Tuesday 16th December 2014
Mac Voice, the magazine for Macmillan professionals: Winter 2014
Kath Curley (pictured above) and Kath Parson (pictured below) explain how the Older People’s Advocacy Alliance (OPAAL UK) and Macmillan have been piloting peer support programmes for older people affected by cancer
No one should face cancer alone.
These words are at the heart of the Advocacy for Older People Affected by Cancer project. In 2011, the Older People’s Advocacy Alliance (OPAAL UK) and Macmillan began collaborating on a groundbreaking support project for older people affected by cancer. Its aim was to explore whether having an advocate would help older people cope better with the effects cancer has on their lives, as well as enabling them to access all the health and social care services they need.
Advocacy supports and enables people who have difficulty representing their interests, to exercise their rights, express their views, explore and make informed choices.
Older people in the main are unconcerned about definitions and simply need support. Peer advocates provide whatever support the older person needs. They aim to be the ‘voice’ of the older person, are non-judgemental, and make sure those they support are heard and their views and opinions are acted upon.
In 2012, OPAAL UK secured funding from the Big Lottery Silver Dreams programme and Macmillan to deliver a national pilot over 18 months. One of the five pilot sites was the Beth Johnson Foundation in Stoke on Trent, which has a long history of providing advocacy and of working with volunteers. The pilot project aimed to recruit and train people aged fifty or above who themselves had been touched by cancer, to provide support to their peers.
The national picture
The pilot phase was so successful that in November 2013, OPAAL UK were invited by the Silver Dreams Team to submit a bid to upscale the work to other areas across England. The bid was successful and, with further funding from Macmillan, the project has expanded across England and Wales. The cancer advocacy projects continue to increase across the UK and the vision is that this service should be available to every older person affected by cancer. There are around 1.3 million people aged 65 or above living with cancer in the UK, indicating a possible great demand for this service.
The Staffordshire story
During the final months of the pilot at the Beth Johnson Foundation in North Staffordshire, the Project Coordinator met with the Macmillan Development Manager for Staffordshire and Wolverhampton, Marika Hills, who encouraged the organisation to submit a bid to the region for further funding.
The bid proposed a hub and spoke model, based on the pilot, to cover the whole county over the next three years, with a volunteer coordinator in each locality. The Volunteer Co-ordinators are responsible for promoting the project in each area, in order to acquire referrals and to attract people to become volunteer advocates. Initial induction and training is provided and the volunteer advocates are offered regular supervision and group peer support with an ongoing training programme. This bid was also successful and Kath Curley took up the post of Project Lead in February 2014. The advocacy service is now being offered across North, Mid and South Staffs, with the fourth Volunteer Co-ordinator due to be in post in January 2015 to cover the east of the county. Each locality will have a local cancer champions group whose main purpose is to bring together various ‘expert representatives’ to champion the project, help with promotion and advertising and advise on the general direction of the local project. The local cancer champions groups are able to share the learning and outcomes of the project among the widest group of beneficiaries at local, regional and national levels.
The issues addressed by the advocates have been wide-ranging. One client was discharged from hospital, following an operation for lung cancer, to the YMCA to stay with his sons. The advocate supported him to apply for sheltered accommodation with a local housing association and to apply for the benefit Personal Independence Payment. He moved into a bungalow, but is still going through the benefits process 14 months and 52 phone calls later. He has told the advocate:
‘I don’t think I’d be here if I didn’t have the support, as I didn’t have the fight or the will.’
Susan was diagnosed with terminal lung cancer. She lived with her son, who has Attention Deficit Hyperactivity Disorder, and was supported by her estranged husband Bob. Previously when their marriage had ended, Susan had changed the tenancy agreement on their house into her name only. By law this cannot be changed again and Susan was worried about her son’s future when she passed away. The advocate worked with the housing officer to make sure all the paperwork was complete. This meant when Susan died, the tenancy changed into Bob’s name so he could move back in and take care of Charlie. The advocacy service is now supporting Bob, who has his own mental health problems, to apply for housing and council tax benefits, child benefit and child tax credits, and to become the legal guardian of Charlie. ‘The service is fantastic,’ says Bob, ‘and the things organised have been second to none. I don’t know how I would have coped if it wasn’t for you.'
OPAAL UK and Macmillan have compiled a book of advocacy stories from the project entitled Every Step of the Way.
Staffordshire Cancer Advocacy Project Lead
Beth Johnson Foundation
Chief Executive Officer