1. GETTING IT RIGHT GUIDE What families need to know Carole Haynes Angela Cole

2. WHY A GUIDE? Transforming Care 2012. Families -  often not involved in decisions about where people go  difficult to visit  concerns and complaints often not acted on NHS England (London) wanted to do something to help

3. IT’S NOT EASY FOR FAMILY MEMBERS  Worried about their relative, and their future  Units can be unsettling  Professionals can seem very powerful  The law is complex  Need to know about a lot of different things  …but it may also be a relief

4. FAMILY MEMBERS HAVE A LOT TO OFFER  what they know about their relative  monitoring …questioning and calling services to account, and safeguarding their relative’s rights  making sure there’s a constant focus on returning home – helping to make 'short stay' a reality

5. TO DO THOSE THINGS… Family members need to know about  people’s rights  how the system works  what should be expected, and  what they can do to influence what happens. The booklet aims to help family members speak up well for their relative.

6. WHAT THE GUIDE DOES Gives lots of Information Says what family members should expect to happen: standards Makes suggestions: things to do Gives links to other organisations and helpful resources

7. HOW WE DID IT  An ‘advisory group’ of family members met three times  We thought about the design and the content of the booklet  The group said what should happen (the standards)  Other family members were ‘readers’  A solicitor checked the legal bits

8. WHAT’S IN IT  How and why people go into hospital units  About different units  Getting involved and being heard  Rights and responsibilities  Assessment and treatment

9. MORE  What happens day to day  Returning to community life  What to do if you have concerns  Organisations that can help, and helpful things to read

10. KEY MESSAGES  try to get good assessment and treatment for the person at home first, to avoid them having to go into hospital;  visit and have lots of contact with the person if they do go into hospital  encourage other people in their wider circle to maintain regular contact;  provide the hospital team with detailed, background information;  create a positive relationship with the team by being as calm as possible, and not confrontational;

11. MORE…  be open to advice from the professional team;  give advice and ‘explain’ things about the person to the team;  don’t make assumptions - ask questions so you understand what is happening, and why;  attend meetings, and send someone else if you can’t;  support the advocate who is linked to your person by providing information and meeting with them;  stay observant – and raise any concerns you have promptly.

12. WHAT YOU CAN DO  Get a copy  Dip in and out  Tell families about it  Tell professionals about it Help get it to people who need it!

13. YOU CAN GET IT FROM NHS England (London) – Stephan Brusch www.england.nhs.uk/london/2014/10/10/l earning-disabilities

14. THE BOOKLET FOR PEOPLE IN HOSPITAL CHANGE wants to know what you think. Go to their website www.change.org.uk