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

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

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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December 3rd is International Day of Disabled People

Our colleagues at Dorset Advocacy provided the following story:

Lorenzo lives in Poole. He has a progressive illness, Friedreich’s Ataxia, and uses an electric wheelchair.  He had been recommended a specialist exercise machine by his consultant, to help keep up his strength, improve fitness and reduce muscle wastage. However the total cost of nearly £4,500 was too much; it couldn’t be funded by the NHS and it was too costly for him to buy or rent.

Lorenzo came to Dorset Advocacy and volunteer Astrid  became his advocate. After discussing with Lorenzo what he would like to happen it was agreed that Astrid would contact the Ataxia Society to see if they could fund the equipment. The Ataxia Society agreed to send a grant pack.

Astrid then helped Lorenzo complete the application form and spoke up for him, contacting the relevant medical professionals to obtain evidence as to Lorenzo’s condition and  why the machine was vital to him. Astrid and Lorenzo then co-ordinated all the supporting evidence.

Lorenzo and Astrid

After years of waiting and hoping for the exercise machine, Lorenzo was finally granted the funds to buy one. And this was all within six weeks of meeting his advocate!

So now Lorenzo uses the machine for about 45 minutes each day. He cycles the equivalent of 10km a day.  As Lorenzo gets fitter he can increase the time he uses it and also set it to manual so his legs and arms work for themselves.

Lorenzo told Astrid that he feels a lot better and as he exercises daily he feels tired and sleeps better. He is taking less medication as he doesn’t need this to relax his muscles and his legs are less swollen as the result of exercising.  He says ‘You’ve done the best for me and helped me a lot’.  

Advocacy support can make a real difference in real people’s lives regardless of their age, disability, or anything else used to define them.

Our thanks to Lorenzo, Astrid and Dorset Advocacy for allowing us to publish this story on what is International Day of Disabled People.