Living Organ Donation - “Give a Gift”

Final Report 2017-2019

1. Aims and objectives
So many Hindus and Jains suffer from high blood pressure and diabetes, the chances of developing kidney failure in our community is high.
The drop in the number of living kidney donations and transplants over the last few years is becoming a major concern.
Within the Jain community, organ donation, particularly with kidneys is on the decrease. Statistics provided by NHS Blood and Transplant in their 2015/16 report indicate that there were 5189 patients waiting for a kidney transplant in the UK and 944 (18%) were from Asian background. There were only 98 organ donors from the Asian community; 71 were live donors and 27 were donors after death and the numbers of donors are going down.
In view of the above, the main aim of our project which started in 2017 was to make Hindus and Jains aware of the need to donate an organ with emphasis on individuals within our community to come forward.
The Jain/Hindu community, in general, has been reluctant to come forward or openly discuss matters relating to organ donation. Our aim at inception has been to help our community come out of this shell thus help individuals and their families to better understand and endeavour to remove the fear that currently appears to exist. Our community will, as a result, be better informed and we hope this project will provide sufficient information to allow them to come forward, discuss amongst friends and families and consider donating a kidney.
2. Activities Undertaken
The following tasks were undertaken –
Leaflet: a leaflet was designed and produced to help our community answer key questions on living organ donation. Following completion of the leaflet, it was circulated to all community members on our data base (2000 plus families) and we further distributed the printed copies of the leaflets to those attending events organised by our affiliated organisations and at the events we arranged.
Diet leaflet: Vanik Council also published a leaflet titled ‘Guidance on reducing Potassium (K) content for Gujarati vegetarian diet’ - The leaflet was distributed at events that we held and is also published on our website.
Conferences: In order to raise awareness directly with our community, we arranged a number of conferences through which we could promote living organ donation. During 2017-2018 we held four events and in 2018-2019, we held conferences in Manchester, Leicester, Crawley and in North West London. During these events, we invited a GPs, Living Donor Coordinator, kidney surgeon/consultant, Dietician (targeted to vegetarians), NBTA Honorary President and community leaders. The presentations/stories from donors/recipients were followed with a Question and Answer session.
Follow-Up: Following events that were held, we arranged follow-up sessions for those members who wanted more information. Senior LDCs were invited to explain the process and answer their questions.
Videos: As part of this project, we also produced a Video for whoever was interested in donating a kidney. Our expectation was that this could be used by friends, families to generally promote living organ donation within our community. The final videos that we produced included members from NBTA/Vanik Council who provided a brief summary of the project, medical professionals who provided details on Living organ donation, interviews with recipients and donors who have been through this process and Jain leaders who gave an insight from a religious perspective. These videos were provided to NBTA and NHSBT for uploading it onto their websites. We have also uploaded it onto the Vanik Council website. In total two videos were produced, one which is around 22 minutes and a shortened version, about 5 mins. At events held during 2018-2019, the videos were also shown to those who attended.
Links to videos are detailed below.
Living Organ Donation Short
Living Organ Donation Long
3. Management
Throughout the Project, regular meetings were held to plan, review , monitor and track progress of activities that we had undertaken. Considerable effort from volunteers within Vanik Council and affiliated organisations ensured the success of both projects.
• Leaflet – The generation of the leaflet required considerable effort to ensure answers to key questions were provided. This involved research on the internet, reviewing of material that existed, interviewing people and obtaining approval for the
accuracy of the leaflet.
• Events – Arrangements of events to Promote Living Organ Donation on a large scale takes a lot of organisation including promotion to attract large numbers from our community . This is non-trivial and took considerable effort and time from many individuals. Planning the event including identifying and gathering key speakers who could provide the information takes considerable time and effort to arrange. In order to plan these events, numerous meetings and discussions took place prior to the events.
• Video – Numerous meetings were held to discuss the content of the video. As part of the video plans to interview key speakers , recipients and Donors has to be coordinated with interviews being convened at convenient times for the participants. Following completion of the video, considerable time was spent on editing the content to ensure maximum effectiveness.
• Coordination – Organising events away from London needed considerable effort particularly with monitoring and continued guidance to ensure success. There were a number of challenges that had to be overcome particularly with arrangements of speakers and scheduling of the day’s itinerary.
4. What worked well • Participation of community members to events that we organised. For one of the events that we organised, more than 250 people attended. • Awareness of the project through circulation of the leaflet to over 2000 families • Participation of key medical professionals at our events. • Participation of Donors and Recipients including heart-warming stories at our events. • Excellent Question and Answers sessions from community members at events. • Completion of feedback forms with positive results. • Positive interest in community members expressing an interest in living donation • Positive feedback on event organisation of events. • Three Kidney donations from living Donors due to our campaign. • Positive feedback from those who attended the conferences
5. Evaluation
Considerable effort and time was devoted by Vanik Council executive committee members, Volunteers, Medical professionals, Donors , Recipients and many others. In terms oif finance, the amount of budget that we spend far exceeded the budget that was allocated, however the results from the promotion and interest shown from our community has made this a vert worthwhile project to be involved with.
My KIrit Modi has been instrumental in providing us guidance and support through both projects. Vanik Council is indebted for this continued support.
6. The main challenges
• Attracting community members has been difficult, however with great determination,
we exceeded our expectations.
• Video – producing the video has consumed a lot of time and effort. In particular
interviewing all involved in the video took a lot of preparation.
• Event arrangements and preparation has taken a lot longer than envisaged.
• Schedule of events has had to be carefully organised to ensure maximum
effectiveness.
• Invitations to key speakers and confirmation to attend events was time consuming.
• Leaflet generation consumed a lot more time to ensure accuracy and also for it to be
useful for the future.
• Attendance at follow-up sessions was poor
• Individuals who showed an interest in donating at the conferences, failed to pursue.
• Difficulties in coordinating with affiliated organisations where executives from Vanik
Council are not based.
7. Summary of Conferences
Summary 2017-2019 Summary of Targets v Actuals
8. Conclusion
In summary, Vanik Council exceeded expectations on a number of fronts –
• Attendees at events exceeded expectations
• Good response in completion of feedback forms.
• Number of people who came
forward to being assessed.
• As a result of the promotion, it
was remarkable that three
members of our community
donated their kidneys
• During 2018-2019, we found at
least one person at every event
who as a result of our promotion had come forward to donate an organ, however,
could not continue due to issues with the assessment.
Venue Date Attendance
Expressing
Interest
Navant Vadil Mandal May-17 160 No Forms
Navnat Vadil Kenra Jun-17 190 26
Follow Up Sattavisgam Aug-17 15 N/A
Navnat Centre Oct-17 250 50
Follow Up Sattavisgam Dec-17 10 N/A
Follow Up Sattavisgam Feb-18 35 N/A
Sattavisgam Mar-18 100 20
Total 2017-2018 760 96
Manchester Oct-18 160 124
London Feb-19 106 39
Crawley Mar-19 150 26
Leicester Mar-19 150 34
Total 2018-2019 566 223
Total 2017-2019 1326 319
2018-2019 2017-2018
Target Actual
Number of People Interested 10-96
Number of People Assessed 5 to 6 4
Number of People Suitable 1 or 2 2
Number of Live Donation….. 2

 

Number of People Interested 45-138
Number of People Assessed 7 5
Number of People Suitable 2 or 3 
Number of Live Donation….. 1
People offering live donation but recipients
waiting for results of assessments ….. 4