speaking up and staying strong.pdf

8/14/2019 Speaking Up and Staying Strong.pdf

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Speaking Up

and Staying

StrongExploring Self-Advocacy in Assessment and Treatment

Unitsa Report by the North East Advocacy Project
http://www.ntw.nhs.uk/


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Published in 2013 by Inclusion North;

191, Belle Vue Road,

Leeds

LS3 1HG

United Kingdom

Tel. 0113 2626 409

[email protected]

Thanks to;

The patients who volunteered to work on this project and helped us create this pack

and their families for their support.

NHS North East.

Northumberland, Tyne and Wear NHS Trust.

The North East Advocacy Project Steering Group.

Front Cover Picture

Keeping Strong drawn by a member of the group.

Written by;

Kellie Woodley - Inclusion North.

Graphics

Tim KeiltyNew Prospects Association.
mailto:[email protected]:[email protected]:[email protected]


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Contents

About this projectUnderstanding self-advocacyMaking decisionsGood and bad supportLooking out for each otherHaving a say in your careInterventionsOur groupwhat we learnedThings you can use

A poster made by one of the Self-Advocates in

the North East. For her, self advocacy is aboutjobs and careers, living on my own,

relationships and education.


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About this Project

About Winterborne View

This project started because of the abuse people faced at

Winterborne View. Winterbourne View was a unit where

people with a learning disability were sent to live if they were

not coping very well at home or if the support they got in the

community broke down.

It was a big building over 2 floors and 46 people lived there,

they had staff all of the time. The staff were supposed to help

and support people to feel well and happy, and then get ready

for life back in their local community.

Instead people lived there for a long time, often getting

abused, dragged out of bed, restrained in ways that hurt them,

picked on and bullied.

The abuse at Winterbourne View was shown on Panorama on

BBC1, and there were a lot of stories on the news and in the

papers.

Lots of people who pay for, or work in, services were upset and

angry that this could happen to people, and wanted to do

something to try and make sure this NEVER happens again.
http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=69S9qjOpuzjf7M&tbnid=abQpBsqMtsE9_M:&ved=0CAUQjRw&url=http://www.communitycare.co.uk/articles/07/08/2012/118437/winterbourne-view-a-case-study-in-institutional-abuse.htm&ei=Z5QvUrvXH-mR1AWJxIGgDw&bvm=bv.51773540,d.ZG4&psig=AFQjCNFG7uYw_m43G8bOLNyRn940woHE5g&ust=1378936289178592


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What we wanted the project to do

There were lots of reasons why the abuse at Winterbourne

View happened. The government is working on ways to make

sure that this does not happen again.

We wanted to find out what it would take for people who end

up in treatment and assessment units to be able to speak up.

We think that people will be safer if they;

are strong

confident

know their rights

and look out for each other

This pack tells you what we did and how we did it so you can

try it yourself.


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What has advocacy got to do with it?

We all know that one of the ways of protecting people who

live in services is to listen to people themselves and the people

who love and care about them.

It is also really important that people know what should and

should NOT being happening to them, and what to do if

something bad is happening.

We know that when people can speak up for themselves, or

have someone who is on their side and will stick up for them, it

can make a big difference.

The word advocacy is not always understood and can be

confusing for people.

As part of this project we are talking about advocacy as

speaking up for yourself or someone being on your side and

speaking up for you.

We are talking about this being EVERYONES job not just paidadvocates, as we now know that having a paid advocate is not

enough to keep people safe.

So this project did not focus on paid advocacy but looked at

self advocacy, and if we could support people to speak up

more and understand their rights in the services where this is

hard to do.


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This Pack

We worked with 10 people living in a specialist hospital on 2

treatment and assessment wards.

We worked with them for 3 months to explore things that are

important about speaking up, decision making and rights.

This pack is the result of that 3 months work; it gives you

examples of all of the exercises and activities we did.

At the back of the pack there are resources you can print or

photocopy to run these exercises yourself.

We hope that these resources will be helpful in supportingpeople to gain the confidence to speak up and get the right

support.

It is worth remembering that supporting people to gain

confidence to speak up in any environment can take a long

timethis pack is just the beginning of thinking about this.

This pack can be used by anyone who finds it useful, but it was

designed in for people living in services which might be locked,

services which might have to stop people from doing certain

things and where people are held under sections of the Mental

Health Act.


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Getting started

We started by working with some trusted colleagues from our

local hospital and asked them to be part of this work. We were

lucky they were very interested and very supportive.

We wrote to the board of the trust and the Chief Executive and

got them to agree to the work so that everyone was on board

and this couldnt be stopped if it got tricky.

How to get started on the wards

our top tips

Meet with the people living there in a group orindividually.

Explain the project.

Spend time in peoples environments, get to know them.

Meet with the staff team, explain the project.

Agree what will happen if people are concerned orworried about how the project is going.


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Rules for working together

If you have to staff support in the session get theminvolved at the very beginning.

Work together with people setting out what you wantto do and how you are going to do it.

Work with the staff to build confidence with themlistening to people when they are happy and UNHAPPY.

Checking if the project makes a difference

Do short questionnaires or interviews with people aboutwhat they understand about speaking up. Do this rightat the beginning and again at the end. (There is an

example at the end of this pack)

Do the same questionnaires with staff.

Working with the

right people can help

make the project a

great success


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Forming a groupthings to think about

Where will you meet up will it be on the ward orsomewhere else?

How many people will be there?

Open or closed group?

Men and /or women?

Staff involvementward staff or others.

Rules of the group.

Length of the group session.

Length of project over all.

In between work home work.

How the group the will work- group work, role play etc.


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Understanding self-advocacy

What is self-advocacy?

What are self-advocacy groups?

This is what members of the group in the North East said;

Speaking up for yourself.

Learning how to speak up.

Learning how to make it easier to speak up when it ishard.

Coming together as a group to support each other andhave a greater voice to change things.

Leaning about rights and standing up for them.

If we dont

speak up, no one

will know what

we want

Speakingup is

hard, but you

have to do it


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What we did to explore this

Getting to know each other poster, we thought it wasimportant that we started the group with thinking about

who we are and sharing the great things about us.

We talked about other self-advocacy groups and whatthey are doing, for example the Stay up Late campaign.

Practiced speaking up a range of tasks were given outto people they ranged from asking for a pen to finding

out when your next meeting is - people had great fun

doing this.

Home work people had to find out and ask othersabout self-advocacy.


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Our ideas for the future

Keep a group going for everyone to come together andlearn.

Have people who have been in hospital or specialistservices come and help people run their own group.


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Making decisions

Everyone likes to be in control of their life and making

decisions, big and small, is a really important part of being in

control.

When you live in services which might take some of this

control away - life can be really tough.

It can also be really hard to make decisions if you are not used

to making them.

It can be hard to make decisions if you are not well.

Its hard when you

have no say over being

here and all you want

to do is go home


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Who decides gamewho decides me or staff?

3 top decisions that people would change.

Action planning to make peoples 3 changes happen.


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Our Ideas for the future

Make is easier for us to make more decisions.

If people didnt have to live in these places for as longsome of this wouldnt matter.


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Good and bad support

People have told us over and over again that having the right

support to live the life you want is so important.

Knowing what good support is often isnttalked about.

We wanted to help people think what support they would

want and what support they would not want.

We thought that if people were really clear about what good

support was for them, they were less likely to put up with bad

support.

Having good staff

makes you feel

better


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Made a life sized drawing of a member of staff andwrote on characteristics of good staff/bad staff.

We used cartoon stories to explore what good and badstaff would do differently in different situations.

Homework was to make a job advert to get the staffthey wantgood staff!


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Interview the staff, even if the staff are just movingaround and are not new.

Train the staff about being good staff and what makesgood staff.

Train the staff about what makes good staff for each ofus individually and what works when supporting us.


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Looking out for each other

Having friends and feeling part of something can make a big

difference in your life.

When people are living in services this can feel really hard, youmight be away from all of your friends and feel lonely.

You also might not get on with some of the people you are

living with. This was a big problem for some of the people in

the group.

We said at the start of this pack that advocacy is EVERYONEs

responsibility, and looking out for each other is a good way of

people speaking up and supporting each other outside of an

organised group.

Dont worry I can

help you if you find it

hard, well work

more together

Having someone

through good times

and bad makes the

difference


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Did an exercise about what makes a good friend.

Thought about ways we can look out for each other andwhat we can tell new patients.

Thinking about others, being on a ward is hard foreveryonehow can we stick together?

We wanted to encourage people to keep an eye on eachother and make sure everyone is safe.


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Have buddies on the ward or in the service, someoneyou can rely on.

Introductions by patients for patients.

Giving others the heads upa real introduction to life onthe ward.


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Having a say in your treatment

What is treatment?This was the first thing we thought about

when planning this session.

People found it hard to tell us what their treatment was.

People often said that treatment was medication even those

who didnt take any.

If people do not truly know what treatment they are getting,

how can they be involved in it?

Being involved in this usually means being part of something

called CPA meetings. These meetings have to happen if you

are held under a section of the Mental Health Act and lots of

professionals have to go to them.

These meetings can be really scary because there are so many

people there to talk about you.

If we all know

what we are trying

to do, I can help in

my own treatment


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Art gallerystyle questions, we had lots of cards all overthe walls, people had to wander around and write on

post it notes.

Made what helps you? cards for meetings to helppeople be comfortable, help staff include people better

and help people be more prepared.

Shared easy read information about differentmedication.


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Interventions

At Winterborne View we saw people being treated and abused

in the most horrible ways. Sometimes this was while people

were being restrained.

Sometimes people and those around them need to be kept

safe restraint is one way of doing this in dangerous

situations, it should be the last thing staff use.

Abusing people is never called restraint and part of this project

was to help people understand what should NEVER happen to

people.
http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=pV0qj1xa9AcmjM&tbnid=t8MTg8ARHB55TM:&ved=0CAUQjRw&url=http://www.thetimes.co.uk/tto/news/uk/article3047563.ece&ei=oZovUtiZHLKl0wXfg4H4Ag&bvm=bv.51773540,d.ZG4&psig=AFQjCNH_OVJ4g2QxE7sg39B6awqbHsAGAg&ust=1378937845359698


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Used role play looking at different interventions.

Talked about what people should do if bad things werehappening.

Used cartoon stories to think about different ways ofreacting to people who are upset or distressed.


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Our groupwhat we learned

We had 10 to 12 people who were part of the group for 3

months, all of the people lived in a specialist hospital on 2

Treatment and Assessment wards.

We worked for a month before the group started, getting to

know people, understanding the environment, and working

together on resources etc.

The group was open and new people could join at anytime,

this did make it difficult. If you do this we suggest you need to

make time to work with new members outside of the group to

prepare them.

We held the sessions off the ward in a building used for

activitiesall people liked that the group was not on the ward.

This did mean some people had to have staff to escort them to

and from the group.

I worked with people for onemonth before the groups

started, just hanging out and

getting a better understanding

of how things might work for

people


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The room was quite big and we had tea and coffee available

throughout the session, with a break in the middle.

We set the sessions up so at the beginning we talked for a little

bit, then did some activities.

We tried to make the sessions fun and always supported

people to work together to build the looking out for each

otherelement into all that we did.

We encouraged people to speak up and join in. We saw big

improvements in peoplesconfidence over the 3 months.

Some people said it had made a big difference and that they

loved coming to talk about this stuff. Also people liked

working with others from different wards and felt the group

was fun.

At the beginning we found out that no one knew what self-

advocacy meant and after the group 77% of people did. The

group helped people speak up for themselves and helped

people understand the rules were which staff had to follow.

People found that speaking up meant staff listened to them

more and felt that the group did support them in some areas,

but that with more long term work with people - the results

would be better.


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We hope this resource pack helps you to think about some of

the important issues people face. We are still trying hard to

find new ways to give people a voice and make the changes

that are needed so people feel listened to, respected and

supported, wherever they are staying.

This resource pack is just the beginning of trying to explore

some of these issues with people.

We hope that this pack will build over time as other peoplearound the country try it, add to it and improve it.


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Things you can use

In this section you will find all of the resources we used,

with explanations of how we did it. You can print them out

and photocopy them.

All of the resources are arranged under the headings in this

book. You could plan your sessions around these headings,

doing one section at each session.


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Things you can use

Getting to know you posters

People worked on their own to create these posters then shared them

with the rest of the group. It was a great way to start the project off in

a positive way, help people learn more about each other and have a bit

of a laugh. Facilitators should do all of the exercises themselves.

Researching self-advocacy

This is important so people can see that there is a point to speaking up

and there is a lot of power in coming together in a group. We used the

internet to research People First and focussed on the Stay Up Late

Campaign in our discussions.

Practicing speaking up

People were given a card with a task on, from asking about food in the

canteen to asking your consultant when your CPA meeting is. People

really enjoyed this exercise; it broke down the barriers and got rid of

peoples nerves.


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Things you can use


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Making decisions

Things you can use

Who decides? game

We used flashcards detailing almost every decision, from waking up in

the morning to going to bed at night and asked participants to write on

the poster who decides?

Weve included an example of the flash cards here, you can download

the complete set of flashcards fromwww.inclusionnorth.org/resources

there are about 10 pages! Or you could just write a long list on

flipchart.

Facilitators should be involved in this exercise (and all of the others!)

not everyone decides everything in their life, but finding even the

possibility of more control over decisions can have a big impact.

Ward staff who took part in the sessions could see how even a little

change in the routine could make a big impact on peoples experiences.

From peoples lists they were asked to circle the 3 things they would

most like to change, the group action planned these together.
http://www.inclusionnorth.org/resourceshttp://www.inclusionnorth.org/resourceshttp://www.inclusionnorth.org/resourceshttp://www.inclusionnorth.org/resources


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Making decisions

Things you can use


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Good and bad staff

Things you can use

Good staff/bad staff

We used a life-sized drawing of a figure and got participants to write

down characteristics of good staff and bad staff on big post it notes

the posters on the next pages would do the same job. Encourage

participants to explore the characteristics, if they mention a particular

member of staff ask what is it about them that makes them

good/bad?

Cartoons

We used the cartoons to explore how staff would respond to different

situations and how people would want them to respond. These

cartoons helped to deflect conversations from real life examples and

people could talk safely about things. As the exercise continued people

did talk about real life examples and shared them with the group.

Job descriptions

As a homework task people had to think about how they would

choose the best staff they could do this individually or arrange to

meet up with other group members.


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Good and bad staff

Things you can use


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Good and bad staff

Things you can use


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Good and bad staff

Things you can use


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Good and bad staff

Things you can use


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Good and bad staff

Things you can use


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Things you can use

What makes a good friend?

People in our group talked about how hard it is sometimes just to be on

the ward, and how sometimes it is easy to turn on each other and be

harsh with each other especially new people. We used the goodfriend posters to explore friendship; people worked on their own then

shared them with the rest of the group.

Marya new patient

We talked about Mary who has just been admitted and explored how

she might be feeling and what could be done to reassure her. We

spent a lot of time talking about how new patients are sometimestreated, and if we are going to look out for each other to stop bad

things happening we need to stick together.

We asked group members to talk about how they felt when they first

came on the ward and what might have helped.


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Things you can use


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Interventions

Things you can use

Role play

The group developed some role play about interventions, taking on the

roles of staff and patients. They acted out good interventions and bad

interventions for the same situation. The group discussed the reactions

and feelings of patients and staff. From this we talked about what

people could do if they saw staff doing things in the wrong way.

Peters story

We talked about Peter who has just been admitted, and created a story

of how he might be feeling, how he might be treated by staff and other

patients and what might happen if he became angry. We thought

about good ways to support Peter and bad ways group members

made their own lists of good ways staff can help them or intervene

when theybecome angry or distressed.

Cartoons

We used the same cartoons from our session on good and bad staff,

but this time used them to start discussions about good interventions

which worked for group members. Group members shared their

experiences of good/bad interventions.


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Interventions

Things you can use


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Interventions

Things you can use


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Questionairres

Things you can use

Questions for patients

We asked the same questions at the start of the project and at the end.

Do you know what Self Advocacy is?

Do you find it easy to speak up for yourself?

Do you feel you can ask questions about your treatment?

Do you know when all of your meetings happen?

Do you think they listen to what you say?

Do you find it easy to tell the nurses when you are unhappy with

something?

Do you know who can help you speak up?

Do you want to look out for the other patients?

If you are unhappy about your care and treatment, do you know who

to talk to?

Do you know what rules the staff should follow when helping you?

Do you know what decisions you can make for yourself?

Do you know what decisions the staff can make for you?


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Questionairres

Questions for staffWe asked the same questions at the start of the project and at the end.

Do you know what self-advocacy is?

Do you know how you can support self-advocacy on the ward- day to

day?

Do you know what the role of the independent mental health advocate

is?

Do you know who on the ward is entitled to one?

Do you know what the role of an independent mental capacity

advocate is?

Do you know what a general advocacy worker role is?

Do you know how to refer to advocacy for people on the ward?

Do you know what decisions you can make as a staff member?

Do you know how to best support the patients when tough decisions

are made for them?

Do you see yourself as an advocate for all the patients?

Do you think it is your job to help the patients have a say about what

goes on on the ward?

Do you think it is your role to help patients challenge things about the

hospital?

Do you think it is your job to help the person get support to speak up

for what they want?

Things you can use


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