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Friday, 18 May 2012

Buddying people affected by cancer.

I have decided to write this post as it has been something that has been on my mind for a bit of time, and I was at a meeting last night where my thoughts and feelings were confirmed.

Since my diagnosis and significant treatment, I decided that I wanted to help other people that were going through what I was. I knew that my cancer experience alone, was not enough to be able to do that, so I went on The Macmillan Cancer Support Course, which was brilliant, and involved studying a lot of different aspects of cancer and it's affects on people. I also went on other shorter courses to give me the information that I needed.

I then started volunteering at the local cancer centre, to gain some practical experience. Also I helped at St Georges, talking to bone marrow transplant patients. I have been doing a lot of this work, for about four years, which as you know, I thoroughly enjoy. I decided to put this role on an official footing and volunteered to help The Lymphoma Association as a Telephone Buddy.Each organisation works slightly differently where buddying is concerned. The LA try and match as close as possible to the patient. ie, disease, age , sex, treatment etc.

Telephone buddying is a very different skill to face to face work. It is much more difficult when talking to someone on the phone, as you cannot see body language and reaction to your conversation. Also there can be a lot of pauses, that some people might find awkward. If you are having a face to face conversation with people, you can gauge much more easily, how receptive the patient is to you.

Everyone is aware of the need for people to talk to, and there is no better way to help understand what you are going through than by talking to someone who has experienced it. We are all in agreement, from patients,to nurses and doctors. In every hospital, there is regularly, a lot of unofficial buddying that goes on. Patients compare notes with each other, and sometimes doctors or nurses will ask one patient to talk to another, about their experience. All very logical I suggest.





You would think then, that if there was an officially trained group of volunteers (ex patients)  all CRB checked, willing to set up an official 'Buddying Service' for cancer patients and their families, that the hospitals would be thrilled? They were, everyone said how fantastic the service would be, and the volunteers were ready for their first referral, which would come from the hospital.

That referral never came! As yet, the service is still to get off the ground after nearly a year. A lot of time and effort went into training and organising, and all the volunteers had formed a very close knit group, and all wanted to give something back. Everyone is amazed that the service has not been able to start, even the nurses and doctors I talk to about it.However, most of them never even knew that the service existed until I told them.

At our group meeting last night we were joined by some guests from another area who were interested in how our group was running. They were interested that we were talking about a buddying scheme, as it was something that they wanted to do but had encountered resistance and suspicion from some professionals.

Now the big question I ask is why??? The service is no additional cost to the NHS, all run by properly trained and checked volunteers. Surely this sort of service will only raise the profile of the hospitals? Surely a free service that benefits the patients, is a no brainer??

Why is it so difficult to GIVE help to health professionals. What is so wrong with the system, that people who work in the same place don't know what is happening. We are all here for the same reason, and that is to improve the lives of people affected by cancer. Surely, we are the ones with the expertise, as we have experienced things first hand. So much experience, knowledge and enthusiasm is being wasted. Imagine the power if it were harnessed in the right way? 

I would like to finish with a little story. I was talking at a national conference last year, and I followed a professor, who spoke about cancer treatment through the ages. He was very funny and knowledgeable and his session was very interesting.My talk followed his, and was the last one of the day. As he left the stage after a huge round of support, I said to him that he had given me a massive problem in trying to live up to his speech. He said, " Chris, you are the expert in the room, you have the experience I don't have. They have all come to listen to you"! 

He was right of course, but I had never looked at it that way. We are experts, so come on guys, let us in to this exclusive team, as we can add something that you can't!!

What do you think? Please let me know how you feel




















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