Report composed by GSUK Trustee - Stella Turner
On 24th & 25th August eight patients from across the UK attended the tenth PAWS-GIST clinic, held at Addenbrookes Hospital in Cambridge.
For some this was the first clinic they had attended while others were 'old hands' able to provide advice and reassurance to the new comers when they met the night before for dinner.
A great opportunity to begin to get to know each other.
Patients attending ranged in age from 19 to 50 plus and the majority of the group were female. The length of time individuals had been living with PAWS-GIST varied enormously, some had been recently diagnosed while others had been patients for some time.
All came prepared with lists of questions that they wanted the panel of specialists to address.
On this occasion the panel was made up of:
- Dr Ramesh Bulusu, the clinical lead for PAWS-GIST,
- Dr Ruth Casey who is undertaking PAWS-GIST research,
- Dr Olivier Giger, pathologist and researcher,
- Professor Eamonn Maher who specialises in genetics.
The clinic was also attended by trustees of GIST Support UK who were able to provide information about the work of the charity and explain how patients and their family/friends can get involved in fund raising activities to support the clinic and further PAWS-GIST research projects.
Material designed to help raise awareness of GIST and the work of the charity (that can be used both in hospitals for newly diagnosed patients and at fund raising events) was available for patients to take away.
During the clinic each patient, together with the family and friends who accompanied them, had a one-to-one consultation with the team of specialists. Everyone was given plenty of time to thoroughly explore the personal issues and concerns relevant to each individual set of circumstances. Following each consultation blood samples, which are vital to the PAWS-GIST research programme, were collected.
The clinic also provided an opportunity for patients to share their experiences informally sharing tips on ways to manage their diet and various symptoms. It seemed to be generally agreed that Farley’s Rusks are invaluable for those with a “compromised gut” while others extolled the virtues of Stornoway Black Pudding for patients trying to increase the amount of iron in their diets!
Feedback from all who attended the clinic has been extremely positive:
"We all found it really helpful and it was good to talk to others going through the same thing as us"
“I very much enjoyed my time at the PAWS-GIST clinic and meeting everyone. We all came away having had a very positive experience”.
“I just wanted to contribute something to the PAWS-GIST clinic on Friday. It really was an inspiring day”.
PAWS-GIST patients wishing to attend the next clinic in December 2017 should apply via the registration page on this site