Older People Living with Cancer

Peer advocates supporting older people affected by cancer

‘Listen’, ‘partnership’, ‘empower’, ‘share’, ‘recognise’, ‘respect’

These are terms that we are used to seeing in the context of independent advocacy support.  I have in fact picked them out of the revised Code from regulator, the Nursing and Midwifery Council (NMC). Although my own background is not in health I was familiar with the previous Code from 2008. Section 4 of that version states ‘You must act as an advocate for those in your care, helping them to access relevant health and social care, information and support’. At Dorset Macmillan Advocacy as part of the training for our volunteer advocates we had discussed how this might make health professionals more open to the support that we can offer but how it might also lead to them seeing it as unnecessary since they already act as advocates for their patients.

The revised Code has widened this aspect considerably and now says: ‘Make sure that people’s physical, social and psychological needs are assessed and responded to. To achieve this, you must: … act in partnership with those receiving care, helping them to access relevant health and social care information and support when they need it, and act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care.’ The NMC says that the Code has been written with the input of many patients, carers, nurses and midwives. It is shaped around four statements, which state that good nurses and midwives will:

  • Prioritise people • Practise effectively • Preserve safety, and • Promote professionalism and trust.

Jackie Smith, NMC Chief Executive and Registrar, said on 31st March: “This is a landmark day for every nurse and midwife in the UK, and for the people they care for. The Code is fundamental to protecting the public. It sets out what patients want from nurses and midwives, and puts public expectations at the centre of professional practice.” Macmillan Cancer Support have noted that ‘The changes to the code include new sections that outline professional duty of candour, and the responsibilities of all nurses and midwives to raise concerns. The focus of the revision is to drive continuous improvements in the quality and safety of care.’

I asked one of our own volunteer advocates with a unique perspective, since she is also a practising nurse, whether she felt that the revised Code would make it easier for our peer volunteer advocates to work with health professionals in supporting their advocacy partners. She said “The new Code will bring benefits regarding better communication between health staff and advocates. We now have the professional duty to facilitate communications among everyone that is taking care of a person. The new code has underlined even more the centrality of the patient, which means ‘do the best for them’, and implies cooperation among all their carers.  Another important point that for me from the advocacy perspective is that nurses have to delegate to whomever can do the best for the patient and can complete the task at the required standard, even if they are not a health worker.”

I really recommend reading the revised Code to get an insight into what the NMC has found to be the most important aspects of patient and public expectation. The Code is extremely readable and well-constructed.  We will be referring to it in our volunteer training. Indeed many of the requirements of nurses would be transferable to the role of independent advocate especially those concerning clear communication: ‘use terms that people …can understand, use a range of verbal and non-verbal communication methods…check people’s understanding’.

Most importantly for me the Code recognises for the first time that a patient may be supported by an advocate and mentions the role directly in the third section entitled Preserve Safety. ‘Be open and candid with all service users about all aspects of care and treatment, including when any mistakes or harm have taken place.  To achieve this, you must… explain fully and promptly what has happened, including the likely effects, and apologise to the person affected and, where appropriate, their advocate, family or carers.’ I feel that the revised Code will serve as a strong foundation for effective cooperation between peer volunteer advocates, their advocacy partners – the older people affected by cancer, and the clinicians delivering their treatment and care.

Kathleen Gillett, Dorset Macmillan Advocacy


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Every Step of the Way

Tuesday 25th March sees the launch of our new project publication “Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer.

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Funded by our partner Macmillan Cancer Support, Every Step of the Way features the stories of 13 older people who have been supported by their peer advocates along the cancer journey. The stories are moving and help explain the significant difference being supported by someone close to you in age and experience, who themselves have been touched by cancer, make to everyday life.


Every Step of the Way is FREE as we wish to expand awareness of our work supporting older people affected by cancer. From 25th March a pdf copy will be available via this blog site but if you would like a hard copy please send £5 to cover administration, postage and packaging to OPAAL (UK), c/o 14 The Green, Handsacre, Rugeley, Staffs, WS15 4DP. Cheques should be made payable to OPAAL (UK)


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A message from Knowsley

Knowsley Pensioners Advocacy and Information Service (KPAIS) are pleased to have been part of the OPAAL preparation for the Silver Dreams Flagship Fund.  It’s been really useful learning about the services of other organisations across the country.

So much dedicated work has gone into this bid from Kath and Marie at OPAAL, their current partners, new partners and of course the wonderful support from Macmillan.

KPAIS have worked with older people in Knowsley for 15 years delivering advocacy, welfare rights advice and reputable tradespeople.  Some of our clients have been affected by cancer and we have witnessed how, very often, this has an impact on people trying to deal with day-to-day practicalities.


All KPAIS staff have taken part in the Macmillan online awareness training and we have made a number of local contacts in preparation to delivering this dedicated project in 2014 such as the Cancer Community of Practice through Public Health.  This is a GP led initiative who are really supportive of the OPABC project;  so important for building up referral networks. Our cancer information library is available for any drop-in clients and will continue to grow as we continue to learn.

Very best of luck to OPAAL.  Hopefully this project can be rolled out as planned and can deliver advocacy support to greater numbers of older people affected by cancer.  We eagerly await the news in the spring.

Patricia McCarthy, Manager, KPAIS


My experience of being a Volunteer Advocate

What is it like – being an advocate for the Beth Johnson Cancer Advocacy Project? The first thing was finding the courage to apply, first of all I thought perhaps I was too old; secondly could I manage to drive around the Potteries when required to visit a client without worrying about it for too long? I phoned for an interview.

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I feel very strongly about helping people with cancer as I have been a victim myself so it was very comforting to have my phone call answered by a very pleasant lady – the Project Co-ordinator. She informed me about the things I would need to do before I could be accepted.

I thought at first it would be quite a daunting project even though I was a retired nurse. The people we get involved with are vulnerable with life threatening illnesses to contend with, for example, being so ill they have to give up their jobs and have no money coming in, is yet another worry for them. This I soon found out after several courses and meeting lots of very interesting people who dedicate their lives to helping these sick, vulnerable people.

Sheila Kay

Sheila Kay

Several months on I have been accepted (I think?) and enjoy going round to visit these people. Some are very nice and it makes you feel quite sad because of their suffering but it gives you a nice feeling to be able to support them and signpost them to people and organisations that can help their situation. I, myself, did not realise just how many people out there can help and I have found lots of organisations willing to help older people affected by cancer. One such person, an elderly retired gentleman, had only his pension to live on and he had retired early through illness, was finding it hard to survive. My mentor, who I went to visit this gentleman with, was very good at explaining things to him, gave him lots of information on who to contact. It was so good to see the relief on this man’s face when we came away with a promise to follow up our visit with another one and keeping in touch by phone on a weekly basis.

This week we have another meeting and workshop. I will also have another person on my list to visit and a catch up with what has been going on with the other clients.

On the whole I am really glad I applied for this project. It is good to help people and also interesting learning about life with cancer and how other people who have no-one to support them can survive.

By Sheila Kay