Funds for community engagement for BAME communities A workshop to support applicants

WELCOME

Proposed agenda 10.30am – 10.40am Introductions and welcome 10.40am – 11am Introduction to organ donation, purpose of the scheme and workshop 11am – 11.15am Breaking down the application and judging process 11.15am - 11:30am Questions about the scheme 11.30am -1.00pm Learning from the Living Transplant Initiatives and group discussion Learning from Living Transplant Initiatives and getting communities engaged Table discussions Top tips to a good application Measuring the impact of your work 1pm – 1.15pm Questions 1.15pm -1.45pm Networking lunch and opportunity to ask questions 1.45pm Summary of questions that came up over lunch. Wrap up and close

Aims of the day Attendees understand: the challenge and current context the application and judging process Share ideas with others and hear learning from previous community programmes Confidence around measuring activity People leave wanting to apply for funds through the programme

Hilaria’s story https://www.youtube.com/watch?v=DKZ03XK6uCY&lis t=PLjl4wHu2TagPCFkEY4GuY8ZCZVkbzhyh9

Organ donors save lives One donor can save or transform up to nine lives by donating organs Black, Asian and minority ethnic patients over- represented on transplant waiting list Black and Asian patients wait longer due to a shortage of organ donors More donors from their own communities would make a huge difference

Motivations and barriers One day it could be someone I love who needs a transplant But Mistrust and fear Concerns about the process Lack of understanding about organ donation Think it’s against own faith/culture

Current situation Black and Asian people less likely to be on the NHS Organ Donor Register or to have had a conversation about organ donation Black and Asian people less likely to consent to organ donation going ahead But there are donors from these communities every year Need to make organ donation more visible within black, Asian and minority ethnic communities In the community, by the community, for the community In 2017/18, of those providing their ethnicity when registering on the NHS Organ Donor Register, 3.3% were Asian, 1% were black and 2% were mixed race In 2017/18: 114 of the 1,574 deceased organ donors were from minority ethnic groups 37 people with Asian heritage donated organs after their death (2.4% of overall UK deceased donors) 25 black people donated organs after their death (1.6% of overall UK deceased donors)  24 people of mixed heritage donated organs after their death (1.5% of overall UK deceased donors) The remaining BAME donors were Chinese/East Asian or reported as other In 2017/18 there were 133 living organ donors from black, Asian or minority ethnic communities (13% of all living donors) In around 5% of cases where we have the faith of the potential donor recorded and a family refuses donation going ahead, we have recorded the family feeling it was against their religious or cultural beliefs as the main reason for refusal

What is the scheme? £115k fund for England £20k fund for Wales BAME community/faith based organisations Focus on deceased organ donation Two options: Funds up to £2,499 Funds £2,500 and above Work must be completed by June 2019

Application process Different application form depending on amount of money in the bid Looking for clear applications that enable the judging panel to assess against the five criteria Criteria: How the activity will make a positive impact Understanding of audience, local community and issues Ability and experience of previous community activation work for organ donation or something similar Ability to evaluate the impact of investment Whether the project delivers value for money Need to score at least 3 out of 4 on criteria 1 and 5 and at least 2 on the other 3 criteria Minimum score to be fundable is 637.5 out of 1000 points

How will applications be assessed Judging panel (10 – 15 members) No conflicts of interest < £2,499 will be assessed by the NHS Blood and Transplant Organ Donation Marketing and ratified by judging panel £2,500 > More than 20 applications = pre-sift based on Criteria 1 and 5 Less than 20 applications = reviewed by judging panel May be asked to come into present 31 October 2018

Presentation to judging panel The applicants asked to present are likely to be those for higher values of money, where it is felt that more exploration of the project is needed in order to accurately score it. Or where there are projects looking to achieve similar things within a similar area or target audience and more exploration is needed to compare them. 10-minute presentation covering: Objectives Audience Strategy Tactics Timings Costs Evaluation 10 minutes for questions. We will endeavour to accommodate presentations over the phone.

Learnings from Living Transplant Initiative and group discussion

Community Investment Scheme workshop 13 September 2018 Kirit Modi Hon President, NBTA kiritmodi1@hotmail.com

Background to Living Transplant Initiative Increase living kidney transplants from BAME communities Funded by NHSBT; managed by NBTA Sept 2016-March 2018; now to March 2019: £90k and £75K Bidding process: LTI Steering Group http://www.nbta-uk.org.uk/living-transplant-initiative/

Outcome from first phase Full report on 3 projects and lessons learnt BAPS Sanstha (Hindu Temple, Neasden): Hindu community, NW London Vanik Council UK: Jain community, NW London ACLT: Black community: South London Warwick University: Hindu and Sikh communities, Leicestershire (to be completed by Nov 2018. https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1837/interim-report-of-living-transplant-initiative.pdf

Learning to date Targeted community and geographical area (not South Asians in London!) Strong local community leadership (either led by community or in partnership with others): well established groups Significant voluntary effort Clear plans, timescales, outcomes, local project group, budget linked to plans, communications plan, monitoring Collaboration with local hospital, donor families/ donors, faith leaders etc.

Learning to date LTI Steering Group: key to success 3 monthly monitoring (progress against plan and budget) Practical support from SG members (advice, contacts, speak at events, regular phone contact) Innovative work: be prepared to face challenges, resilience

Outcomes New resources: leaflets and videos on living kidney donation from Hindu, Jain and Black perspective. Checked by NHSBT: available freely from NBTA and NHSBT websites Key targets for LTI Number of people who express an interest in living donation after education: 40. Achieved 151 Number of people who start an assessment process as a potential living donor: 25.Achieved 13 Number of people who donate a living kidney: 10. Achieved 3.

Current projects Four from above South Asian Health Action: Hindu and Sikh communities in Leicestershire Bidding round for “smaller projects”: £3k maximum

3 Successful Projects Leeds Teaching Hospital: Pakistani community in West Yorkshire Birmingham University Hospital: South Asian and Black patients who require or who are close to requiring a living kidney transplant at QE II and Heartlands hospitals. Guys and St Thomas Hospital and GOLD: Black patients and their families through home-based education using volunteer peer educators.

Top tips for applicants The idea Be clear on your objectives and how you will measure whether you achieved them Demonstrate that you know your audience Develop your strategic and tactics. Set realistic timeframes Carefully consider how much you are applying for – projects need to be completed by end June 2019 Keep the scoring criteria in mind – make sure you have covered the key areas

Setting SMART objectives Specific – state exactly what you’re going to do (eg get people from the Asian community in Leicester to register as organ donors) Measurable – be able to measure in numbers (eg get 100 people from the Asian community in Leicester to register as an organ donor) Achievable - ambitious but grounded in reality (eg encourage 100 people from the Asian community in Leicester to register as an organ donor by organising 4 events and distributing 500 leaflets) Realistic – with your resource and funding (eg encourage 100 people from the Asian community in Leicester to register as an organ donor by talking to the community at events about their myths and barriers and why we need to increase support for organ donation) Time bound – set a deadline (eg By March 2019 encourage 100 people from the Asian community in Leicester to register as an organ donor by talking to the community at events about their myths and barriers and why we need to increase support for organ donation)

Measuring community-based organ donation activity Inputs (spend, what you did, planning and content creation, number of events etc) Outputs (How many people did you reach – face to face and online. What proportion of target audience reached eg 1000 Asian people live in x we spoke to 70% of them) Outtakes (audience experiences eg have they learnt more about organ donation? Has their view changed? Outcomes stated: what does the audience say it is going to do actual: what has the audience done as a result of the activity eg sign up to NHS Organ Donor Register, talked to family etc) Cost per action taken

Measuring sign ups to the ODR Tracking in links to website to measure no of sign ups through digital activity. Campaign code = number of new registrations allocated to activity Ethnicity and faith not linked to an individual’s registration However, see ethnic breakdown of registrants where a campaign code is used (if people register more than once using the code it would be counted more than once)

Measuring change in knowledge, attitudes, stated behaviour Post event surveys Agreement or not with statements

QUESTIONS?