Older People Living with Cancer

Peer advocates supporting older people affected by cancer


1 Comment

Do we expect too much of our doctors?

Today, Dorset Macmillan Advocacy‘s Coordinator Jen Rimmer considers patient – Doctor communication and how advocacy might help:

Working as a cancer advocates, we witness the communication between patients and their doctors all the time. When that goes well, the outcome is good for everyone involved; but when it doesn’t the effects can be truly distressing.

In her lecture ‘The Right Stuff: How Do We Make Moral Choices? Professor Gwen Adshead of Gresham College attempts to examine a central issue in patient doctor communication and it made for interesting listening.

Professor Adshead asks her audience to consider that doctors must consider not only what CAN be but also what SHOULD be done when making decisions about treatment. Previously a good clinical decision was equated with a good ethical one but this is no longer the case.

From a purely clinical perspective the path ahead can seem obvious– she gives the example of a heart failing due to lack of blood – but the complexities of the patient’s own unique personal and social values that inform their wishes should be considered. Things get even more complex when considering the more emotionally challenging aspects of healthcare (i.e. end of life care, decisions to refuse or discontinue treatment) or where an individual’s capacity is compromised.

Gwen Adshead

Although philosophy is taught at medical schools to support our doctors to make the inevitable ethical or moral decisions they will face, Adshead reports that one of the most common complaints aimed at medics is still “that they do not listen to the lived experience of ‘the patient’, or let the patient’s ‘voice’ be present and important”.

But it is reasonable to expect our doctors to be confident to make well informed, ethical decisions in every case? She asks, “whether it is just and fair to expect a group of people who are chosen for cognitive intelligence and intellectual skills in exam passing to become morally superior individuals?”

Is this where advocacy can offer most value? Helping the patient’s voice to be heard also has the secondary effect of supporting the doctor in their clinical role.

Advocates spend time with their partners and gain an understanding of that person beyond their illness. Can we expect a doctor to be able to glean and process enough information to make the best ethical decision for that individual within the 4 walls of their consulting room?

Adshead describes how a person’s decision making processes are affected by the past, the present dilemma and even their views and beliefs about the future. Often this is not obvious to an onlooker or even to the person themselves. Having an independent advocate can help unpick some of this complexity. Discussions take place in a neutral space allowing freedom to explore thoughts and feelings and work out what is right for them.

No matter what our life experience, there will be situations where we find ourselves in uncharted territory and struggling to navigate. As Adshead states, “vulnerability and neediness are not indicators of low status or even disability; they are aspects of a person’s identity that are part of the human transactions that are essential to social life.”

Advocacy recognises this and can offer the support to gain the best outcomes for all involved.

Dr Gwen Adshead is Visiting Gresham Professor of Psychiatry and currently consultant forensic psychiatrist at Ravenswood House. Prior to this post, she worked at Broadmoor Hospital from 1996, first as Consultant Forensic Psychiatrist, and then as a Consultant in Forensic Psychotherapy.

This lecture is part of a series The Right Stuff: Ethics and Moral Psychology and is available online here: https://www.gresham.ac.uk/lectures-and-events/the-right-stuff-how-do-we-make-moral-choices

Jen Rimmer, Dorset Macmillan Advocacy


Leave a comment

Learning more about independent advocacy in Northumberland

In today’s blog post we hear from Karen Renner, volunteer coordinator at AgeUK Northumberland about a recent advocacy learning and development opportunity for volunteers and staff:

On the 28th February Age UK Northumberland hosted an advocacy training day which was funded as the result of a successful Macmillan Learning and Development Grant application.

The Cancer, Older People and Advocacy Project in Northumberland  was set up by Macmillan Cancer Support and Age UK Northumberland to provide one-to-one support, help and information for people over 50 and their families affected by cancer.  The programme is only available in certain parts of the country and Northumberland is fortunate to be one of these areas.

Val Ford leads the training session

Current and new cancer advocacy volunteers attended the training day as well as Age UK Northumberland staff.  Val Ford, Director of Training from SEAP which is one of the leading UK advocacy agencies delivered the training.  Val who was involved in both writing the original training package for the project and delivering it nationwide to front line Macmillan staff proved an excellent facilitator.

The course provided an understanding and awareness of what Independent Advocacy is and highlighted the principles which underpin good practice in advocacy.  Some of the challenges that can arise with Independent Advocacy were examined and the strategies that could be used to resolve these. 

A number of group activities supported the learning process including several case studies which also examined the various issues faced by older people needing advocacy assistance. 

Discussion over exploring professional boundaries proved of particular interest to both existing and new volunteers.  The dangers of not adhering to boundaries were examined as well as strategies to employ should a boundary be broken.

After a very thorough and engaging day, all those present felt that their knowledge of advocacy had increased.  New volunteers felt they were better equipped with both the knowledge to pursue an advocacy role and the skills to maintain an independent and client led relationship.  Those people already familiar with the project found the day both motivating and a useful reflection on what they had already learnt to date.

Looking to the future, the project in Northumberland continues to gather impetus.  With continued investment in the training of our outstanding volunteer workforce, older people diagnosed with cancer will have the understanding and support needed to make the decisions that will guide them through their journey.

Karen Renner, Volunteer Coordinator


Leave a comment

Be Bold for Change on International Women’s Day

Today is International Women’s Day and the campaign theme is Be Bold for Change.  Big Lottery Fund are speaking to women who have made a big change in their lives and their communities.  Our volunteer peer advocates make a tremendous contribution, choosing to give their time to support their peers because they know that they can use their personal experience of cancer to make a difference to other older people’s lives.

 

Today we’re focusing attention on Claire’s Story, from our recent publication Time: Our Gift to You, which features volunteer peer advocates talking about why they volunteer, and what they themselves gain from their volunteering experience.  Claire has used her own experience of breast cancer to support Sally, her advocacy partner who has the same diagnosis.

Claire’s volunteering story:

“Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

One of the older people affected by cancer that I’ve supported is Sally (not her real name). She was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Sally lives alone, struggles to get out and had become very isolated and depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

In the first few weeks when I visited Sally at her home, we often would just talk and share experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

Since then, I have been able to help Sally in a number of ways. For example, I contacted Breast Cancer Care, I knew how good they were from my own experience, and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Sally suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Sally had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the Macmillan Cancer Support website. Sally doesn’t have a computer or access to the internet. I took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.

Most recently I was able to help Sally with her application for a one-off Macmillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her and I could use my experience to help with the spellings of all the drugs she was taking! She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

I hope that I have managed to convey that working with Sally has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system and how to get support. I am really glad to be able to put my experience to good use.”

Read more about the inspirational volunteers who are being bold for change on behalf of and alongside their peers here

Marie McWilliams, OPAAL


Leave a comment

Emotional support needs are growing

What information and support needs matter most to people affected by cancer? Today Kathleen Gillett of Dorset Macmillan Advocacy, (DMA) tells us about changing needs and a greater requirement for emotional support:

Cancer Information and Support Services (CISS) are changing – at least that is the finding of a recent study of the Macmillan CISS which has involved a partnership with the Mental Health Foundation.  A workshop at last autumn’s Macmillan Professionals Conference presented the findings of research into the role of provision of information and support.  Macmillan CISS services are very varied with some operated by teams of staff and volunteers in large purpose built facilities, often on hospital sites, and others provided by a single part time worker.

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

The trend has been for people affected by cancer to be less in need of information and more in need of emotional support. A YouGov survey found that 83% of patients said that ‘being listened to’ is the most important thing.  If people are seeking more emotional support how are the CISS services reflecting this change and how are the service providers (staff and volunteers) themselves enabled to give this support without a negative impact on themselves?  Answers to these points continue to be developed by a working group of Information Managers within Macmillan.

Kathleen Gillett

Kathleen Gillett

Discussions during the workshop revealed a range of interpretations as to what constitutes emotional support and how to offer it.  A weekly coffee morning style drop in could offer low level psychological support in the view of one participant from a community palliative care team.  Ensuring that ‘all the patients have my phone number’ was seen by a nurse as being a way of providing emotional support. Another participant noted that patients with identified needs may sometimes decline a referral to psychological support because of unfamiliarity with the term and fear of the word ‘psychological’.

I made sure to explain to the participants of my discussion group the way in which peer volunteer advocacy can provide low level and ongoing emotional support. Not only can advocacy partners ventilate on occasion and be sure of being listened to but they can build a trusting relationship over time with their volunteer and know that they will not be judged as they share their worries and feelings.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


Leave a comment

The system is impossibly difficult to navigate..

Kathleen Gillett of Dorset Macmillan Advocacy (DMA) tells us about the acknowledgement that someone is needed to act as the “glue in the system”:

At the 2016 Macmillan Professionals national conference which I attended last autumn Fran Woodard, Executive Director of Policy and Impact, Macmillan Cancer Support, spoke about personal experience of cancer in her family and said that the system is impossibly difficult to navigate as treatment gets more complex and people are living with more co-morbidities.  Her welcome address was about workforce. She said there is a need for a focus on coordination, navigation and support with one person who is the ‘glue in the system’.

prof-conf-2016-logo

A new role has been trialled in some parts of the country titled Macmillan Support Worker and a number of these posts will be funded by Macmillan in Dorset over the coming year.  Support Workers will be based in hospital Trusts alongside clinical staff and there will be some flexibility for each Trust to define their role and which cancer pathways they will support.

During break time I spoke with Simon Philips, Executive Director of Strategy and Performance, Macmillan Cancer Support, about how the advocacy service might mesh with the new Support Worker roles in Dorset. I am hopeful that the Support Workers will have a remit to know about what support is available in the voluntary and community sector.  We will offer them an opportunity to meet the peer volunteer advocates and hear directly about the difference advocacy makes to older people and carers.

Simon Phillips Executive Director of Strategy and Performance MCS and Kathleen Gillett DMA

Simon Philips and Kathleen Gillett attempt a selfie

Simon asked me about volunteer retention and whether we had any problems keeping volunteers. I was glad to be able to tell him that we still have on the team several of the volunteers we recruited for our pilot phase in 2012.  The size of our volunteer team is growing every year because despite a few volunteers retiring or going on to other roles such as hospital governor the majority are staying because they are so passionately committed to their roles.  They always arrive for their informal interview with a high level of motivation but once they are trained and ‘matched’ with an adovacy partner that motivation only increases as they see the real difference they are making to people’s lives. No two advocacy partnerships are the same and so the volunteers tackle the challenges that each new case brings with great energy.  They frequently tell us of the emotional rewards that they gain from the role.

As a service we benefit enormously from retaining a team of trained peer volunteer advocates that has increasing experience. In fact at our most recent volunteer networking forum at Help and Care my colleague Jo Lee and I were completely left out of most of the discussion while new and more seasoned advocates got to grips with a case study.  Could peer volunteer advocates work closely with the new Support Workers to be ‘the glue in the system’ that Fran would like to see?

Can you see peer advocates as part of the answer? Let us know what you think.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


Leave a comment

Time: our gift to you

We’re absolutely delighted today to be launching our new book of volunteer stories from the Cancer, Older People and Advocacy Programme. Telling 19 different stories of peer advocates and cancer champions, it’s called “Time: our gift to you”.

lo-res-cover-time-our-gift-to-you

We’ve spent lots of time on this blog telling you about the difference our volunteers make to the older people affected by cancer they support. We thought it was about time we gave those volunteers an opportunity to tell their own stories.

Prior to developing this new publication our peer volunteers told us some of the reasons they’ve chosen to become involved:

“It makes a real difference to those we support. It ticks lots of boxes for me, I wanted to continue to use skill, experience & knowledge to help others, to make a positive difference to people’s lives.”

“I want to help people affected by cancer, and am happy to help people through the ‘cancer experience’. For me it’s all about putting something back, I was well cared for and I’m aware that a lot of other people are not so fortunate.”

“Because I believe I can make a real difference, I can help people practically & personally. I have a good idea of what people are going through. I can help them with their concerns or fears for the future. I enjoy being part of a team, and I enjoy the training offered to us all.”

“I feel I can relate to my advocacy partner very well due to my own experiences. I find it useful to have something in common with my partner in addition to the cancer. I am an empathetic person, a good listener and able to support others to express their concerns and worries.”

In addition to making a difference for others, Cancer, Older People and Advocacy volunteers also tell us they themselves benefit from their volunteering role.

You can read and download all 19 stories and find out why cancer advocacy volunteering is making such a difference by clicking here

Marie McWilliams, OPAAL


Leave a comment

Face to face support has the most impact

What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:

There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.

Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics.  In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.

Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more.  She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact.  She believes that the best services and support need to be local and need to understand the needs of the local population.

The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.

2 Kaths for the price of one - Kath Curley & Kathleen Gillett

Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy

Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’  This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.

The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to;  and 24% respond HNA.

I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be.  Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey.  At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy