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

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

The advocacy project 6 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?

7 What keeps people safe? Funding is focused Little investment

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