, and sometimes pressure to feel positive and optimistic when they are actually not feeling these things. One of the benefits of advocacy to the client is to offload and explore these concerns.

Aneesah Bana, Advocate, ICANN


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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 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.

 


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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 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’.

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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 17th 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


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Dorset Cancer Champions Board visit Lewis-Manning Hospice

Dorset Macmillan Advocacy’s Local Cancer Champions Board was pleased to be invited to hold their recent meeting at the Lewis-Manning Hospice.  Sue Higgins, Director of Nursing, gave board members and staff a tour of the facilities. Peer volunteer advocates could potentially support people affected by cancer to visit this and other hospices to enable them to make informed choices about their future care.  Hospice staff can also inform older cancer patients about the local advocacy service should they need additional support in the community.

LCCB meet at LMHPicture L to R

Jo Lee, Senior Macmillan Advocate, Help and Care, Graham Willetts, Chair – Dorset Cancer Champions Board, Keri Harrison, Access and Community Support Manager, Help and Care, Tracy Street, Macmillan Involvement Coordinator, Macmillan Cancer Support, Kathleen Gillett, Macmillan Project Coordinator, Help and Care

Sue Higgins writes:

Lewis-Manning Hospice is situated in Lilliput, Poole and benefits from delightful views over Poole Bay.  The hospice was re-opened in 2012 following a new-build and it continues to promote the needs of patients living with a life-limiting illness. The In-Patient Unit, which will be opening during this year in a phased approach, is complemented by Day Hospice Services, Physiotherapy and a Breathlessness and Lymphoedema Clinic. The work of our multi-disciplinary team includes:

  • Widening access to supportive and palliative care services based on need not diagnosis, so that if Lewis-Manning can meet the needs of a patient with a diagnosis other than cancer, it will do so
  • Ensuring equality of access to services for all who need them. No matter who you are or where you come from
  • Treating every person and every day as special. Ensuring that each individual person knows they matter
  • Ensuring appropriate information and support is available and accessible to the Lewis-Manning Community, so as to enable a patient and carers to take control of their lives, make informed choices and manage the impact of their diagnosis and treatment
  • Providing high quality clinical and social support utilising the best of evidence based practice. By maintaining its independence Lewis-Manning is able to choose to provide the best quality and most appropriate range of supportive therapies
  • Raising awareness of what living with a life-limiting illness means, through education and provision of information to the patient, their carers and the community as a whole
  • Minimising anxiety and fear by accepting death as part of life and thereby enabling patients and their families to live in the moment and plan for their death. We use the Dorset-wide Advance Care Planning document to help patients through the many decisions
  • Providing a range of services which enable individuals to live their lives to the full. Helping to control pain, help manage symptoms and adapt to change
  • Developing, in partnership with others, high quality, holistic services in response to individual needs and aspirations, so that patients choose their own goals and Lewis-Manning works with others within the community to deliver them

Lewis Manning Hospice Logo

To support this work a large number of volunteers help in a variety of ways at Lewis-Manning Hospice.  Some are volunteer drivers, some help patients during their Day Hospice or Clinic visit; others assist at the Art Group or Carers Group meeting.  The volunteers work alongside the multidisciplinary team comprising a doctor, nurses and physiotherapists.  Other healthcare professionals become involved when required depending on the patient’s needs throughout their time at Lewis-Manning Hospice.


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Can we think ahead while still adapting to a diagnosis?

With a limited number of volunteer advocates available the length of time that they can support any one individual inevitably has to be limited.  At the same time we wish to support people for as long as they need support but will also aim to refer them on to other local services such as befriending if and when appropriate.

One particular challenge for advocates in a partnership lasting a relatively short time is how to  assist with advance care planning.  Advocates are skilled at building the deep level of trust needed but they must follow their partner’s lead.  Jo Lee, Senior Macmillan Advocate who has joined the team here at Help and Care described advance care planning as a Pandora’s Box that some people may fear to open.   We would hope that once advance care planning is embarked upon with the support of an advocate then the fear would be much less.  We are planning in depth training for our volunteer advocates on these issues in the coming year.

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Unlike cancer, dementia is always progressive but, like cancer, people can live well with the condition for many years. The recent evaluation of a post-diagnostic support project for people with dementia in Scotland by the University of Stirling and Bournemouth University Dementia Institute commented on the difficulty in supporting people with advance care planning.  Some people ‘just did not want to think ahead’ which underlines ‘the highly sensitive nature of the topic…and the lengthy timescales require to support people to think ahead, if they do actually wish to.’  People get used to the idea of having a particular illness or condition at different rates and that affects their ability to move forward on their journey.  The same report notes ‘reluctance in thinking too far ahead while still adapting to the diagnosis’ and emphasises ‘the importance of recognising that decisions on difficult topics, particularly advance care planning, will take time and of allowing people to arrive at their own position in their own time.’

Advocacy support helps people in different ways at different times on their cancer journey.  Some people contact us for support around the time of diagnosis or for help in coming to terms with a change in their situation. They may then say that they wish to end their partnership as they aren’t yet ready to think about advance care planning.  They know that they can contact us again in their own time.


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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

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.