We are currently putting together a series of booklets  entitled “Patient Experiences”.

As well as containing expert material from psychologists and clinicians, these booklets will contain the experiences of patients, their families and carers. We hope that by sharing these stories, we will be able to illustrate the range of different emotions that people experience at different stages of their journey with a rarer cancer. We hope that this, in turn, will offer comfort and support to the reader, and will help to make them feel that they are not alone, and that all of their feelings are natural.

The first booklet will be about DIAGNOSIS, and I am URGENTLY looking for a group of patients who would be prepared to fill in a questionnaire this week about their experiences relating to diagnosis.  There is also a questionnaire for friends and family members, who are also deeply affected by a cancer diagnosis.

All information will be treated with the utmost confidentiality. We will attach name, age and type of cancer to each patient story, but will happily change these details if required.

I’m trying to complete the first booklet by the end of January, so am up against a tight deadline. The next two booklets, which will address “Living with Cancer” and “The End of Treatment”, will be written over the coming months, and I will also be looking for patients to help me with these.

The booklets will be available as downloadable PDFs as well as hard copies, and they will be available to any individual or organisation who wishes to use them.

We’re hoping that, as well as being a source of comfort and support to patients, these booklets may also help us to raise awareness of some of the inequalities faced by rarer cancers patients.

If you would be happy to help, please contact me on 07595 068998 or maiasissons@me.com and I will send you a questionnaire. The questionnaires are also available to download below. If you click on them once, they should appear in your download folder.

I will need all completed questionnaires by 20th January.

Thank you!

Patient Questionnaire  Family Questionnaire