Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Today we hear from Emily Brown, Interim volunteer manager and independent advocate at Dorset Macmillan Advocacy:

I am new to Dorset Macmillan Advocacy service, not to Dorset Advocacy, but I am a newby on this project.  I have been blown away by the dedication given to it by staff at Help and Care and Dorset Advocacy, the members of our Cancer in Older People Development Group and of course by all of those volunteers who give their precious time and share and draw from their own experiences in order to support those that need it.  I have come at an exciting and challenging time as we strive to illustrate the benefits, positive outcomes and impact of the service on the people we support…we know the impacts because advocates see this first hand, but how do we convey its importance to others when times are tough, and how do we show that advocacy can also be a benefit to the NHS?

Jenny Purcell and Karen Piggott of Dorset Advocacy were invited to speak at the Clinical Commissioning Group’s (CCG) lung cancer pathways information day last month.  They presented to a number of professionals on the benefits and impact of advocacy.  We often talk about the benefits of advocacy for the individual which is, without doubt, the most important thing but what is not always considered are the benefits of advocacy for the service providers.

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We have recently received an independent evaluation of our service which illustrates exactly this.  Essentially what the evaluation does is highlight how the introduction of advocacy support can help to ensure that the choices that the person makes are well informed, that the individual has a consistent person throughout their journey, and that as a result the input of advocacy can help the process to move more swiftly, advocates can ensure that people can keep to their appointments and that the individual’s other concerns are being addressed allowing them to focus on decisions about treatment. 

In fact there was a recent example with one of our cases when a health professional at Dorset County Hospital postponed an appointment by a few days in order for an advocate to be able to meet their partner and attend this appointment with the patient.  This action alone indicates to me that this health professional recognised the value in having an advocate present to support at the appointment.

Our work continues with the CCG in Dorset to initiate the introduction of advocacy as a recognised standard of good practice on the lung cancer pathway. We are not there yet but the evaluation along with our Case for Support will, we hope, enable us to convey the impact of advocacy and put together a pilot scheme that can illustrate the values of the service for the service providers as well as those who receive it.

Emily Brown, Dorset Macmillan Advocacy

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Patty Doran: research and evidence to support advocacy services

Evidence of the impact of small, community-based services is often hard to convincingly portray.  We can tell stories about the people who have used our services.  These stories generally generate positive responses about how “obviously” a good service is being provided.  However, when it comes to securing on-going funding for services, more robust evidence is required.

This is the situation I was in a few years back when I was a Macmillan Information and Support Service manager of an innovative service based in Manchester’s community libraries.  We were lucky, after 3 years of Macmillan funding, I was able to secure another 3 years of funding from The Big Lottery.  My experience of running the service, and the endless task of proving its worth, spurred me on to complete a MSc in Social Change at The University of Manchester.  I enjoyed the experience of returning to study, and now I am researching full-time towards a PhD focussing on the social support needs of older cancer patients.

Through my research I have maintained contact with Macmillan and established new links with OPAAL and the Cancer, Older People and Advocacy project.  The work being carried out by the Cancer, Older People and Advocacy delivery partners directly parallels with my theories about the support needs of older cancer patients.  The stories that are shared through this blog highlight the important and valued role that the cancer advocates are playing.

Patty

Patty

I am now in the position to support the evaluation of the Cancer, Older People and Advocacy project by conducting independent research into the impact of advocates on the experiences of older cancer patients.  I am hoping to travel to several of the Cancer, Older People and Advocacy delivery services to carry out interviews with older cancer patients who have used the services, hear their stories, and draw together an analysis of the impact of advocacy.

So far, I have interviewed two people who have used the ICANN service.  Recruitment of participants for this research involves the support of the advocacy organisations involved, and I am very grateful for the support from Janet Cullingford from ICANN for her support in arranging the first two interviews.  Recruitment is dependent on the organisations’ advocates and workers, and requires negotiation and in some cases persuasion on their behalf to get participants on board.  However, the potential benefits are high.  Hearing the stories of older people affected by cancer who have used an advocacy service provides a contrast to the more common ‘expert patients’ used in many other qualitative studies.

Patty with Janet from ICANN

Patty with Janet from ICANN

Listening to the stories of older cancer patients provides important insight into personal experiences of having cancer treatment.  From these experiences we can learn about how the principals of shared decision-making are applied in treating cancer, if indeed they are.  Initial findings suggest that from the patient’s perspective there are limited decisions to be made, and health professionals are trusted and relied upon to make the treatment decisions.

Support during the cancer journey is highly appreciated, especially post-treatment.  One older person said that “without [my advocate’s] support I don’t think I would have got through it”.

However, more interviews are needed to explore these initial findings further. I am now hoping to recruit several more older cancer patients to be interviewed. For more information, contact Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester,  patty.doran@postgrad.manchester.ac.uk

Patty Doran


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A quick chat!

Recently Marie from OPAAL recorded a chat she had with Kathleen from Dorset Cancer Advocacy about how our pilot project is going from Kathleen’s perspective.

Have a listen to what Kathleen had to say by clicking below. You may need to turn the volume up to hear what was said and apologies for the background noise.

 


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Meeting our Volunteer Advocates

Between July and August this year I travelled the length and breadth of the country visiting our volunteer advocates. I was visiting our cancer support projects with the aim of evaluating the volunteer experience. We do have eternal evaluators who have been busy all summer long interviewing a wide range of project stakeholders, however I myself like to conduct some internal evaluation particularly of our volunteers, as this gives me a rare opportunity to thank them in person for the invaluable work they do supporting older people affected by cancer.

The first thing I have to say was that it was a truly humbling experience for me. I spoke with Tom, Evelyn and Anne from Gateshead; Richard, Pauline and Janet from Dorchester; Maddie, Marion and Bob from Bournemouth; Helen from Sefton and finally Pauline and Yvonne from Stoke on Trent. Without exception I was immediately struck by the genuine warmth of these people, their desire to help and offer support to others in similar situations to those in which they had found themselves earlier in their lives shone through. When I asked how they came to volunteer all had a uniquely personal and moving tale to tell. These stories mostly focussed around their experience of cancer, how this had changed their lives and how, upon coming through it they determined to make the lives of others just that bit easier by sharing what they had learned. Volunteers told me “As a cancer patient I see a real need for this project and want to help out with whatever I can do to support this work” and “I believe this project has the potential to benefit a lot of people.” “I have never felt so appreciated in voluntary work as I do here” quote one lady who had volunteered with other projects before.

Kath with volunteer advocates Bob Smith, Marion Summers and Maddy Smith

Kath with volunteer advocates Bob Smith, Marion Summers and Maddy Smith

I asked about how well the volunteers felt equipped to cope with the challenges of supporting older people affected by cancer, without exception volunteers spoke movingly of the tremendous support they receive from their advocacy supervisors stating how they really valued this personal support as it gave them opportunities to explore in depth the ways in which they could help others, and learn from others experience.

One volunteer noted that mainly as a result of the excellent training and support she has received: “I have much more awareness of cancer and its impact on older people and the wide range of services available to support OPABC”.

When describing their voluntary work one person said “It’s always interesting, sometimes challenging, always rewarding, work with lovely people, never pressured, always supported.” whilst another quoted  “I found the role of a volunteer advocate very rewarding though it is not without its challenges. “I enjoy the one to one contact and feeling useful as I’m able to offer emotional support and able to help others to look beyond their present problems”

When we spoke of our volunteers intention to continue to volunteer with the project many people gave moving accounts of why they wish to continue to offer their services, some people are even considering a change of career they have been so motivated by their volunteering experience.

“I would really like to make the move into independent advocacy work as a second career, I’ve enjoyed and benefitted from the training I’ve received and I’m very happy to undertake all other training offered in this area. I am also mindful of the fact that the more experience I get supporting others the more I will learn. I also volunteer for a local Douglas Macmillan Hospice and pick up extra skills and knowledge there.”

“I feel this project is of vital importance to the people of North Staffordshire who meet all the criteria for the services of an advocate. 

“I wish to use my experience as a nurse and cancer patient to help support other people in similar circumstances”. 

“ I retired with a purpose of doing positive things and the hope that it keeps my brain active”.

“I believe this project has the potential to benefit a lot of people.”

“As a cancer patient I see a real need for this project and want to help out with whatever I can do to support this work”

“I want to continue this role, work more with both patients and carer’s as I feel there is not enough support for carer’s sometimes I feel they have different support needs than patients” 

I should like to publically record my thanks and those of our partner organisations to our wonderful volunteers without whom we would not be able to offer the much valued advocacy support services we offer to older people affected by cancer, most of whom could not find this support from elsewhere.

My report Volunteering Voices feeds into our project evaluation which will be available to read here during November.