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A Vision for Change A Voice for the Future

A Vision for Change A Voice for the Future. Strategic Plan 2012-13 >> 2014-15 and An update on the work of the NBTA.

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A Vision for Change A Voice for the Future

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  1. A Vision for Change A Voice for the Future Strategic Plan 2012-13 >> 2014-15 and An update on the work of the NBTA

  2. People from Black, Asian and Minority Ethnic (BAME) and mixed parentage backgrounds are dying in disproportionate numbers because of the difficulties they face in trying to find an appropriately matched donor. One of the main reasons for this is not enough individuals with a similar genetic history on national registers and, even when they are, cultural and other barriers can stop transplants proceeding. Remit The remit of the NBTA , sponsored by the Department of Health, is to promote collaborative working amongst organisations promoting awareness of donation in the BAME population. It will bring together relevant partners and provide a forum for agreeing and reviewing work programmes that is as effective and efficient as possible, facilitating planned initiatives that make the most of the skills, experience and infrastructure that can support targeted and direct initiatives. Mission statement The NBTA will bring together people, passion and resources to address the barriers faced by those from a BAME genetic heritage needing a whole organ or stem cell transplant. Our goal is to save lives. We will raise awareness of inequalities, promote the importance of transplantation with the aim of increasing the number of BAME people registering as donors and consenting to donation.

  3. Membership • African Caribbean Leukaemia Trust (ACLT) • Afiya Trust • Anthony Nolan • DWIB • Department of Health • Hindu Forum of Britain • Institute for Health Research, University of Bedfordshire • Kidney Research UK • NHS Blood & Transplant • National Kidney Federation • Race Equality Foundation • The Rik Basra Campaign • Seventh Day Adventist Church • South Asian Health Foundation

  4. www.nbta-uk.org.uk

  5. Objectives: • To establish the group as the authoritative voice for BAME donation, built on a reputation for sound advice, guidance and leadership • To facilitate discussion and agree strategies to increase representation on donor registries of individuals from BAME or mixed parentage backgrounds • To provide high level coordination and advice on awareness campaigns covering the donation of stem cells and whole organs from BAME and mixed parentage populations • To facilitate better networking to support work at a local and national level • To promote the implementation of joint initiatives covering different types of donation wherever possible • Identify and support initiatives and projects that help overcome the barriers that exist in preventing the conversion of willing donor to successful transplant

  6. Outcomes: • By April 2015, it is our expectation that for BAME donation and transplant: • Significant change in attitude to donation and transplantation within BAME communities • Improved awareness of the importance of stem cell donation, helping to increase the chances of those suffering from blood cancers finding a suitable matched sample and thereby increasing transplant rates • Improved stem cell donation to ensure the percentage of donors on UK public stem cell donor registries will reflect the UK BAME demographic, as reported in the 2011 census • A strong, evidence based donation is established to help inform strategy development • A better supported, engaged and effective BAME donation campaigning force

  7. 2012-13 Establishment • NBTA will work to establish credibility as a national group and will develop a national strategy to promote BAME donation and ensure that it reflects society we represent. • Planned Action Year 1 • Establish NBTA as an authoritative and respected voice for BAME issues related to donation and transplantation • Identify individuals and groups to help us spread the message on BAME donation at a national level, especially among young adults; • Develop a communications plan to support and underpin the NBTA’s work programme and identify ways to support local campaigning and awareness raising; • Carry out a review of and make recommendations on all current data on BAME donation and transplantation that will help inform our strategy, priority setting and action to be taken; • Create an online presence for the NBTA, Start to develop an on-line, open access tool kit to support individuals and organisations wanting to raise awareness of BAME donation. • Engage and influence the NHS Commissioning Board on BAME matters related to donation and transplantation.

  8. 2013-14 Consolidation • In our second year, we will work to bring forward firm, thought through proposals to address the long term issues facing BAME donation. • Planned Action Year 2 • Publish the findings from our review of BAME donation data; • Publish our online toolkit available to all those who wish to access it; • Hold ‘One Year On’ stakeholder event called “Moving Forward Together” on 30th Sep 2013 to publish Year 1 progress and on-going Delivery Plan to increase BAME donation and transplantation rates; • Provide access to education tools and support, including peer educator programmes and donor and donation education information.

  9. 2014-15 Sustainability • Our work will concentrate on continuing to support our constituent members in their work in raising BAME donor and donation awareness. We will also monitor and promote the implementation of the BAME donor and Delivery Plan. • Planned Action Year 3 • Evaluate work to date and learn from both our successes and disappointments; • Build upon our shared experience of and knowledge gained from what went well to and use this to build better practice skills for the future; • Continue to engage with all relevant stakeholders to promote collaborative working and to ensure there is a strong, respected voice for UK BAME whole organ and stem cell donation and transplantation.

  10. Update on NBTA work • Developing a strategy for youth engagement in raising awareness of BAME donation • Reviewing current work undertaken by NHSBT, Trust Organ Donation committees, Lead Clinicians in hospitals, SNODs, AN and UK Stem Cell Oversight Committee • Reviewing the plans of the new National Commissioning board and GP consortia groups, including the specification for transplantation • Reviewing the current training available on understanding the cultural and religious aspects of the major BME communities • Reviewing the impact of previous campaigns in this area • Developing toolkit for partnership working between providers and BAME communities • Publishing guidance on effective partnership working using current examples of good practice and assisting in shaping NHSBT’s Organ Transplant 2020 Strategy • Developing ways in which organisations involved in promoting BAME organ and stem cell donation can be supported on a sustainable basis • Publishing guidance on how more individuals from BAME communities can be recruited to work in this area within the NHS and within the BAME communities • Publishing guidance on how BAME patients, carers and family members can be involved in campaigning and stimulating public debate about a priority organ donation system • Developing guidance on the collection, analysis and use of statistics with NHSBT, AN and others such as the renal registry, stem cell registry, transplant centres, etc

  11. Review of the NBTA data on stem cell provision • A published report on Black, Asian and Minority Ethnic Stem Cell Donor Registration and Transplantation Data by the NBTA shows that donors from Black, Asian and Minority Ethnic backgrounds (BAME) must urgently come forward if the prospects for those requiring transplants are to improve. The purpose of this paper is to pull together data to highlight issues it raises for the future. For the first time, UK stem cell data on BAME donation has been analysed. The results raise a number of serious concerns about BAME donation that urgently need to be addressed.   • Data analysed include registrants on both Anthony Nolan’s Register and NHSBT’s British Bone Marrow Register (BBMR), information from the Office for National Statistics, transplant recipients and patients on the transplant lists.  • Richard Davidson, Katherine McBrien and Dr Rob Lown from Anthony Nolan, Li Ying of NHSBT and Dr Bronwen Shaw of the Royal Marsden/Anthony Nolan were key individuals in the preparation of this report and for providing the data.

  12. INTRODUCTION • The UK Stem Cell Strategic Forum Report in December 2010 estimated that if you’re white, you have as high as a 90% chance of finding a match but if you are from an ethnic minority you could only have a 40% chance.   • The three organisations also have different joining criteria: Anthony Nolan currently allows those aged between 16 and 30 to join; for NHSBT it is those aged between 18 and 49; and for the WBMDR it is those aged between 17 and 45 years old. All organisations have strict health criteria so only those in good health can join. • Unfortunately the data on the three registers is not completely uniform or consistent so it is difficult to create a complete picture of the ethnic breakdown for this report. The three organisations used different ethnic categories and codes as they recruited potential donors to their registers and these changed over time.

  13. CONCLUSIONS AND RECOMMENDATIONS • The increase in the number of those on the stem cell registers in the UK from BAME background is very welcome. • The data on ethnicities on the stem cell registers is incomplete and because historically the three registers used different categories and codes (which also changed over time) it is very difficult to get a clear breakdown of the ethnic make-up of the Anthony Nolan and NHS Stem Cell Registry. • It is clear that significant improvements have been made to the data capture on ethnicities and only a very small percentage of those recruited in the last twelve years have ‘unknown’ ethnicity. • Cells from cord blood allow for a greater mismatch than those from adult donors. This is of particular benefit to patients who find it difficult to find a match on the register. More should be done to educate clinicians in the UK about the benefits of cord blood.

  14. A multi-pronged approach to increasing the number of BAME stem cells should be taken. Not only should we recruit more BAME donors to the adult register in the UK but we should also increase the number of cords collected from BAME mothers and we should support the establishment and development of registries in countries of origin of BAME people living in the UK. • There is very little data on the ethnicities of those patients waiting for a stem cell transplant. This makes it very difficult to confidently assess the scale of the need for potential donors from different BAME groups. • Anthony Nolan should work with Transplant Centres to ensure that ethnicities of all patients are captured, provided and monitored when searches for unrelated donors are carried out. • Transplant Centres should be encouraged to use the same ethnicity codes as the Anthony Nolan and NHS Stem Cell Registry to improve information and analysis of the data.

  15. It is also very difficult to gauge how many patients with blood cancer or other blood disorders are suitable for a stem cell transplant (whether from a relative or a matched unrelated donor). This information would help us ascertain whether some ethnicities are more likely to find a match within their families or if some ethnic groups are given alternative treatments and are never given the chance to find a match. • There is even less data on patient outcomes (broken down by ethnicity) so it is difficult to ascertain whether BAME patients have poorer outcomes than Caucasian patients.  • There is worrying information from both overseas and from Anthony Nolan suggesting that potential donors from Black, Asian and Minority Ethnic groups are much more likely than Caucasian potential donors to withdraw when they come up as matches for patients. • The NBTA recommends urgent action to address the fact that 90% of white Caucasian patients in need of a bone marrow transplant may find a match, while for BAME individuals the matching rate can be as low as 30%-40%.

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