Category Archives: Citizen’s voice

How patients and members of the public are involved in appraising new medicines

I recently attended a meeting of the Patient and Public Interest Group (PAPIG), which is made up of patients, carers, patient advocates and third sector organisations. The group feeds their views via the All Wales Therapeutics and Toxicology Group (AWTTC), who provide professional, technical and administrative support to the All Wales Medicines Strategy Group (AWMSG). One of the roles of AWMSG is to advise Welsh Government whether new medicines should be available for use in NHS Wales.

New medicines are evaluated against currently available medicines to compare:

  • how well they work,
  • how cost-effective they are,
  • which patients they would benefit the most.

AWMSG is committed to involving patients, carers and members of the public when evaluating new medicines. During the appraisal process, the patient and carer view is critical because clinical data alone can’t quantify a patient experience – the patient needn’t be an expert in medicine in order to be involved in this process. Most of the questions asked of them during the appraisal process are related to their condition and how it affects their day to day life.

The patients and carers who contribute may not be scientifically or clinically trained, but they certainly hold invaluable knowledge about the impact that their condition has on their and their families’ lives. Other stakeholders such as pharmacists, academics, clinicians and industry representatives are also involved throughout the process. The patients and members of the public are found through patient advocates and third sector organisations that are represented on Patient and Public Interest Group. AWTTC also search for other patient groups in order to reach those who are not currently engaged in this process.

It’s worth noting that other bodies in the UK who appraise new medicines do not take responses from individual patients or members of the public, but AWMSG do.

Patients and members of the public who are involved are known as lay-members. The dictionary definition of a lay-member is “A person who does not have specialised or professional knowledge of a subject.”  So if this is what a lay-member doesn’t have, what about the skills that they do have?

At the meeting, we completed a participatory exercise to examine ‘what skills, experience, qualities and attributes does a lay member have?’

Here’s some of what we came up with:

What does a patient representative look like? Skills and experience

  • Getting the point across
  • Analytical ability
  • Good communicator
  • Good understanding and experience of health conditions
  • Good listener

Qualities and attributes

  • Confident
  • Sympathetic / empathetic
  • Caring
  • Being able to stay within their remit

Completing this visual exercise was very a thought-provoking and interesting way of looking at the lay-member role.

What participatory tools have you used to analyse the roles of citizens involved in your consultation process?

Sarah

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Participation is key to challenging discrimination

At the All Wales Participation Network this year, Joe Powell set the tone with a powerful opening speech about the importance of full participation in society for people with learning disabilities. Joe was diagnosed with Asperger’s Syndrome in 1996 and has spent 11 years in social care. He is now National Director of All Wales People First; a group uniting the voices of self-advocacy groups in Wales. Joe drew on his first hand experience of fighting to leave a system that was determined to see him purely as a service-user, someone needing assistance, and not as someone who also had a lot to offer to his community.

Joe began his talk by outlining ‘The good life model’; values that are important to the people with learning disabilities Joe has spoken to. These values included ‘loving and caring relationships’, the choice that is derived from having some wealth (implicitly this includes control over one’s financial assets), a ‘contributing place in the World’ and ‘a home of my own’. The first thing that struck me was how similar they are to what a non-learning disabled person wants from their own life – these values seemed universal, as opposed to learning-disability specific. All of the values were, to my mind, underpinned by a balance between personal safety and security on one hand and on the other a sense of being able to take agency over one’s own life and further, contribute something to the lives of others. Isn’t this what everyone wants form their lives?

Picture of Joe Powell presenting at Participation Cymru event.

Many people with learning disabilities also have a visual impairment and some of these people were not taught to read at school. Simple measures such as offering easy-read information and audio format can make it possible for people with learning disabilities to access information without having to rely on a friend or carer to read it to them. This allows people to maintain a sense of independence and dignity, rather than become institutionalised, especially where the information concerned is of a private nature.

Given that what people with learning disabilities want is so similar to what the wider population aspire to, one could be forgiven for assuming that these desires are readily accommodated in learning-disability care and are empathised with by society. However, Joe explained that in reality people with learning disabilities are effectively ‘retired at the age of eighteen years’; rarely in employment and often even excluded from volunteering. The mentality behind such sidelining appears to be that anyone with a learning disability is a ‘service user’ and therefore in need of assistance. Whilst many people with learning disabilities are indeed users of services, this does not mean that they are not capable and eager to give assistance in their communities and contribute meaningfully not only to their own lives, but also to the lives of others.

History of people learning disabilities

This restriction in participation is not only a massive loss in terms of potential volunteering and employment opportunities but also completely contrary to the principles of the All Wales Strategy 1983. The strategy stipulates that people with learning disabilities have the right to choose their own patterns of life within their communities and to access to professional services where additional help is necessary for them to achieve this.

People with learning disabilities largely DO want to work and to volunteer, said Joe, and we need to make more of an effort to accommodate their needs in theses capacities. Prejudice stems from ignorance and when people with learning disabilities are visible in useful roles, this will make it harder to stereotype them as a burden and give credibility to their voices.

Joe’s closing remark, before inviting questions from the floor, was that participation for people with learning disabilities must be realistic and never tokenistic. We must make it possible for people with learning disabilities to enter the workforce with reasonable adjustments made if necessary only when they are capable of fulfilling that role.

If you would like to hear more from Joe Powell, you can keep up with Joe’s Soapbox.

The ‘Storify’ for the day, including Joe’s presentation, other resources from the event as well as delegate’s contributions via social media is available here.

– Non

The General Election – having your say and addressing electoral inequality

PollingStationWalesUK

Elections are the primary way for us to express our reactions to the performance of the government. An election is a tool of communication between the representatives and us: the people they represent.

Apparently, voters get the government they deserve. This implies that active participation by the electorate on polling day will result in us getting a government which truly represents its people but most of us will argue that the current coalition government doesn’t match that assumption. Only 65.1% of the electorate voted in the 2010 general election and it’s fairly obvious that more people voting could have resulted in an entirely different outcome.

Our participation in elections is without doubt an important responsibility and a significant symbol of our democracy and participation in public affairs.

Marking your ‘X’ on the ballot paper may seem like a small thing to do, we can of course participate in politics and public services in many different ways and not just at election time. However, the right to vote (that people have fought and died for) symbolises democracy and fair culture and I believe it is our duty to ourselves to have our voices heard in this process.

The way that candidates campaign and communicate with us has drastically changed. Paid-for political advertising is banned on television and radio in the UK, so a typical election campaign (in my mind) consists of hopeful candidates knocking on doors and shaking hands while proudly wearing shiny coloured rosettes and covering our doormats in glossy literature telling me that “the other candidate wants to sell the NHS” or “vote for him and he will double your taxes”.

With the prevalence and availability of modern technology, social media and digital communications are at the heart of this year’s general election campaign.

As paying for adverts of TV is not allowed, candidates are allowed to pay for political adverts and videos online via social media, potentially reaching an audience of millions and Ofcom do not regulate what is posted on these platforms. This provides an opportunity for much broader and more authentic, genuine and honest conversations to take place between the candidates and the voters. Facebook even has its own checklist for political candidates to refer to when posting updates – but are they using this to its best potential?

The evolution of social platforms between 2010 and 2015

5 years ago, the political parties were newly launching themselves on Facebook, getting their party leaders online and ensuring they had some sort of ‘presence’. Now it’s 2015 and social media has evolved so much in the last 5 years and so has the way that we use it.

Local candidates and parties should by now be using social media as a platform to have genuine conversations and engage with people so their presence online feels authentic and less like they’re just using a new and trendy tool.

Politicians traditionally use their public facing profile to get their message across and inform the public what they’re promising to change if they get elected. Candidates are now also using the platform to ask people for their opinion.

Hidden audiences and the ability to influence

The number of likes on a political candidate’s Facebook page is irrelevant when Facebook’s mighty algorithm allows networking and linking interests together; friends of friends of friends are being influenced by what appears on their newsfeed.

Obviously, some audiences are much less responsive to this method of campaigning. Some people don’t use the internet at all for example: television news and printed newspapers are still the most important news sources for certain audiences.

The role of the social networking movement in increasing electoral participation is not as simple as it may seem and ‘getting it right’ is never an exact science. Browsing through some candidates Facebook and Twitter pages – I’m surprised to see that most updates only point out the flaws in the opposition’s policies the potential for positive campaigning and conversations could be missed!

Addressing electoral inequality

The Institute for Public Policy Research (IPPR) have recently launched a report suggesting that voting should be compulsory for the first election after each person turns 18. They accurately report that ‘the working class and the young have less input into political decision-making processes‘ in comparison to older and more affluent groups of people and propose that forced participation may be the answer to this inequality.

The main issue with this is that you can’t force people to take an interest; you can’t force people to care about something if they don’t. Compulsory voting would be nothing more than an illusion of democracy – how can it be democratic if it’s forced? It can’t! If compulsory voting was introduced I can’t help but imagine a rise in the number of spoiled ballot papers or people being forced into voting for something with little information resulting in a system which is even less representative than it is now.

Surely it is also still important to monitor any disinterest and dissatisfaction. There are many very justifiable reasons for choosing not to vote; it could be that someone feels as if they’re not well enough informed, or that none of the candidates or parties accurately represent their views and some people are just not interested. It is important to monitor lack of activity at the polls and find out why this is happening instead of just forcing everyone to participate.

Principle #2 of the National Principles for Public Engagement is “Encourage and enable everyone affected to be involved, if they so choose.” Those last four words are central to the engagement process – giving people the option to be involved.

I will be voting in this General Election because I want to and it’s my choice to, as I mentioned earlier I feel that it is my duty to be involved but I respect and understand the views of those who don’t want to vote. No one should be forced into democracy – that would be a contradiction!

So, participating in elections is an important responsibility but our vote is not our only voice or is it our only opportunity to be involved in politics. Everyone has a right to be listened to and those in power need to listen to us, however we choose to be heard.

– Sarah

If you’re 16 or 17 years old – you may not be able to vote this time but you can still register. The National Assembly for Wales’ elections takes place in May 2016.

Participatory Research with Carers

This guest blog post was written by Rachel Waters from Newport Community Counselling Service.

University of South Wales logoNewport Community Counselling Service (NCCS) is based at The University of South Wales. The service offers free counselling to local people at venues across Newport and Caerleon.

NCCS also carries out research into counselling and in this blog I will focus on our participatory research with carers.  I’ve reflected on some challenging aspects of the work and included a few tips to help others involved in participatory research.

What is Participatory Research (PR)?

Participatory research involves people in research as co-researchers not just participants; knowledge is co-produced through collaboration between community research partners, and research should lead to action to benefit the community under study.

Participatory approaches have a distinct value position ‘involving … sharing power with those usually the objects of research, and to working for progressive social change’ (Durham Community Research Team, 2011, pg.4)

Finding our Co-researchers

Our first step was to engage carers’ organisations in the Newport area.

This was initially difficult – many organisations were supportive and wanted to be ‘kept informed’, but did not have capacity to get involved.  Explaining the nature of participatory research was tricky– often I was asked about the research questions and the time commitment needed.  I explained that co-researchers would decide on research questions and that commitment was flexible depending on organisational interests and capacity. The uncertainty inherent in participatory research approaches makes it difficult to predict in any detail what the project will involve, and this makes it harder for organisations to be able to commit to involvement.

Despite these challenges we eventually gained the interest and commitment of a number of key local organisations and individuals, who agreed to become co-researchers.

Our co-researchers

Our co-researchers are: Newport Carers’ Forum, Hafal (Newport), Newport City Council Carer’s Development officer and Newport Council Adult Review Team.

Participatoryresearch

  • Tip…Existing positive relationships with organisations and individuals can make this first step much easier.
  • Tip…   Prepare a succinct and accessible explanation of participatory research but be prepared for questions about the details of the project.

The next task was to work together to decide on our research question.

Deciding what to research

Ideally in participatory research, community co-researchers choose the research topic and questions, however, our particular context as a University based counselling service required that we focus on counselling.  We made our co-researchers aware of this from the start. 

A review of the NCCS counselling service revealed that not many carers were using our service and those who were often didn’t stay for long.  This was worrying as we know from our co-researchers and from research that there are lots of carers in this area, that caring can lead to stress, depression and anxiety, and that counselling can be helpful to carers.  We shared this information with our co-researchers and the group decided to explore this discrepancy with the aim of improving the service NCCS offers to carers and sharing what we find with other counselling and carers organisations.

Discussion with our co-researchers revealed that carers tend to focus on the cared for person whilst neglecting their own needs.  This was supported in the research literature.  The group wondered if carers view counselling as a way of helping them to maintain caring and underestimate how helpful it might be for addressing their own needs.

The group came up with the following objectives:

  • To identify carers expectations of the process and potential outcomes of counselling
  • To identify whether and how carers think that counselling could be helpful to them, particularly in relation to the impact of caring on their emotional well-being
  • To identify barriers to carers accessing counselling services
  • To work collaboratively and as far as practicable, equitably with local community member

Although reading this summary, it might appear that our research objectives fell quickly and seamlessly into place, in reality the process of integrating academic and community based knowledge was time consuming and awkward.  We reviewed the literature and listened to our community partners at the same time – in hindsight, listening first and then reviewing literature on the topics raised may have facilitated the process.

  • Tip…    Consider in advance whether and how you will integrate academic knowledge of the topic into the development of research objectives or questions.

Developing our study materials

We decided as a group to use semi structured interviews to gain information from carers, and set about producing our study materials – publicity for recruiting participants, interview schedule, etc.

Ideally in participatory research all materials would be produced as a group from scratch, however, pragmatic concerns meant that we decided the academic partners would develop the materials which would then be reviewed and edited by the group using their experiential and local knowledge.

The review process resulted in several changes to our materials such as clarifying the term ‘carer’ – which our co-researchers informed us was used locally to refer to paid as well as unpaid carers.  We also adjusted the interview schedule to suit those caring for more than one person – a situation which our co-researchers demonstrated was far more common than we had anticipated.

Research Outcomes

One of the important aspects of participatory research is that it should lead to positive action to benefit the community being researched – in our case, carers in Gwent.   What action we take depends on the results of our research however, we have various ideas in mind which include developing specialist training for counsellors working with carers and /or producing accessible information for carers about counselling.

We are currently recruiting carers to be interviewed for our research.  If you know of any unpaid carer, over 18 in Gwent who might be interested please forward my contact details:

Rachel Waters (Research Assistant)
Newport Community Counselling Service
Tel: 01633 435282
E-mail: Rachel.Waters2@southwales.ac.uk

Any views or opinions presented in this blog are solely those of the author and do not necessarily represent those of the University of South Wales or community co-researchers.

References

Durham Community Research Team (2011) Community-based participatory research: Ethical challenges.  Available at: https://www.dur.ac.uk/resources/beacon/CCDiscussionPapertemplateCBPRBanksetal7Nov2011.pdf (Accessed 2 May 2014)

Legislation

Participation Cymru recently attended a workshop at the Older People’s Commissioner for Wales offices (OPCW). The workshop looked at a range of scenarios that affect older people and how the new Social Services and Well Being (Wales) Bill would impact on their situation, would it make it better, worse or have no impact?

ImageThe majority of people at the workshop were in agreement that the new Bill was definitely well-intentioned but when you try to apply a piece of legislation like this one to someone’s life, it’s very difficult to see how exactly it will help them.

This Bill, like many others, is very long and the Explanatory Memorandum that accompanies it is even longer. In fact many people I’ve spoken with about it have said that it ‘weighed them down’ (in more ways than one!). The workshop made me think about legislation in the wider sense and if law-making compares to citizen empowerment. Technically, it doesn’t.

So instead, is legislation there to protect people? In a sense: yes. The Social Services and Well-Being Bill aims to protect social service users and carers, ensuring that their needs are met and their voice is heard. Other pieces of legislation in Wales and the UK are also there to protect people, our property or possessions.Image

This leads to a philosophical question: do we need protection before we can feel empowered? Does this protection have to be legal? Or should we instead rely on the common sense of service providers to offer the required service no-matter-what, eliminating the need for a lengthy legal document?

No person who we’ve spoken to has ever said that what they really want or need is new piece of legislation”.

I completely agree – the people of Wales need access to good public services that meet their needs, they don’t need legislation to tell a service provider what they should be doing anyway.

A simple way of putting this point across is: The reason that I don’t go out tomorrow and rob a bank is because I think stealing is immoral and selfish, not because I want to avoid punishment or because there is a law that says I shouldn’t. I am empowered by my own decision.

–         Sarah

Why participation is brilliant

This blog post is my last piece of work for Participation Cymru, and I just want to say a big thank you to everyone I’ve worked with over the last three years.  My colleagues at Participation Cymru are incredibly committed individuals. It’s been inspiring watching my fellow staff work their socks off, which as a small team working on a national basis has never been anything less than vital.

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Wales Council for Voluntary Action hosts our project, and I’ve been based here even longer (eight years to the month). I never thought I’d end up training and facilitating when I started working here as an Administrative Assistant on the Helpdesk.

Whilst working for Participation Cymru I’ve met some fantastic staff at many a public service organisation, who are determined to open up decision making where they work. I’ve met so many great people from a variety of fields around Wales that are passionate about ensuring that public services are both transparent and accountable.

On the other side of the coin, I’ve really enjoyed the practical work we’ve done with citizens around Wales. I’ve met so many committed people who have been more than ready to give their time to try and make public services and society in general better. It’s for this reason that the most memorable piece of work I’ve been part of has been the Citizen Panel for Social Services in Wales.

Involve have written a great pamphlet on participation called From Fairy Tale to Reality. The pamphlet debunks myths about why participation isn’t practical, including that:

  • engagement is too expensive
  • citizen’s aren’t up to it
  • engagement only works for easy issues
  • citizen power is a floodgate we should avoid at all costs
  • citizens don’t want to be involved, they just want good service

When I watched members of the panel online giving evidence to the National Assembly for Wales’ Health and Social Care committee on 16 May, the panel members dispel these myths one by one – they speak about direct payments (which could make services cheaper as they’re tailored to people’s needs), they have awareness around the issues of the service they access, they dissect a very complex and weighty bill, they provide considered and detailed responses and they very much want their voices to be heard.

Even if you gave me a list of points that the panel covered, I wouldn’t have the direct experience to truly dissect the points and flaws half as effectively as they do, as they encounter these on a day to day basis. I can definitely say that I wouldn’t be able to speak about these points as movingly or as passionately as the panel does.

When I watched the panel give evidence it really hit home how public services can only truly meet people’s needs when we ask people what their needs are, and that we then work with them to change public services.

–      Dyfrig

How children and young people are feeding in to the Citizen’s Panel for Social Services in Wales

The second round of meetings of the Citizen Panel for Social Services in Wales have now taken place. There are adult panels in the North, South East and South West Wales, and we’re also working with children and young people around Wales who are affected by the way that social services are delivered.

The views of children and young people are being fed in by Beckii Parnham, a young carer from Torfaen, who originally applied to be a member of the panel. We’re so lucky to have Beckii working with us – Beckii cares for her mother, her brother and her sister, she’s a representative for Funky Dragon, she helps run a young carer’s group, has done work experience with the social services team in her area and is now working with us to feed in children and young people’s views in to the social services partnership forum. I feel positively lazy when I hear about everything she’s up to!

I asked Beckii why she wanted to be on the panel, and she said “I wanted to be on the panel because of the experiences I’ve had myself and the experiences that I want to share. I’ve got experience of actually working alongside Social Services and I’ve got experience of receiving the services”. You can also hear Beckii talk more about this and the work we did with Torfaen Youth Forum in the AudioBoo below, where we met with some of the young people in the above video (which includes Beckii, who’s the one the left of the still photo at the start of the video).

We’ve visited Wrexham Young Person’s Care Council, Crossroads Care Swansea Neath Port Talbot and Crossroads Care Cwm Taf, Whizz-Kidz in Bangor, Voices From Care Cymru, Eat Carrots Be Safe From Elephants (which is an amazing name!), and we’ll be visiting a few more in the coming months. We’ll be making sure that we visit groups around Wales from all the protected characteristics of the Equality Act to ensure that we hear from as wide a range of young people as possible.

There are some great tools for working with children and young people out there. We have some helpful publications available at the bottom of this page on our website. You can hear about the latest work that’s being undertaken with young people in Wales by joining the Participation Workers’ Network for Wales, Save the Children Cymru’s Participation Unit have produced some great Blast Off! Guides, and you can also find lots of websites, training and resources at http://www.participationhub.org.uk.

– Dyfrig