Date: 26th March 2010
Venue: PGI, Chandigarh
The Friends of Max CML and GIST patient group meeting was held almost after a gap of two years in PGI, Chandigarh. This was rather a long awaited meeting, the reason being that it is not only the patients but the doctors and ancillary hospital staff also look forward eagerly for this meeting.
CML patients form the largest group (more than 1000 patients) in the adult hematology OPD of Nehru Hospital of PGI, Chandigarh. The clinic is run by a team of doctors consisting of Prof. Subhash Varma, Prof. Savita Kumari, Prof. Sanjay Jain, Dr. Pankaj Malhotra and Dr. Vikas Suri. The hematology OPD starts at 9 in the morning and runs till 7 in the evening. In a routine OPD, a CML patient hardly gets five minutes to discuss his or her problems with the doctor. The patient group meeting thus gives an opportunity to both patients and doctors to interact with each other and discuss issues not only related to the disease but also on various aspects related to day to day life.
This time the CML group meeting was held in the new OPD block of PGI on 26th March and moreover this time the meeting was organized by the FOM patient group themselves. The meeting brought together patients from Punjab, Haryana, Jammu & Kashmir, Rajasthan, Uttar Pradesh and Uttaranchal. More than 400 patients and their care givers attended this meeting. As the registration process began a delicious breakfast was also served during which old patients greeted each other and new patients and families were introduced to each other by the core group volunteers.
The meeting started with the “Art Therapy Session” where many patients and their care givers portrayed their inner feelings in the form of putting pencils and colours to paper and drawing pictures etc. This idea was a hit and conducted by Viji Venkatesh who took the participants through a discussion on the power of colours and illustrations to facilitate expression of even the innermost of feelings. Through an interactive session the most common feelings experienced by patients were identified as also the colours that represented each of them . There was excitement in the air as each participant took upon himself or herself to portray their very own feelings with the colours chosen. Soon any available space was covered with paper and crayons and colour pencils The Max Foundation team had brought. Dr. Anuradha who is a medical social worker of the hospital supervised this session. After this session, patient interaction program was initiated by none other than ever charming Ms Viji Venkatesh. This time Ms Sharon who is equally fascinating was accompanying Ms Viji for the first time to a meeting in Chandigarh. Ms Viji discussed in detail matters related to the availability of medicines, compliance of medication, how this program was initiated, how it has changed recently and the future responsibilities of all concerned. Ms Sharon who is looking after the patients belonging to northern region of India discussed about the ways how patients can get access to the medication early without much hassle. This was followed by a question answers session where a panel of doctors comprising Prof. Subhash Varma, Dr. Pankaj Malhotra, Prof. Neelam Varma, Dr. Vikas Suri, Dr. Reena Das, Dr. Amita Trehan, Dr. Deepak Bansal, Dr. Jasmina, Dr. Manu Updesh answered questions posed by patients about their disease, side effects and other health related issues. The session went for more than 2 hours and it was an instant hit. The patients were also told about the concession which is available at Railways and Punjab and Haryana Roadways buses to travel from their home town to their centre of treatment.
The day’s programme concluded with a delicious lunch with patients, care givers , doctors and staff of PGI and the Friends of Max volunteer leaders and the Max Foundation team all sharing their happiness at such a wonderful gathering.
CML is one of the commonest adult leukemia in India and more than 12600 patients from all over India get Glivec free of cost from Novartis through GIPAP / NOA program. The All India Patient Group Meeting (Friends of Max) which is held every year in a metropolitan city will be held in Chennai later this year. An invitation was given to all patients to attend this meeting. The meeting concluded with a vote of thanks to patient volunteers Sh. Kuldeep Goel, Sh. Budhiraja, Ms Meera, Mr. Aashish and Mr. Kuldeep (from Novartis) and Mr. Jatinder, Research officer from the dept. of Internal Medicine.
Reported by Dr Pankaj Malhotra, Associate Professor , PGI MER