Transforming Care Advocacy Workshops Advocacy for people with

Transforming Care: Advocacy Workshops Advocacy for people with learning disabilities and / or autism with behaviour that challenges, and their families Joint Improvement Programme (JIP) and Inclusion North Feb 2015 1

Transforming Care said… • Good information and advice, including advocacy, is important to help people with challenging behaviour and their families to understand the care available to them and make informed choices. • But there is a very wide variety in the quality and accessibility of …advocacy, including peer advocacy and support to self-advocate. • Councils, health bodies and all care providers, should provide good quality, transparent, information, advice and advocacy support for individuals, families and carers. 2

JIP stocktake findings (Oct 2013) • Some good engagement at local level with userled and family carer groups , often including advocacy BUT organisational changes and other pressures have led to less engagement. • People/families often not involved in the design or delivery of their support. • A need to increase the development of, and investment, in service user, family carer and advocacy activity. 3

What do we know? (NHS England data) 2600 people at 30 September • 2585 with access to an advocate • 15 without Of the 2585 with access • 2413 have an “independent advocate” • 172 do not have one Type of independent advocate: • • • IMHA – 1537 IMCA – 344 Independent person – 344 Family member – 903 Self-advocate – 775 4

What do we know? (Census 2014 data) 3230 people (as at Sept. 2015) If not using, why not? • 2320 (72%) making use of an independent advocate • 715 (22%) people not using an advocate • Remaining 6% – unknown • Person chose not to use – 540 (17%) • Person on waiting list – 30 (1%) • No independent service - 10 • Other – 135 (4%) Type of independent advocate: • • • Treatment and advocacy Family member - 1070 (33%) • 1, 295 patients receiving treatment without consent of Second Opinion Independent person - 1170 (36%) Approved Doctor (SOAD) IMCA - 350 (11%) • of whom 1, 005 (78%) made use of IMHA – 1455 (45% an independent advocate. Non-instructed Advocate – 430 (13%) 5

The advocacy project Winterbourne taught us lessons about the need for good advocacy for people living in specialist services We looked at - What are the advocacy arrangements for people living in specialist services across the North East? 6

Statutory advocacy Funding is focused General case advocacy What keeps people safe? User Involvement Family Voice Little investment Citizen Advocacy Peer Advocacy Self advocacy 7

What do we want to achieve today? • Look at what has happened in London since the last advocacy event • Share what is possible around advocacy and looking out for people • Start a different conversation with people around what is needed 8