Blackburn with Darwen CCG Protected Learning Time Event

Blackburn with Darwen CCG Protected Learning Time Event 18 th June 2015 Pendle Suite Dunkenhalgh Hotel

Welcome Dr Stephen Gunn Clinical Lead for Primary Care

Care. Data Dr Hereward Brown Clinical Lead for IT and Information

Contact Details: Jeanette Pearson: Engagement Lead for the CCG – 07810413402 Helen Sanderson Walker: Comms Lead for the CCG – 07880476109 Janet King: NHSE Regional Head of Intelligence – 07876851841 Justine Banks: HSCIS Project Co-ordinator – 07909093044 Email: Care. data@lancashirecsu. nhs. uk

Housekeeping:

Agenda 12. 30 – 13. 20 Registration and lunch 13. 20 – 13. 30 Welcome and Introduction Dr Stephen Gunn 13. 30 – 15. 15 PREVENT Training Marie Gibbons 15. 15 – 15. 45 Refreshment Break and Networking Session 15. 45 – 16. 45 Genetics Outreach Project 16. 45 Close Naz Khan

Prevent and the NHS • Marie Gibbons • Regional Prevent Coordinator • NHS England (North West) § Gordon Mc Geechan § Prevent Sergeant Lancashire Constabulary Blackburn with Darwen CCG 18 th June 2015

Contest UK Counter Terrorism Strategy q. Prevent q. Pursue q. Protect q. Prepare Section number 8 NHS | Presentation to [XXXX Company] | [Type Date]

Learning Outcomes………. Making the Link……… • Recognise • Respond • Refer • Report 9 NHS | Presentation to [XXXX Company] | [Type Date]

Beware of assumptions • There is no single profile of a terrorist – there is no checklist to measure someone against • This is not about race, religion or ethnicity we are here to consider the exploitation of vulnerable people 10 NHS | Presentation to [XXXX Company] | [Type Date]

Prevent in context • Counter terrorism and security Act February 2015 is intended to deal with multiple aspects of the terrorist threat ………. • Ideology –what happens on social media-work with social media to remove /counter narratives • Disrupt /delay travel –intended to protect the vulnerable • Support individuals at risk of being drawn into radicalisation

Prevent Objectives………. . • Prevent individuals from being drawn into terrorism and ensure that they are given appropriate advice and support; • Respond to the ideological challenge of terrorism and the threat from those who promote it; • Work with a wide range of institutions and sectors (including social care, health, HE/FE and faith communities) to address risks of radicalisation 12 NHS | Presentation to [XXXX Company] | [Type Date]

Prevent Duty 2015 Aim: Ensure common and higher standards across organisations ensuring that Prevent and Channel processes are effective 3 key themes ………… q. Leadership – • Understand risk of radicalisation • Ensure staff understand & build capability to deal with it • Communicate and promote the importance of the duty • Ensure implementation

Prevent duty q. Working in partnership • Effective partnership working • Demonstrate compliance with the duty • Demonstrate evidence of productive co-operation q. Capabilities • Understand radicalisation • Help available and how to access it • Have appropriate awareness /training

Twin towers 9/11 London Buses ATTACK COMMUNITIES Fundraising Radicalisation PLANNING Recruitment Vulnerable People within our community

16

Current risks and threats

Blackburn with Darwen ………. 18 NHS | Presentation to [XXXX Company] | [Type Date]

Susceptibilities / Vulnerablities…. . ? 19 NHS | Presentation to [XXXX Company] | [Type Date]

External Internal Foreign Policy Domestic Policy Employment Opportunities Group Identity 20 Identity Social Exclusions Drug/Alcohol Distrust of Civil society Low self esteem Mental Health issues Religion – lack of theological resilience Links to criminality Changed situation/circumstances Bereavement Rejection Change in appearance Media Propaganda Internet availability Extremist/Terrorist ideology Peer Pressure Availability of travel

Your role………. . ? • NHS Key partner • Identified Prevent Lead / Support network • Policy and Procedure • Training & Awareness raising • Sharing concerns – having a conversation! Safeguarding is everyone’s business

Procedure for staff to follow………. . • Concern identified • Share concern with Prevent/Safeguarding Lead (adhere to internal Prevent policy/procedure) • Prevent Lead to have conversation with CCG Prevent Lead • Consider referral to Police Prevent Team for consideration at Channel Panel In event of suspicion of imminent or actual harm to individual(s). Do not hesitate contact the police on 101 or 999 22

In Summary • Be vigilant • Who is your prevent lead? • Share your concerns with a “conversation” • Use common sense • Act on your concerns

Thank you • Marie Gibbons Regional Prevent Lead (north west) NHS England Telephone office – 01138 248 938 Mobile – 07896717647 • Gordon Mc. Geechan Telephone – 01254 353541 / 01772413366 preventteam@lancashire. pnn. police. uk 24 NHS | Presentation to [XXXX Company] | [Type Date]

Refreshments and Networking

Genetic and Social Implications of Consanguineous Marriage Naz Khan June 2015

Objectives of training • To understand the Genetic and Social implications of consanguineous marriage • Presentation of local data on autosomal recessive disorders • The impact of genetic disorders on infant and childhood mortality/morbidity locally • Intervention strategies in East Lancashire • Feedback on evaluation of the service development post and lessons learnt • Develop confidence in initiating discussions about issues relating to marrying close relatives • To be able to identify families for referral • How to make appropriate referrals to the enhanced genetic service • Familial cancer in South Asian communities

BWD Population • 2011 census - BWD: 26. 4% south Asian (12. 1 Pakistani 13. 4 Indian) • Growing population - 2001 census 19% South Asian • Average UK towns and cities 4. 7% • • • 27% Muslim in BWD (4. 8% average in UK) 63% of Pakistani’s In Blackburn were born in Pakistan • 25% of deliveries in East Lancashire were to women of Pakistani/Indian Heritage (based on local figures from ELHT trust 2013/2014 • BWD 17 th most deprived local authority area in the Country (DCLG 2014) Ref 2011 Census/ONS

Measuring mortality in the early years • Measures of mortality relating to early life are critical indicators of the general health of a community • IMR used by organisations including the WHO • Included in NHS Outcomes Framework, Health & Wellbeing Strategies • Allows comparisons between regions • Can be used to track improvements over time

Definitions • Infant Mortality Rate (IMR) is the number of deaths of infants under one year of age per 1, 000 live births. • e. g. In 2012 there were 2300 live births in Bw. D and 10 deaths in infants < 1 year IMR=4. 3 per 1000 live births • Neonatal mortality rate is the number of deaths of infants under 28 days per 1000 live births • e. g. In 2012 of the 10 deaths under 1 year in Bw. D. 7 were infants < 28 days NMR= 3. 0 per live births IMR= _10_ x 1000 = 4. 3 deaths per 1000 live births 2300 NMR= _7__ x 1000= 3. 0 deaths per 1000 live births 2300

Infant mortality rates-by country Source: OECD health data and WHO Global Health Observatory]

Category Deaths by Category in Bw. D Following the review by CDOP a category for cause of death is assigned to each case. 30/71 (42%) cases were due to either: Chromosomal, genetic and congenital anomalies 26/71 (37%) Perinatal/neonatal events 6/71 (8%) cases were due to SUDI Name & description of category No of cases 1 Deliberately inflicted injury, abuse or neglect * 2 Suicide or deliberate self-inflicted harm * 3 Trauma and other external factors * 4 Malignancy * 5 Acute medical or surgical condition * 6 Chronic medical condition * 7 Chromosomal, genetic and congenital anomalies 30 (42%) 8 Perinatal/neonatal event 26 (37%) 9 Infection 10 Sudden unexpected, unexplained death * 6 (8%)

Blackburn • Infant Mortality 2013 -2014 : 6. 5 per 1. 000 significantly higher than national and North West average of 4. 3 and 5. 0. • Childhood mortality 2013 -2014: 16. 6 higher than the national average of 12

Consanguineous marriage • Consanguineous means of the same blood • Consanguineous marriage is marriage between blood relatives • 20% of the worlds population live in communities that favour consanguineous marriage • 8. 5% of all births are to parents who are consanguineous • 25% of cousin marriages in the UK are among white Source: World Health Organization majority population 1985 Advisory Group on Hereditary Diseases. Community approaches to the control of hereditary diseases. Unpublished WHO document: HMG/WG/85. 10. Available at: http: //whqlibdoc. who. int/hq/198586/HDP_ WG_ 85. 10. pdf Genetics Communication Diversity Customs governing first cousin marriage (GP Murdock, Ethnographic Atlas, 1967) Latitude

Consanguineous marriage • Customary in many parts of the World Pakistan, Bangladeshi, Middle East, Some Indian, Irish travellers, Some Refugee groups. • Pakistani Heritage have the highest rate of cousin marriage (at least 55%) • In Bw. D, 95% of Asian parents with an affected child were in a consanguineous marriage • Integral Cultural and social practice • Associated with Islam but neither encouraged nor discouraged by Islam

Reasons why people consider consanguineous marriage • Cultural • Strengthens family ties and support systems; keeping connections • Ease of finding a more suitable match and having more stable marriages • Maintains a woman’s status within the family hierarchy • Maintains family lineage • Preserves culture and tradition • Financial benefits • Obligation to kin • Economic / Immigration

Health Issues associated with Consanguinity • Increased risk of genetic disorders • High infant mortality and childhood morbidity • Limited engagement with Health Services • Lack of awareness of inherited disorders • Stigmatisation • Communication issues

Cousin marriage and inherited/genetic disorders • Does not influence chromosomal abnormalities, sex linked or dominantly inherited disorders • Impacts exclusively on recessively inherited disorders • Populations where partner choice is random A. R disorders random and scattered • Communities that practice consanguinity AR disorders cluster within extended family groups

Genetics • • • Our bodies are made up of millions of cells. Cells contains genes 2 copies of every single gene One copy inherited from mother, one copy inherited from father 30, 000 genes Most people are carriers for a at lease 1 -2 recessive disorders Carriers healthy Population risks of being a carrier for some conditions Rare recessive disorders

Autosomal recessive disorders • • • 2 -3, 000 known autosomal recessive disorders Phenylketonuria (PKU) Congenital adrenal hyperplasia Spinal Muscular atrophy Many biochemical/metabolic disorders

Unrelated couples: chance of a recessive disorder

Couple 1 st cousins: chance of a recessive disorder

What to do? 10 -15% of consanguineous couples are at risk 85 -90% of consanguineous couples are not at risk • Discourage consanguineous marriage at the population level? • Try to identify and inform those at risk?

Try to identify and inform those at risk? (A family-centred approach) • In families transmitting a disorder, an affected child will be born once around 12+ cousin marriages • Paediatric and genetic counselling services are aware of all diagnosed affected children So, Start with the affected person WHO Draw up an extended family tree recommen Offer information to all family members ded approach Offer carrier testing to all members Aim for married couples & children & young people Provide information and long-term support

Dr Benson’s Study (2002) Two Part Study: • The Range and Prevalence of Recessive disorders in the Blackburn population. • Health Perceptions and families response to Genetic Information

Results of Dr Benson Study • Incidence of definite recessive disorders in the Asian population was 12 times that of the incidence in the white population. • 83 different recessive disorders diagnosed. • Where data recorded 95% of Asian parents were consanguineous. • 13 recessive disorders per 1000 Asian births • Several Asian families with 3 or more affected children

Service development Bid • DOH under the Genetic White paper (2003) • To improve the clinical service available to South Asian origin who have children affected by A. R disorders. • To reach extended family members in consanguineous families so that they understand their own risk of having affected children and can make informed reproductive choices including arranging future marriages within/without the family.

Evaluation • Of the 72 questionnaires distributed, 46 were completed. The questionnaires were analyzed using SPSS. Overall the service to families has been received very positively

Multidisciplinary strategy

Regional Genetic services Clinical Laboratory (Cytogenetics, Molecular and Biochemical ) Based at St Mary’s Hospital in Manchester (with some clinics in DGHs) Covers NW region (population of approx. 5 million) ~250 people in team Doctors (consultants and Registrars) Counsellors (MSc Genetics) Clinical scientists & Admin

Enhanced Genetic service Bw. D Clinical service: Local, hospital-based (RBH) clinical genetic service established for families of South Asian heritage who have children affected with autosomal recessive disorders Proactive service follow up extended family members East Lancashire service Community engagement project: Working with 3 rd sector: Health and Well being Consortium/Home start to employ a Genetic Outreach worker, to liaise directly with families and community based health and support services (BWD and Pendle)

Training Front line Health Professionals • Understand the genetic and social implications of consanguineous marriage • Understand their own role in the community genetics infrastructure • Be clear about their professional responsibility and boundaries • Be aware of health services that people can be referred to for further help • Speak with confidence about issues relating to marrying close relatives

Role of Genetic Outreach worker • Identify families in the community who will benefit from additional support • Set up open access groups in children centres to make genetic information accessible to everyone • Take family histories and explaining AR inheritance • If families unsure of referral to genetics genetic outreach worker can work with family in own home

Challenges • Primary care is route for access to genetics services • To develop an approach which is feasible within a consultation (or 2) • Screening questions (EMIS) • To ensure patients / couples have consistent information • Which is non-judgemental and will maximise engagement

Challenges in engaging families • Family dynamics / non-disclosure of information • Concept of genetic counselling • Large number of potential conditions, each individually rare • Attitudes to termination of pregnancy • Attitudes to consanguinity

Families to consider referring • Have an affected child – diagnosed/undiagnosed • Known A. R Genetic disorder in the family • Several individuals affected- similar clinical phenotype • Pregnancies ascertaining family history • Diagnosis through New-born Screening • Disability/affected individuals in the family • Adult who is affected with a condition themselves • Sibling affected with a AR disorder

Exclusions • Thalassaemia and sickle cell refer to thalassemia and sickle cell centre unless they are a carrier couple • Eczema, haemachromatosis, Alpha 1 antitrypsin, cystic fibrosis carriers. • Child developmental delay see Paediatircian first for initial work up

Cancer and South Asian Families • Cancer not considered genetic • Families do not reveal family history or request referral to genetics • Underrepresented in cancer referrals to the dept. • If cancer at young age consider referral to genetic • Ask specific questions re family history

Cancer referrals • Early on-set cancer <50 years • Breast cancer <50 years refer family history clinic initial assessment • Bowel cancer or multiple bowel polyps >10 <50 years refer to Genetics • High grade serous ovarian cancer <60 years refer to genetics • Unusual cancer at young age <50 years refer to genetics • If unsure phone/MANGEN website referral guidelines

Key Messages • GPs can identify families at high risk • Family first point of contact is with the GP • GP- ask about family health -Know families - assessment of the genetic risk in the family - refer to RGS or seek advice from RGS

Simplistic messages alienate and confuse This person thinks it is wrong to marry in the family and is blaming us But I know lots of people who are married to their cousins and have healthy kids Your child is disabled because you are married to your cousin But we already have a healthy child But I know people who are not married to their cousins whose children are disabled

Advances in Technology • Genetic testing available for an increasing number of conditions • Micro array • Testing through Panels • Exomes • Genome England study • NIPD • FFDNA • PGD

Key messages to share and pass on around genetic inheritance • Genetics affect us all, the more we understand the issues and the risks, the more we will be able to make informed choices

Referring Families Naz Khan Genetic Counsellor Genetic Medicine 6 th Floor St Mary’s Hospital Oxford Road Manchester M 13 9 WL Tel: 0161 276 6285 /Fax 0161 276 6145 Email: naz. khan@cmft. nhs. uk