RCN Clinical Leadership Programme Cohort 8 25 th November 2011

1. Sandra OwenCommunity Learning Disability Nurse RCN Clinical Leadership Programme Cohort 8 25th November 2011

2. Worked for Powys Health from 1977 Qualified as ENLD in 1979 Conversion to RNLD in 1990 Staff Nurse then Ward Sister in both Long Stay LD Hospitals Team Leader of A&T Unit due to relocation Started work as Community LD Nurse in 2003 Degree - BsC Community Health Studies in 2006 (Specialist Practioner) As part of my current role I undertake both Care Coordination and Care Management

3. Pregnancy and Learning Disabilities

4. The case of a young pregnant woman with Learning Disabilities, which has had a profound effect on myself and the Learning Disability Team

5. Case study: Chloe • 20 year old pregnant mum to be (not previously known to Learning Disability Team) • Referred to team by Children's Services as family known to Children's Team • Assessed by myself – Chloe didn’t meet our criteria for services, apart from lack of social networks, which she herself didn’t see as a problem. • Maternity Services had been informed that Chloe “lacked capacity” and therefore had grave concerns about the welfare of the unborn child.

6. Case study (continued) • Midwife and Learning Disability Team provided Chloe with parenting lessons before the birth. • Arrangements were made for transfer of Mum and baby to Midwife-led unit after the birth to support Chloe to develop her skills. • Baby carried to term, Chloe very excited after the delivery which was uncomplicated. • Baby was admitted to SCBU with feeding difficulties (causes unknown) • Four days after delivery, Chloe was told she wouldn’t be able to keep her baby.

7. Questions: • How many women with Learning Disabilities became pregnant in Powys over the last five years? • How many women were supported to keep their baby after birth ? • How does this relate to national statistics for this group?

8. Answers: • Nationally there are no accurate figures on the number of parents with learning disability in the population • Whatever the figure, it is generally acknowledged that the number is rising and that, “they represent a sizable population whose needs are not being addressed by the health and social services” (Booth 2000) • English survey cited 48% of parents with learning disability were not looking after their own children (Emerson et al 2005) • Powys Learning Disability Services Strategic Plan 2011-2013 does identify Relationships and Family life as one of the ten key priorities for service development

9. Strategies for improving practice Learning Disability Project Team formed October 2011 • Raise awareness • Audit • Bench mark • Training – Law in particular Mental Capacity Act 2005 • Training – parenting skills • Independent Assessors – for the legal processes • Programme of support for Parents • Resources – Real Life Babies, CHANGE Information

10. References • Affleck, F & Baker, S. (2004) You and Your Baby, Leeds, CHANGE • Booth, T. (2000) Parents with learning difficulties, child protection and the courts, Representing Children, 13(3), pp175-188 • Emerson, E, Malam, S, Davies I & Spencer K. (2005) Adults with Learning Difficulties in England 2003/4

11. Thank you for listening sandra.owen@powys.gov.uk