From Pillar to Post May 2009: Linking Meaningful Participation to Improved Service Delivery

Transcribed by Luann Johnson, August 2009

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From Pillar to Post:

Linking Meaningful Participation to Improved Service Delivery

A Case Study and Discussion

The Long Gallery, Parliament Buildings,

Stormont Estate, Belfast

PIPS/ Greater Shankill Bereaved

Families Right Group

Thursday 21st May 2009


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TRANSCRIPTION: Tape 1 of 1, From Pillar to Post: Linking Meaningful

Participation to Improved Service Delivery, PPR

Long Gallery, Stormont, Thursday 21st May, 2009, Belfast.

_____________________________________________________

Tape 1, Side 1: From Pillar to Post, PPR

Maura McCallion: ...mentioned the rise in the number of people who

took their own lives in Northern Ireland last year. So, there is, very

much, an issue that is ongoing. It’s difficult and complex. There’s very

much a link to deprivation in terms of suicide rates. So, in more deprived

areas in Northern Ireland you will find higher rates of people taking their

own lives.

North Belfast has about 15% of the population taking prescribed drugs

for mood and anxiety disorders. This is the highest figure in Northern

Ireland. It really is a big problem for Northern Ireland and something

that, you know, everyone in this room is motivated to try and change.

Improvement in mental health services is urgently needs. And, one of

the ways to do that is to increase participation of service users and

carers and families and change.

This was very much recognised by the Bamford Review over the last few

years—the implementation of user involvement in service delivery,

service evaluation, service implementation—as key. It’s also recognised

as Alex mentioned by the Protect Life Suicide Strategy. One of its key

aims is to ensure consultation with bereaved families on achieving its

aims.

Today we’re going to focus on the PIPS Greater Shankill Bereaved

Families Rights Group Campaign to achieve a Card Before You Leave.

Again, Alex mentioned this—mentioned how it seems to all of us here

quite a simple change but a very, very significant one which will give that

person a life line in the days after they’re discharged from hospital. So

that they can know that there will be someone there with professional

expertise who will be able to help them in the very near future. So that


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people who are involved in the campaign think this will be a significant

change in trying to protect life.

So, this campaign is what we’re going to be looking at today and looking

at the implementation issues around that.

I’m going to pass over at this stage to Sally Stitt and to Kathy Vella who

are going to introduce themselves—their part of the group and also to

introduce a DVD for us all to watch. Okay? Thank you.

(Applause)

Sally Stitt: Good Morning, my name is Sally Stitt and I am a member

for PIPS Great Shankill Bereaved Families Rights Group and have been

a member since it started in 2006. I’ll hand over to Kathy to introduce

herself.

Kathy Vella: Hello, my name is Kathy Vella and I have been a member

of the group since early 2008. I became a member after being involved

in a focus group in Shankill Women’s Centre that the group was carrying

out to find out the extent the issues they had selected to work on

affected other carers or users of services.

I would now like to introduce a short DVD which highlights the lessons

from our Card Before You Leave Campaign. We wanted to give you a

flavour of what it was like to try to get change. And, one of the issues

we had selected to work—follow-up appointments. The other issues

were the complaints system, information from GPs on medication

prescribed and a patient’s condition, and participation in decision-

making.

The first part of the DVD will cover our work up to the start of our

campaign. It includes the Rights in Action event in 2007 when the group

presented human rights indicators to measure change on their issues

and a timetable for change - to a panel of international experts.

DVD (inaudible)

Maura McCallion: Okay that showed the real difficulties that obviously

the group are facing. You do realise, you know, the amount of effort


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that’s involved for them just to try and implement what is one small

change. At least three years of work that kind of puts into context to

hear the challenges that we’re all facing to increase participation and

service delivery.

I’m going to at this stage introduce Sally Stitt to talk a bit about the

monitoring process and what they’ve been doing and then hopefully

what she thinks participation can achieve.

Sally Stitt: I want to tell you a bit about the difference we feel

participation has made to our campaign for change.

As part of our campaign we have been surveying mental health service

users at six month intervals. We’ve been asking them questions to

monitor our indicators – to see if things are getting better on the ground.

We usually survey around 50 service users and a number of

organisations including Aware, and the Shankill/Ardoyne Healthy Living

Centre helped us with this. The aim is not to produce a watertight piece

of research. What we want is the experience of those who have recently

used services on the ground. Those are the voices we want to hear.

One of the issues we have worked on the longest has been around the

complaints system. We wanted to ensure more people knew about it,

and also had the help to use it when things went wrong. We thought it

was the main way lessons could be learned.

The first time we monitored how many people had accessed the

complaints system – we found that 31% of dissatisfied people had made

a complaint. The next monitoring in November 2008 showed that 14%

of dissatisfied people had made a complaint. Our most recent

monitoring has shown that only 6% of dissatisfied service users made a

complaint.

While we monitored this indicator, we knew there was a new complaints

system being put into place. We held meetings with the Department

about it, but also highlighted to them that as a first step, people needed

to be made aware that the complaints process existed and told how to


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use it. We recommended that a poster be placed in the waiting area of

the Mater hospital on display at all times but even this was difficult to

achieve. But this idea has been taken on and we have seen results.

In our most recent monitoring 52% of service users had noticed

information was displayed in the hospital waiting area on how to make a

complaint. Most respondents noticed it at the Mater hospital.

It is disappointing that fewer and fewer people seem to be using the

complaints system when things go wrong. The main reasons they give

for this is that they didn’t know how and they didn’t think it would make

any difference.

In contrast the group’s main achievement has been the commitment

made by the Minister to implement a Card Before You Leave

appointment system. In our first monitoring in September 2008, only

13% of mental health patients received a follow up appointment within a

week. The second time we monitored this figure it did not change. In

August 2008 we received a letter from the Minister. He confirmed he

wanted to have a Card Before You Leave system implemented by April

2009.

(Can I have a drink please?...Sorry about that.)

This was a real achievement for us, but we didn’t want to stop our

monitoring. It’s how we know what is really happening on the ground. In

our most recent monitoring in May 2009 we found that 36% had received

their appointment card within one week. But more than this, 33% had

received a Card Before You Leave. We will be launching our next

Progress Report containing the results of our most recent monitoring in

June.

We can see how being helped to participate in decisions has led to small

changes, but ones that could save lives. The period after discharge is

particularly high risk for those vulnerable to suicide. We have always

said this would be a lifeline. Thanks to the Minister it is now on the way

to being a reality.


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Thank you.

(Applause)

Maura McCallion: Thanks Sally, it’s great to hear the detail of what

you’re actually working on and the successes that you are making even

thought, obviously, there’s a long way to go.

It’s my pleasure now to introduce our international speaker. We’re

delighted to have Dr. Helen Potts with us today who’s flown in from

Boston. So it’s very good of you to do that. I’m keen to get onto Helen

to give her some time to talk to us – give us your experience – share her

experience with us.

In your packs you have her biography. I’ll just highlight a couple of

things just while she’s getting her notes together.

Helen is both a lawyer and a public health practitioner which is probably

an unusual combination. She has done a lot of work on access to health

by marginalised groups across the world. Her research interest at

present is on the right of participation by individuals and groups and

public health strategy development. And, she’s currently the Chief

Programs Officer of the Physicians for Human Rights in Boston.

So, I’d like to welcome Helen.

(Applause)

Helen Potts: Hello. Good afternoon and it’s an absolute pleasure to be

here. I really love coming over and hearing about what the PPR Project

has been up to and the various groups that the project works with. If

you’ll just hold on Sally I do the same thing—so I need to pour a glass of

water that’s under here.

First off, I’d just like to thank and commend the group for all of the work

they’ve done. Not only for what they’ve achieved in the sense of the


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Card Before You Leave because that is important in and of itself. But,

it’s about setting your own indicators because it’s only through people

being involved in active and informed decision making or the setting of

indicators that rights can move from an abstract level to something that’s

a reality on the ground—even though it may be a long and difficult

process.

Another thing that is to be congratulated or well—everyone is to be

congratulated on with respect to this project is that it’s really important to

get this type of information out to a much wider audience because

there’s lots of small projects going on all over the world. I mean, I know

in Peru there’s a whole monitoring mechanism of people in the

community—this relates to maternal health and maternal mortality

issues—but, there’s a whole group of indigenous women who have had

human rights training and who are actually monitoring the delivery of

health care in local centres. They work with the local ombudsman and

what happens is they go in, they monitor, they write a report with the

assistance of the ombudsman and then once a month they meet with the

Director of the Health Care Centre.

And so, getting—people can pass information from the north to the south

and from the south to the north and one way the information can get out

is through international journals because, especially those journals that

publish readily accessible literature. And, recently in the Health and

Human Rights, an international journal, it’s an open source journal, it’s

free, you only need to Google ‘health and human rights’ and

‘international journal’ and the web site comes up. They had a series on

participation and a Card Before You Leave, participation and mental

health in Northern Ireland, was accepted and is going to published.

It’s not—I don’t believe it’s available on-line yet but it should be very

soon that it comes out.

And also I regularly use information from this group and also other

groups that PPR Project works with because I’ve recently started—I’ve

been in the United States now since last September running these

health programs and one of our intentions is to get the United States to

ratify the International Covenant on Economic, Social, and Cultural


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Rights. And, we’ve already—PHR, Physicians for Human Rights, is an

advocacy organisation and so they go to Capitol Hill and they knock on

doors of members of Congress. And, I’ve already experienced what

happens when you say the right to health—there’s this complete shut

down, you know. So it’s a matter of needing to network, needing to have

information.

And, when I sit down with people and talk about what the various groups

are doing and the development of indicators—it’s just as if a light goes

on and they say, ‘okay, I can understand this. It’s no longer abstract and

maybe it is something that is worth fighting for.’

Those outcomes, the Card Before You Leave, and the development of

indicators—they are really important. But, what also is extremely

important in the right to health and participation is the process of

participation itself. The nature of the conversation that goes on between

the various groups because at the heart of participation is power. And

especially in the area of mental health issues you have a very large

differential in power—especially if you’re dealing with an institutional

mechanisms of participation—something that’s been set up by the

department of health itself.

So, human rights, especially the right to health, is very, very much

concerned with process as well as outcomes. Not only what’s been

achieved but how it was actually achieved.

And, one of the reasons why it has this preoccupation with process is

because of the barriers that people face when they try to enter into any

participatory institutional mechanism or any mechanism. The standard

ones are education, socio-economic status, ethnicity, and there’s a long,

long, long list.

Another one though that’s really important is previous experience

which— a previous experience of participatory event. And say in the

sense of health service users, mental health service users, the whole

idea of the participatory event may be to get access to information that


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decision makers can’t actually get access to. So, it’s getting people to

repeat stories.

And so, if you have people sitting there in a forum and you’re repeating

your own story time after time after time and you’re never seeing

anything come from this, you eventually become quite apathetic. You

become quite mistrustful of the whole process. The process itself loses

credibility and you’re not likely to come back again.

Another barrier which is often not considered, especially again, in these

mechanisms set up by institutions—is the cost of attendance.

Participation is frequently seen as a voluntary event. Something that

you can get yourself to, pay your own way, sit down, talk—you could be

losing a day from work to attend at an event. Whereas the traditional

decision makers are sitting there, its part of their working day, they’re

actually being paid for being there. And, in some cases they can write a

little chit for their cups of coffee or whatever and then be reimbursed.

Another barrier with respect to institutional mechanisms is there can be

confusion over what the purpose of the forum is all about. Is it truly a

decision making body, is it truly meant to get at the powerful voices of

service users or is it basically to endorse what is already been pre-

decided or just to get access to information that they can’t get access to

unless the traditional decision makers actually speak with somebody

who has the information.

Another barrier which is frequently not addressed is looking at the other

side of the coin. I recognize that none of us go through life without

having some sort of trouble at least once in our life. We all have

something going on inside us that means that we are vulnerable in

different ways.

But, mental health service users are particularly vulnerable. And, what is

not frequently looked at is the privilege that traditional decision makers

have. If you’re talking about having a true, meaningful, participatory

process where you get the powerful voice of users to the table—the


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traditional decision makers will have to change. Their behaviour will

have to change.

And, quite frequently they’ll need support to do it because we’re not born

necessarily with the ability to address this power differential to actually

participate. So, to have a meaningful process may well involve capacity

building on the part of both, not only service users, but also service

providers.

So they are just some of the barriers.

But, I haven’t really discussed why are they so important. What is

participation when you’re speaking about the right to health? If you’re

concerned about process what is it that you could be looking at? What

is it that you may need to measure?

Participation itself—it’s well established that people are entitled to active

informed participation in health related decisions that affect them. This

is nothing new to the health sector. Even though this is what human

rights set out. The human right to participation is not replacing anything

the health sector has said at least since 1946 when it was first put in the

World Health Organisation Constitution.

It was reiterated in 1978 in the Alma-Ata Declaration. It was repeated

again in the Ottawa Charter for Health Promotion and it was repeated in

the Jakarta Declaration on Health Promotion. The United Kingdom was

there at every single event.

But, you know, we still need to unpack it. When it comes to the right to

health—what are people actually entitled to? They’re entitled to a

mechanism, a forum for this participation to take place. If it’s created by

the service providers there are certain things that need to be considered

and need to be looked at. But, it can also be created by service users

and, if it is, it needs to be supported by government in some way

because it’s ultimately the government obligation to ensure that

participation takes place.


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They’re entitled to access to information, access to the decision making

process itself, and importantly, access to a review of the process. Or, if

a decision wants to be challenged which is something that people are

just starting to think about this. And so it’s something I won’t be going

into a great deal unless it comes up in the discussion because that

would be something that we would like to come out of today’s

discussion.

So participation also in the context of the right to health is frequently

confused with information gathering, education, and also consultation.

All consultation is doing is seeking information from people a bit like

information gathering. And they’re important things to do—education,

information gathering, consultation—very, very important ways of

collecting information. But, they are not participation and the reason

they’re not participation is because there is no guarantee in those

processes that the voice of people will be heeded and that there will be

actual follow through on what is being discussed. So, if it’s actually

consultations that people are doing—that’s fine, just call it consultation,

don’t call it participation.

So why is participation important? It’s generally known and it’s true—it

results in more effective, robust, sustainable policies that are meaningful

to the people to whom those policies are addressed.

The Card Before You Leave shows that it can result in the identification

and addressing of problems in the delivery of services. It can identify

low cost interventions. It allows people to track progressive realisation of

the various human rights. It’s an essential part of accountability for

human rights.

But, what needs to be done to ensure (how’s my time going?)—what

needs to be done to make sure with respect to the mechanism. You

need to—especially if you have a mechanism that’s created by the

service providers. You need to be considering the purpose of the forum.

Is it truly a participatory forum? Is it truly going to be capable of making

decisions or is it simply to confirm something that’s already been

decided?


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It needs to be clear about what can and cannot be discussed. One

needs to be concerned about cost. I mean there’s lots of different

mechanisms but there’s certain considerations in determining what is the

most appropriate mechanism. Because that is one of the indicators is,

or could be—is the mechanism that has been selected an appropriate

one? Could there have been some other way of going about this?

There’s two other criteria which are really essential if you’re talking about

a meaningful process bringing the powerful voice of people. The first is

fairness because ultimately, as I said, it’s about levelling the playing

field. It’s all about power and levelling the influence of that power. To

have a fair process you’re referring to the opportunities amongst all

interested parties to attend in the first place, to start discussions, to

challenge statements that are made, to argue, to participate in the

decision making process itself.

How can one try and insure that? Well, there’s three activities that can

also be part of sub indicators. The first one is talking about agenda

setting. And this comes up actually in the case study as well. In

provider led mechanisms it’s a very, very significant issue. In the

institutional context some people will always be in a stronger position to

set the agenda than others. That is just a reality. So what needs to be

considered is – well, how do we deal with that?

And, when it comes to things like mental health services what you’re

having is that participatory process is actually—unless you address it—

reflecting what’s happening in the wider health service area.

So, there needs to be this conscious effort to reflect the service user’s

interest and two ways of doing it is perhaps, have the Chair of the

committee being, or the participatory forum, being a service user.

And, another way of doing it is always have standing issues on the

agenda that service users can actually bring to the event. And, so even

though there may be an agenda that it is sent out in a timely manner it’s


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not necessarily the final agenda. People can always add issues to that

actual agenda.

A second activity which is really important is rule making and facilitation.

We all know that people can be constrained in any participatory event.

They may feel shy, they may feel awkward. The pamphlet in your

envelope has one here—we felt afraid of feeling stupid. So, it’s really

important to have rules and facilitation.

The rules can talk about how people are treated—that they should be

treated with respect. That jargon should not be used. There’s another

one in here, I think, government representatives spoke in Double Dutch,

we felt talked down to because of the language they used. There can be

rules about that. Definitions need to be sorted. What do things actually

mean?

When it comes to things like facilitation it’s an essential component as

well when you have a severe differential in power. And, it’s also

extremely important when you have an institutional mechanism. The

idea of having a facilitator is to encourage quiet participants to speak, to

manage the whole discussion, to actually enforce the rules because the

idea about rules, just going back to those for a minute, it’s not that they

guarantee good behaviour but, what they do is they help you identify bad

behaviour and that’s what their purpose is for.

Now, with respect to institutionally led forums for participation, it is

essential that they facilitator be independent because the role of the

facilitator— it has been experienced in mental health service forums—

where that person has also been part of the department has actually

reframed what service users have said into more acceptable language.

And, if the whole idea is to level the playing field, reduce the power

differential that does anything but. If anything it undermines the validity

of what a person’s personal experience is all about.

Then there’s the third activity which is discussion and I hasten to add, all

of these issues overlap because it’s not a matter of you go into a

participatory event and you have the agenda setting, then the rules, then


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the discussion, and the components of each one of those—they

influence discussion, right? The idea is that encouraged by the previous

two activities a fair discussion refers to all participants having the

opportunity to be heard – to have their voices heard.

And, it overlaps with the second major indicator of transparency. What

transparency is talking about, the understandability of information and

clarity in how decisions are made. And so therefore, as part of

transparency there may well need to be a decision on how to decide if

we can’t agree. And that needs to be sorted out before, you know,

before people into the nitty gritty of things.

With respect to transparency, unless information is clearly understood,

delivered in a timely manner and everyone’s views are of equal value,

there cannot be a fair and transparent and meaningful process. There’s

no bringing powerful voices to any debate.

So, I’ll just finish off quickly with a few words on transparency. You have

to ensure that people sufficiently understand. That overlaps with the

rules in the sense of what the definitions mean, no jargon is to be used.

Materials including the agenda are to be delivered in a timely manner.

And that is the case in one of the examples in the paper on a Card

Before You Leave. People didn’t receive the agenda at all or they

received it on the day with not enough time to absorb what was

happening.

It’s really important to avoid a hierarchy of knowledge in the sense that

often clinical decision makers or the traditional decision makers, their

information is considered more important than the subjective experience.

That is, a person’s personal experience which is so essential to

developing policy will be important to the extent that it’s relevant to the

discussion at that time.

And, this is where facilitation comes in as well because you may get a

case of where somebody is reporting or talking about a concern which

relies on their personal experience. Say they went to the doctor and

their drug treatment was changed or something like that and they


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weren’t particularly happy about it. And what the body’s talking about is

whether, you know, who should come in on training on information for

people. You know, so should GP’s be trained in how to speak with

people given that they speak with people every day in their job. Often

when we’re telling a story we go off on a tangent—I know I do.

So, I’ll talk about the little part that’s important and then that’ll prompt me

to think of something else. And, then, if I’m in a group that might prompt

somebody else. And so, if you had two service users, somebody else

might bob up and say, ‘oh yes, that happened to so and so and it was...’

And, it gets off the point. You’ll often find—sorry?

[Laughter]

Unidentified Female: I’m probably the worst. I love stories.

Helen Potts: Yeah, good—well no—that’s the point about it. Those

stories are really valid. And often you’ll find though in institutional

mechanisms that if the second part of the story is not relevant to the

current decision making it will not necessarily be treated as valid. It will

largely be ignored and that also is why you need this facilitator to allow

people the time to speak, to look at behaviour to make sure that people

aren’t artificially cut off because you also get other information coming

out there. So it could benefit people.

I said all this—[laughs]—so, basically, yes that too. Basically, all I want

to do is just sum up here to just remind you all that participation – it

forms a compulsory part of the right to health. It may seem that there’s a

lot of issues to consider, well, the reality is that there are a lot of issues

to consider. It’s very easy to say we want to bring the powerful voice of

people to decision making – that is a very complex sentence and needs

to be broken down and indicators pulled out to make sure it actually

means what it says.

Perhaps on the one hand, officials who write documents or policy people

who write those documents have an entirely different idea in mind than

the people who sit on the other side. Or, as they’d say back in the


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United States I’ve learnt, outside the Beltway. Inside the Beltway is

inside D.C. There’s two entirely different meanings.

Two constant issues emerged the whole time – fairness and

transparency. Or you can change that second word transparency. I’m

always trying to find a better word. Fairness is really easy to

understand, I think, but transparency, even though it’s supposed to

mean ‘clear’, it doesn’t seem to translate very well.

It’s all about levelling the playing field. I think that’s really important to

keep in mind. Bringing the powerful voice of all participants and all of

these issues need to be taken into consideration if you really want to

take participation seriously and do it effectively.

That’s it.

[Applause]

END of Tape 1, Side 1, PPR


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TRANSCRIPTION: Tape 1 of 1, From Pillar to Post: Linking Meaningful

Participation to Improved Service Delivery, PPR

Long Gallery, Stormont, Thursday 21st May, 2009, Belfast.

_____________________________________________________

Tape 1, Side 2: From Pillar to Post, PPR

Kathy Vella:...decisions about mental health services.

Gerard McCartan: For my part I was able to offer my experience in the

independent review process and the death of my son, Danny, and the

board that was set up to implement the recommendations from that

review.

Throughout our process we have wanted to make sure that our

confusion and frustration is not repeated for others working to make the

right to health real.

In the end it is about our right to be involved actively and meaningfully in

decisions about how mental health services take place. By way of an

example we begin—we listed concerns we had with the participation

process set up by the health service to improve mental health services.

You can see some of these on the slide.

We highlighted who was involved in important decisions and the

language that was used during meetings. We even looked at the way

the meetings were run and how service users were prepared to engage

in those meetings.

Then we began to turn these experiences into questions that could be

used in future to monitor our participation. To put it another way, we

created a basic check list to hold government accountable for how they

engage with us. We now have set concrete steps government can take

to make sure participation was meaningful for service users. These are

called indicators.

Kathy Vella: Finally, and importantly, we linked the indicators into local

policy and international human rights standards with the help of the


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policy officer at PPR. Although we have the human right to participate in

decision making we soon discovered that no one had ever really worked

out what this means by practice.

By assessing these indicators what we have done is show what

government needs to do to make our rights real. Most importantly

though, it’s the service users who are assessing these indicators. We

know what barriers we have met when trying to participate. We can’t

see why these things have not already been done.

The first thing we will do with these indicators is assert how meaningful

our participation in the Card Before You Leave implementation board is.

The board’s chair has already agreed to use these indicators in the

board’s work.

Second, we will explore how other groups can use a similar process to

measure their own participation in other boards in which service users

sit.

We want our work to reflect the diversity of experience people have had

and for other groups to adapt these indicators to their own work. To get

this started we have left a booklet for you on your seat which tells you

about our indicators in a very practical way and what you can do next to

support us in the campaign to make participation more meaningful.

We want to reduce the sense of being pushed from pillar to post when

trying to get change.

Gerard McCartan: The final step from our perspective is to ask how or

if this sort of approach can be mainstreamed into the health policy and

practice. It is not enough for small groups to have to face frustration

every time they try to participate in government making decisions.

We need to make sure that the government is held independently

accountable for meeting standards of participation. These are their

responsibility and our right.

We would like you to come back in September with the results of our

research on participation and with the way forward.

Thank you.


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[Applause]

Maura McCallion: Thanks Kathy and thanks Gerard. It’s really good to

see it broken down into practical steps that everyone can understand

and everyone can then understand that that’s what’s needed in order to

realise the right to health.

We’ve got some time now for discussion and Helen is going to lead us in

that. I will kind of look for anyone that looks like they might be about to

ask a question and pounce of them. And encourage them to either ask

a question, make a point, or reflect on what you’ve heard so far. But, I’ll

pass to Helen initially.

Helen Potts: About the Card Before You Leave and the new indicators

– they provide useful and innovative examples of how to use human

rights standards in an innovative way to make change on the ground. I

haven’t really seen all these indicators until now—they’re just—and I

think they’re fantastic.

I can’t wait to see what information they receive. They clearly come

within what the right to health understands with respect to participation.

I mean that third one from the top—are there arrangements to allow

service users to chair the meetings at times.

The group in the middle, the first three, clearly relate to transparency.

The last one in the second group is incredibly important about providing

independent support to actually attend and participate.

I mean it will be invaluable information that comes from these.

The context for this discussion is what we’ve seen today and what it has

required for a local group to achieve a small change. And, central to the

discussions should be the issue that we need to create independent

ways to stop this pillar to post that has been going on.

The practice of participation has, to a certain extent, allowed frustration

to be turned into concrete steps in the commitment to achieve the Card

Before You Leave appointment system.

The use of human rights has removed pressure from families who have

had to fight persistently for their loved ones or themselves to be treated


20

with dignity and respect. And, clearly because of the cross party

support, all of you sitting in this room, clearly there is support for this

approach and for moving forward.

So, the purpose this morning is to get your impressions on what you’ve

heard, but also, to get you to contribute to the growth of the work and its

way going forward and its next steps.

And then, over and above that, to explore about whether there should be

a strict—Gerard’s idea—of whether there should be a structure or a

coalition, whether this is needed to hold government accountable. Or, if

we should have an independent body that holds government

accountable for the way people participate.

So, to review, if these indicators show information that a process has not

been particularly fair or has not been transparent –should there be

consideration given to developing a body which actually has the

mandate to review the process of participation.

Richard Dixon: Hello. I’d just like to—a couple of comments and also

just for information. I’d be interested just to hear around the room what’s

thought about this.

My name’s Richard Dixon. I’m from a new organisation called the

Patient Client Council in Northern Ireland and included in our remit is a

remit to promote the involvement of patients and the public across health

and social care, to ensure that there are resources in place to enable

that to happen in terms of the capacity building.

We’re there to provide representation advocacy for people who wish to

make complaints about the services they receive. And, it’s early days for

that organisation and, you know, I’ll happily accept any feedback,

positive or negative on it today. But, just to let people know that that is

there. I know that this group are aware of the presence of the Eastern

Health and Social Service Council with was its predecessor which was

involved with some of this. But, just to note that that particular thing does

exist.

A general question for debate—one of the things that I find if I’m talking

about, you know, asserting a right to involvement or a right to

participation the expectations here—one of the key resistance is that


21

there seems to be which is another part, in my opinion, of the health

service agenda, is the minute you mention rights you will get the word

responsibility thrown back at you. And, I don’t know whether that’s

always necessarily the case but it does seem to me to be a sort of

common reaction. Okay, if you’re going to assert your rights you also

have to take responsibility. And, that frequently comes up in agendas

around, you know, it’s come up—I’ve been in meetings about obesity,

I’ve been in meetings about smoking, I’ve been in meetings about using

emergency services making 999 calls. I’ve just thrown out as a sort of

area of discussion.

Okay? Thanks very much.

Helen Potts: Thank you.

Maura McCallion: I often hear—my comment to the—the minute you

refer to rights—what about responsibility—is to say well, human rights

they specifically accept that there is personal responsibility. But, it goes

back to, I can’t fill my responsibility or I have great difficulty in filling parts

of my responsibility if I’m not in an environment in which I can actually do

that.

So, say with—you use the idea—the example of obesity. I don’t know

what’s going on here but at home in Australia, this is, a friend of mine did

a study on fast food outlets and lower socio-economic status, and the

fast food outlets are concentrated in lower socio-economic areas. And,

that’s where the obesity epidemic is also concentrated. That didn’t

happen by accident.

And, certainly people may have this responsibility not to over-eat but

government also has a responsibility to be putting things, you know, to at

least be equitably providing putting that across the environment.

So, I mean in things like that government still has a responsibility to

create the environment in which I can fulfil my responsibility.

Unidentified Female: May I ask you, when you say responsibility as far

as mental health is concerned, what do you actually mean by that?

Because, you know, if a person’s got a mental health illness or is ill

they’re not doing anything wrong. I mean it is an illness. It’s like saying,


22

you know, someone who’s fallen on the floor and broke their leg and,

you know, they shouldn’t have been walking on that floor or something.

So, I’m not sure what you’re saying—what you’re trying to say there.

Can you explain that a bit?

Richard Dixon: I should point out I wasn’t endorsing that as an

acceptable point of view—absolutely not. I mean I’m just throwing it out

there – it is my experience that when you seek to assert a right the first

defence mechanism will be, what about your responsibilities in all of this.

So, please, don’t get me wrong, I wasn’t saying I think that’s ‘okay’ and I

wasn’t trying to send a message about that in terms of mental health or

anything else.

Maura McCallion: Okay, any other points on that or other reflections?

Bertie Atkinson: Hello. My name’s Bertie Atkinson I’m a member of

the Lower Shankill Residents' Voice and co-chair of the Girdwood

Regeneration Programme. On behalf of both of those organisations I’d

like to congratulate the group in their work that they are doing. And, we

hope that they continue with the work. We also hope that with regards

to the process that we are able—both the Girdwood and ourselves—

area able to monitor and gather the information that is required for

meaningful—what would you say—progress to help the mental health

issue within our country. And, we hope that the Ministers of this house

start listening to the people on the ground with the experience. Alright,

thank you.

Maura McCallion: Thank you. Any other comments—maybe adding to

that idea of trying to get people to listen? Maybe dealing with the power

issues that Helen raised in terms of trying to rebalance that—that might

be part of the issue about rights and responsibilities about duty bearers

and how they’re responsibility is to engage with individuals and make

sure that their participation is effective.

Willie Cosgrove: Hello. My name’s Willie Cosgrove. I run the

Survivors of Suicide Group in East Belfast. We work a bit different to

PIPS that we actually deal with families after a bereavement more than

looking at the reason for the bereavement.


23

I have been actively involved in this along with Gerald from, more or

less, the very start. It’s been a long, long haul dealing with government,

so it has. This gentleman behind me who spoke about the organisation.

This is just another quango. This is just another self elected parliament

to make decisions for us that they are making, not us. We don’t have

partici—I sit on the SSIP—I actually stopped going to the SSIP for the

same reasons. They don’t listen to the voices of the people. They don’t

want to listen to voices of people. They look down upon us as though

we’re something on the end of their foot. And this is going on and going

on and people need—as this group is doing—to start to make an

awareness.

We talk about people’s stories. For the last five years I’ve asked

government through the health boards for the—trying put together a

programme where people tell their stories. And the family stories—

there’s an awful lot. And one of the things that will come out very much

in the family stories is what is seen after the event. And, I’m putting that

together. I know it’s happening in Dublin and Cork at the moment, so it

is. And, I know it’s happening in parts of America and parts of Canada.

And, what they do is they get the people’s stories. They get some one—

some very clever. There’s a lot of clever people out there—to look and

take these stories to a—put the stories together to come up with a

common denominator. And, from that common denominator on suicides

especially although mental health would probably work in with it—that

common denominator is where the starting point is—not the finishing

point—the starting point.

So, I wish you success. I will be actually bringing my group into this

organisation—your groups will—and let’s hope it can move forward and

help resolve stuff that needs resolved out there. Thank you.

Maura McCallion: Thanks very much. Helen?

Helen Potts: I was just—I think for me because it does take so long and

it’s just really difficult and it goes on and on and round and round that it

is important to have a discussion about, well what—how can we get

some form of accountability mechanism going? Even if perhaps nothing

changes in the short term but actually get the information out there and

in the face of people to have a public discussion. I mean with respect to


24

human rights there’s accountability mechanisms, you know, and they

talk about going to court, they talk about if you have a human rights

commission, but there’s also one which is really important which is social

movements themselves. And, connected to that is media. And, when

we were talking last night about this – there was a case in South Africa,

the Treatment Action Campaign case which was all about the provision

of a drug to pregnant women to prevent transfer of HIV to the infant. It

was already approved and it was really, really cheap and the

government was going through this idea of saying, oh no, we need to

test it. For some reason, they just did not wish to roll it out across the

country and they could do.

What happened with that is there was a court case and people often

think that accountability is a court case but it isn’t always a court case. It

can be an important part. So what they had in the TAC case, as it’s

known, is they really had this huge social movement and they managed

to get all the organisations together to get a whole lot of civil society

momentum. And, then they used the legal case to get the matter into

court. And, then the information—just because you go to court it still

doesn’t mean the government is going to do anything because here you

had a constitutional court that came down with a decision that said the

government had to roll it out—that the government still wouldn’t roll it

out.

So, then that information fed back into the social—to the civil society

movement and then the media caught hold of it. And, so you had this

slow rolling sort of wave that was just building up and building up. And

it was all these mechanisms operating together. So, it’s that as well.

And maybe, you know, public interest litigation could be part of it.

Maura McCallion: I’m slightly conscious that I’ve over ran time so far...

Helen Potts: I’m sorry.

Maura McCallion: ...so I think maybe this is the time to hand over to

Sally who’s going to talk about the way forward and how other people

can be involved. And obviously a few of you have said you really will

want to be involved. So, it’s good to hear from Sally on this.


25

Sally Stitt: First, I want to thank you for coming here to hear our

experience today. As Stephanie said on the video, we want to make

sure that other groups don’t have the same experience as we did. So,

we have some idea of what others can do to help our group.

Firstly, I would like to thank the Minister. We welcomed his comments to

work with other groups to improve mental health services. But now,

almost a year after our first meeting, we would like to meet with him

again to see what our joint work has done for people on the ground. We

would like to talk about our participation indicators and our work to

implement the Card Before You Leave.

We want the lessons we have learnt to be used to ensure there’s a

better quality participation throughout the health service. We also want

to speak with him about new complaints system to make sure it is

capable of making a real change.

For the health committee we’d like you to continue the critical oversight

role you have played in so many ways. Firstly, by giving a presentation

as soon as possible from the Department of Health on the new

complaint system. We want to ensure the failures of the past are

addressed now.

Second, we would like you to receive regular reports and a formal

presentation about the effect—effectiveness, sorry about that, of the

Card Before You Leave implementation board and the use of our

participation indicators with it.

Third, we would like you to make sure the lessons from our group and

others are mainstreamed to enter the health policy.

We can see a role for other too. The Finance Committee—many work to

look at whether the Card Before You Leave system saves money. Or,

how much would be saved by an efficient complaints system that

delivers real learning.


26

We also describe some of the ways local organisations and MLA’s can

get involved in the booklet in your packs. We have been lucky to have

the support of many of you so far in our work. We know how powerful it

is so we want to see it continue. Thank you.

[Applause]

Maura McCallion: Okay. Last closing sentences—just to thank

everyone for coming. I really appreciate you coming along and giving us

your time. You do get awarded with a lunch at the back which,

hopefully, is coming now.

Before you do that could you think about filling in the evaluation form? It

just gives the PPRP project some feedback on the event.

Also, I just want to finish obviously by thanking everyone who

contributed. Obviously Sally has done that to some extent but just

particularly to congratulate the two groups on the work they’re doing and

to wish them all the best in taking that forward because I know it will take

a lot of determination and hard work. And, also to congratulate the staff

and everyone involved in the PPRP project.

And, obviously, I think there is some indication at that back—but I wasn’t

sure [laughs] what I was supposed to be saying. But, in terms of

finalising then just to thank Alex Easton for hosting the event. We really

appreciate him doing that because we couldn’t be here without him. So,

thanks for that and hopefully see you all again at some point to see how

the indicators and measurement is progressing.

Thank you.

[Applause]

Tape 1, Side 2 ENDS: From Pillar to Post, PPR

Documents

From Pillar to Post May 2009: Linking Meaningful Participation to Improved Service Delivery