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Implementing a Genetics Outreach Service in Oldham

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Implementing a Genetics Outreach Service in Oldham Implementing a Genetics Outreach Service in Oldham Lianne Davies [1], Katrina Stephens [1], Naz Khan [2], Arjmund Zaheer [3] Public Health, Oldham Council [1], Genomic Medicine, Manchester Foundation Trust [2] Families Health and Wellbeing Consortium, Blackburn [3] Background Ethnic Composition of the wards with the highest mortality rate - Source ONS Census 2011 Evidence indicates the potential benefits of supporting informed marriage and Child Death Overview Panel (CDOP) Ward % White % Pakistani % Bangladeshi % Other white reproductive choices within families by data highlighted that children from 2011 2011 2011 2011 promoting genetic literacy and enhancing black and ethnic minority communities St Marys 34.0 49.1 8.6 8.2 access to genetic services. are over represented in infant and child Werneth 23.4 48.6 17.8 10.3 Districts mortality figures in Oldham. The most Electoral Wards Failsworth and Hollinwood 1 Failsworth West Medlock Vale 61.5 22.8 6.9 8.8 Oldham common causes of death are congenital 2 Failsworth East Saddleworth and Lees 3 Hollinwood abnormalities and genetic disorders. Alexandra 63.4 22.8 3.8 10.0 Chadderton 4 Werneth Royton 5 Medlock Vale Waterhead 76.8 16.1 1.3 5.7 Shaw and Crompton 6 Alexandra Oldham has a significant proportion of 7 Coldhurst 8 St. Maryʼs people from populations where cousin Hollinwood 86.9 5.6 2.4 5.1 9 St. James 15 14 10 Waterhead marriages are common. 22.5% of the 13 11 Saddleworth West & Lees 17 Coldhurst 27.1 3.7 60.2 9.0 12 Saddleworth South Oldham population is from an ethnic minority 13 Saddleworth North 16 9 14 Shaw group, including 10.1% Pakistani and 7.3% 18 15 Crompton 16 Royton South 10 Bangladeshi. chronic disability and nine children may not Disability is £70,000, suggesting that 7 17 Royton North 19 8 18 11 12 Chadderton North 1 live beyond the first year of life. effective intervention to manage and treat 4 19 Chadderton Central A broad estimate would suggest there are 20 Chadderton South consanguinity related recessive disorders is 20 6 around 20 births annually in Oldham with In 2008 Heart of Birmingham PCT estimated 3 likely to be a cost saving due to its impact 5 consanguinity related disorders, of whom that ‘the approximate average cost per 2 on Severe Learning Disabilities alone 1 2 around eleven each year would live with a annum of care packages for Severe Learning Aims and Objectives of the Service Expected Outcomes Aim: To build trust and confidence • Up-skill front line • More empowered decision making by affected families. amongst communities and key health, education • Reduction in prevalence of recessive disorders in the borough. stakeholders and support individuals and early years staff; • Staff more competent in managing and signposting families with inherited disorders. and families affected by autosomal including awareness • Affected families feel more empowered and supported. recessive gene disorders (more likely raising sessions, liaising to occur in cousin marriages), to make with GP practice and children • Affected families are able to access the appropriate support required. informed choices about a possible centre staff, health visitor teams • Conversations about inherited disorders in affected communities. genetic risk. in high BME areas and midwives and paediatricians. Ensuring Objectives regular input into Oldham GP Results so far • Raise genetic literacy in the training and protected learning time Increase in referrals between April 2016 population by; encouraging events, Greater Manchester public conversations on inherited disorders health specialist training schemes and March 2018: in the community, supporting and and continuing professional families referred into the developing the cohort already development. trained, build on existing training 20 genetics counselling service and integrate messages on genetics • Develop and promote an information into mainstream health promotion and advice service for families families referred into the outreach service activities. affected by genetic disorders. 54 through community agencies Model Almost 100% attendance reported at the genetics counselling service; previously DNAs could be as high as 50%. The improvement is attributed to the introduction of a Through collaboration between the specialist Genetic Family telephone support and reminder system. Service, Public Health team and the Voluntary Sector, Centred Enhanced a 3-tiered multidisciplinary approach to improve Genetic Service 193 multi-agency partners services to the South Asian community has been Training Frontline 20 training sessions delivered to working to improve awareness. implemented in Oldham, with the employment Professionals front line staff totalling and training of a Genetic Outreach worker. Community Engagement 38 families receiving ongoing Initiatives 198 people trained. support post genetic counselling. Feedback from the community Two sisters that have Next Steps: had carrier tests stated that “the results will • Expand the reach of targeted awareness raising campaigns – using A young Bangladeshi mother influence our decision website and social media, targeting young people and key medical/ Two young men seen in was delighted to receive results making in the future” social care professionals. that her baby is not affected by clinic commented that they “now have a better Tuberous sclerosis. • Identify key community leaders and enlist their support, alongside the She stated that she “has understanding of recessive been fully informed of risks in inheritance” and with this commissioned service, to reassure the community that this service is knowledge will be able to future pregnancies” and feels not a challenge to tradition, religious beliefs or cultural practices. “confident that she will be able make informed decisions in their future life. to make the right choices”. • Develop referral pathways with obstetric and midwifery, primary health care focusing on GPs and health visitors and neonatal and paediatric services. A grandmother stated that the Islamic teacher information being given by the commented “the service References Genetic Outreach Worker is valuable being provided is and “it’s very important that we raise ‘invaluable’ and needed 1. Darr, A. (2010) Preliminary work on the modelling of consanguinity related issues, awareness especially in families that to raise awareness University of Bradford (unpublished). already have children with genetic within the Muslim conditions.” And if she’d had this community.” 2. Chambers et al. (2008). level of knowledge some years ago, then she would have definitely made 3. N. Khan, G. Kerr, H. Kingston (September 2016) Community engagement different choices. education: addressing the needs of South Asian families with genetic disorders. Journal of Community Genetics. DOI 10.1007/s12687-016-0278-0. www.communitygenetics.org.uk Consanguinity Outreach Poster.indd 1 16/05/2018 11:04.
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