I am working with Andrew Wilson Webb of RCF, and other members of Cancer 52 (a coalition of rare cancer groups in UK), to help bring forward the RCF's audit on patients experiences of diagnosis (in England only) over the last 5 years.
If you would like to volunteer and share your experience this will help The Rarer Cancer Forum to collect data for a report that will be submitted to the DH on rare cancer diagnosis over the last 5 years at primary (GP) level in England.
You can read the briefing notes and copy the data collection form from the post under 'Newswire'... March 30th.
The timeline for this is rather tight, but if you can help it will be much appreciated.
Sandy
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Please read the following letter from Andrew:
Dear RCF supporter,
We are hoping that volunteers with rarer cancers will be able to help us collect information about the process of diagnosis at GP level for people with rarer cancers. The aim of the project is to improve the diagnosis of rarer cancers and so help improve outcomes. Patients will need to ask their GP practice for access to their medical records and then use the attached data collection form to extract the information. The findings will be anonymised and written up in a report for the Department of Health. You will find more information about the project in the attached briefing notes.
Please note that:
o We are interested in collecting data on patients with a rarer cancer who attended a GP practice at any time in the last five years i.e. from 7th November 2003 to 6th November 2008 inclusive;
o This project only relates to patients who attended a GP practice in England.
o We are happy to reimburse reasonable travel expenses and the receipts should be included with the completed forms.
Please let me know if you think you can help us with this. If you can, it would be good if we could have the completed forms back in three to six weeks' time. However, we realise a lot depends on how long it takes for you to gain access to your medical records. It would be useful for us if you could keep a brief record of the process you go through in gaining access to your medical records.
If you have any queries please do not hesitate to contact us.
Yours sincerely
Andrew Wilson Webb
Chief Executive Officer
RARER CANCERS FORUM
Registered Charity no.
www.rarercancers.org.uk