Eight, then seven patients and their carers attended our April and September clinics respectively, some for the first time and a few for follow up consultations.
At the last clinic our team were joined by GIST specialists Dr Palma Dileo, Consultant Medical Oncologist, University College Hospital London and Dr Sheima Farag from The Royal Marsden, London. The welcome dinner on the evenings prior to the clinics were very enjoyable.
There was some impromptu “team building” at the start of the last dinner further to a mix up at the restaurant, necessitating our group to rearrange the dining area to fit us all in…
Each clinic follows a similar format. Patients register to attend via the PAWSGISTCLIIC.org.uk website or are referred by their local doctor. The clinic administration team work for weeks in advance to gather all the medical records and scans needed by the specialist PAWS-GIST team to review patients medical history prior to the clinic and to make arrangements for any visiting specialists attending the clinic from other centres.
On the day each patient is welcomed to the clinic and can spend as much time as they like engaging with the other patients outside of their appointments with the specialists. Every patient is unique and has as much time as they need to discuss individual circumstances and concerns before agreeing an appropriate way forward with the specialist multi-disciplinary team.
Patients consistently feedback that having time with PAWS-GIST specialists, agreeing a plan of action and meeting other PAWS-GIST patients are huge benefits gained by attending the clinic. Opportunities to meet PAWS-GIST specialists and other PAWS-GIST patients and their families are so rare and PAWS-GIST research related to the clinic is ongoing.
Our thanks go to Dr Bulusu, Dr Casey, Dr Giger, Professor Maher and everyone who is involved in organising and running the PAWS-GIST clinics.
We are accepting registrations for the next clinic which will be held in on 29th November 2019.