patient education material

My name is Verity Davis and I am a 4th year undergraduate at Edinburgh University, currently completing my honours year in Graphic Design. For my dissertation, I have been looking at the role of print material in the patient education sector of the NHS. With such a short word count, it has been necessary to look into a medical condition as a point of focus, and due to a recent collaboration with the word of mouth campaign in November 2011, I have looked at cancer in general (or head & neck cancers more specifically).

During recent stages of my research, I was advised to devise a focus group of cancer patients to interview about their experiences of patient education.

This is where I would find your advice or assistance invaluable. If you could help me to find some answers to the questions below then i would be immensely grateful and it would put the research and methodology of my dissertation in good stead for a suitable conclusion.

With kind regards,

Verity Davis
Graphic Design 4th Year

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1/ Were you given any informative material (leaflets) at the time of your diagnosis.

2/ Did you find this helpful? Why/ why not?

3/ Can you suggest any improvements to the print material you received?

4/ Is there anything you feel comfortable enough to tell me about the process of your treatment?
Original Post
I don't believe I was given any leaflets at the time of my diagnosis, though there were some leaflets around. None of the leaflets seemed to be specifically targeted at mouth cancer patients - mostly just general leaflets about radiotherapy and the services at the Royal Marsden Hospital.

I found useful leaflets on a hospital website in Bristol and particularly welcomed information about the problems with mucosa after the radiotherapy and nutrition. Luckily, I pushed for an appointment with a dietician and received some valuable help there, but I still struggled for several months after the radiotherapy to regain weight. At the time of diagnosis I wasn't given details of any support groups, because there were none for tonsil cancer and this website helped me keep going.

Any leaflets which mention about exercising your tongue during radiotherapy and easy ways to keep the calories on would be good. Again, as I'm good on the Internet, I managed to find some information, but most of the information did not come from my hospital.

Luckily for me I was able to fight my way back to health and kept my job, but this is very unusual.

Best wishes with your research


Chris
Hi Verity, My Husband was treated at the Western General Hospital in Edinburgh. After his first visit to the Oncologist,we were given 2 leaflets, which I understand were produced by the oncology unit.
1 a 2page guide "Radiotherapy to the head & neck, basically a guide to the planning visits to mould room & simulator
2 Radiotherapy to the mouth & throat area, a 7 page guide to the treatment, its side effects & what can be done to alleviate the symptoms, & what happens when treatment is finished.
Although basic, they were just what we needed, at that stage.
We were also loaned a video on the "making of the Mask", which had been made by patients & staff at the hospital. It was a bit scary initially, but we watched it together & I was able to see what my husband was to undergo, for the treatment of his Tonsil Cancer

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