This document discusses the benefits of independent advocacy support for cancer patients and their caregivers. It provides quotes from patients and caregivers about the challenges of navigating cancer diagnosis, treatment, and care without support, and how an advocate helped by listening without judgment, explaining information, accompanying them to appointments, addressing issues with care, and empowering them. The advocate offers continuity, builds confidence, and helps manage both the emotional and practical difficulties of cancer. The document concludes by providing contact information for Dorset Macmillan Advocacy.

1. supporting people aged 50+
and their carers

2. Independent advocacy support
Is person-centred and led by the person affected by cancer
Is provided by trained peer volunteers
Is face to face, in the community, at home or in hospital
Is confidential and makes time to listen
Is about finding appropriate information, discussing concerns and
checking understanding to enhance patient health literacy
Is about building confidence and empowering patients and carers
Offers continuity and is based on a trusting relationship

3. Patients without advocacy support
through investigations and diagnosis said
I went for tests, I was very nervous as I hadn’t done anything by myself for
years
I was diagnosed on my 72nd
birthday – living alone isn’t a pleasant
experience when you have this sort of news
The letter said I should take someone with me… the problem is I don’t
know anyone well enough
I was diagnosed in the March and I thought – this is my last summer
No one should face ‘the void’ that I did while waiting for my results

4. Patients and carers say how they were
managing before getting advocacy
support and then how their advocate was
able to help them:

5. Making treatment and care choices
They said they needed to remove the tumour right
away – I was in a state but I went along with it in a
daze
I felt such a relief, my advocate had had cancer, I was
talking to someone who understood
I couldn’t bring myself to look at the leaflets I was
given
We went through the leaflets and together got the
picture of what might be done
I couldn’t decide if I wanted to tell my children, I was
frozen
We have a plan about telling my children, I want the
answers clear in my own head first
I couldn’t remember anything the consultant said.
My memory has begun to fail me
We put together a list of questions, he came along
with me, he took notes… and he will tell me all about
it when we get home

6. During active treatment
I’ve seen so many different people He can help to remind me who is involved in my care
After the operation they said I had lung cancer as
well… I went to pieces
I could share my feelings with her more than anyone
else
I am carer for my wife who had a stroke and now I
am in hospital. She is finding it difficult.
He is going to help my wife sort things out – that will
be a great weight of my mind. I will be able to
concentrate on getting well.
I still panic and am confused at times She is there to help me understand things

7. Living with and beyond cancer
I was angry and fed up with being in hospital He understood that I wanted to be independent, he
was outside the ‘ring of authority’, I was able to
say what I wanted
I was unhappy with the service provided by my care
agency
After talking it through we decided on a course of
action and got the issue resolved
Side effects meant I had lost the confidence to go out Now, with my advocate behind me, I am going out
more, driving and using the bus

8. Emotional and practical benefits
throughout the cancer journey
My advocate is there for me to talk about positives and negatives
My advocate was able to help me see things clearly
My advocate is looking for groups I may enjoy while I have some
time left
I have been able to express my views and wishes
I will not have to go to another appointment alone
The support I got meant that I did not give up

9. Call Dorset Macmillan Advocacy to refer:
Telephone 0300 012 0256
E mail macmillan@helpandcare.org.uk
Web dorsetmacmillanadvocacy.org
Service delivered by Dorset Advocacy and Help and Care
Part of the Cancer, Older People and Advocacy Project in partnership
with Older People’s Advocacy Alliance OPAAL UK and Macmillan
Cancer Support
Blog http://opaalcopa.org.uk/
Patient and carer quotes from Every Step of the Way publication 2013

10. Call Dorset Macmillan Advocacy to refer:
Telephone 0300 012 0256
E mail macmillan@helpandcare.org.uk
Web dorsetmacmillanadvocacy.org
Service delivered by Dorset Advocacy and Help and Care
Part of the Cancer, Older People and Advocacy Project in partnership
with Older People’s Advocacy Alliance OPAAL UK and Macmillan
Cancer Support
Blog http://opaalcopa.org.uk/
Patient and carer quotes from Every Step of the Way publication 2013