Barrie attended one of our Cancer, Older People and Advocacy project workshops at the recent Macmillan Cancer Voices Conference. Here he tells his story, gives us all food for thought and certainly impresses on us why advocacy support is and can be so vital:
I am a 68 year old man I live on my own In 2006 I was diagnosed with Stage 4 throat cancer this entailed having my voice box removed and radio therapy for a few weeks I no longer speak through my mouth but through my throat, using a plastic valve inserted in Larynx It is very difficult and sometimes impossible to use a phone. I was told there were benefits available for me. Sitting in council offices was bad and a waste of time. The staff treated me, due to my ‘strange voice’ as retarded. I had an IQ of 146 I ended up with a lot of throat infection. In those early days I wish I had had Advocacy help and new patients have the same problem. I was told by a Citizens Advice Bureau advisor that help was still available and for me to give them a ring, I call this the circle of confusion Now I don’t ask anyone for help, If I cannot deal with it myself or through the computer I don’t bother. But others need help. Barrie
Kathleen Gillett from project partner Dorset Macmillan Advocacy and I recently presented workshops at Macmillan’s Cancer Voices Conference. During the workshops looking at our Cancer, Older People and Advocacy project we had the pleasure of the company of 21 people affected in some way by cancer. Most of them were older people, many diagnosed with cancer.
We introduced the project, explained about peer advocacy and told everyone where the service is currently available. We also talked about working in partnership with Macmillan Cancer Support and how we’d both like to see a future where every older person affected by cancer who needs peer advocacy support can get it.
Jo Coulson. Staffordshire Peer Advocacy Project on left with Kathleen Gillett of Dorset Macmillan Advocacy
Near the end of the workshops we asked those in attendance about where they thought advocacy support might have been or would be useful in the cancer journey and here are some of the responses:
When given a diagnosis of a short time.
To support person in their decision where to be if not want to go to hospice or hospital.
At diagnosis and contact before the service kicks in.
When I left hospital after surgery.
As someone who has vocal problems, sometimes having someone to speak up for us can be very helpful.
Someone to be with – a friend.
Explain what is happening and treatment.
One to one talk important.
Support after end of treatment – say a couple of months after.
To find out information about treatments.
Getting doctors and hospitals to provide the best available treatment, getting doctors to prescribe the most appropriate drug treatments, having someone to be there during chemotherapy.
She died so close after her diagnosis there was even more reason for her to have someone outside of the family to perhaps support her!
Since my grandfather’s diagnosis he has had little input. We as his family have been his advocates but it would be helpful if he was able to speak to someone one-to-one so he can have a say.
When my grandmother was diagnosed with stomach cancer there was no advocate to support her and speak about thoughts she probably didn’t want to share with her family.
Finding a local support group.
Help to research alternative surgery.
Signposting to the right advice about benefits and finances.
Support when the patient’s choice is not what the family wants.
There are so many times and places that a peer advocate’s support could be helpful. It’s one of the main reasons we’re proud to be further developing this work. Every peer advocate our delivery partners recruit, train and support leads to even more older people affected by cancer benefiting. Join us in the call to make this service available to every older person affected by cancer who needs it, no matter their circumstances or where they live.
Kathleen Gillett from Dorset Cancer Advocacy and I were at Macmillan’s Cancer Voices Conference over the weekend. Cancer Voices is the name Macmillan gives to the many people affected by cancer who become involved with Macmillan in giving something back; they’re trying to improve cancer care for others.
Kathleen and I presented a couple of workshops on Saturday morning, telling people about the Cancer, Older People and Advocacy project and were delighted with the response we got. Those who’ve been affected by cancer themselves totally “get it”; they understand why having an advocate can make such a difference. For us though it was as much about listening to the personal experiences of those we met and learning from them. We were humbled and inspired by those we talked to and we’d like to extend a very warm welcome to all of our new blog followers who signed up during the workshops.
As we approach the next stage in what has been until now a pilot project and seek to expand the provision of independent advocacy for older people affected by cancer and recruit more peer advocates we need to ensure we’re listening to the voices that matter most. Our future plans include making short films of real life stories which we hope will have the impact that us just talking about our work can never have. We’re especially keen to show these films to health professionals to encourage them to refer to our cancer advocacy services and to the new Clinical Commissioning Groups to encourage them to support local cancer advocacy provision in the best way possible, with the colour of their money.