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

Transcribed by Luann Johnson, August 2009

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 decisionmaking.

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 3

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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 4

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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 6

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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 7

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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 predecided 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. have to change.

Their behaviour will

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 13

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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 14

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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 15

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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 17

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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 19

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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 20

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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, 21

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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.

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Transcribed by Luann Johnson, August 2009

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 23

Transcribed by Luann Johnson, August 2009

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.

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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.

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Transcribed by Luann Johnson, August 2009

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

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