GETTING IT RIGHT GUIDEWhat families need to know

Carole HaynesAngela Cole

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

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

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

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.

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

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

WHAT’S IN IT

How and why people go intohospital units

About different units

Getting involved and being heard

Rights and responsibilities

Assessment and treatment

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

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;

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.

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!

YOU CAN GET IT FROM

NHS England (London) – Stephan Brusch

www.england.nhs.uk/london/2014/10/10/learning-disabilities

THE BOOKLET FOR PEOPLE IN HOSPITAL

CHANGE wants to know what you think.

Go to their website www.change.org.uk