Tag Archives: wales

Networking in nature

In the Participation Cymru team we love spending time outdoors and the opportunity of holding a network in the open air is an idea we’ve thrown around for a while.

So, just after the early May Bank Holiday weekend we held our first ever practitioner network event that took place in nature with the help of Tom Moses from Pembrokeshire Coast National Park. Here is a summary what happened:

Firstly, the weather was absolutely glorious!

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Not even a hint of rain

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Tom started the fire earlier that morning, so hot tea and coffee was served upon arrival.

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Jill Simpson, from Pembrokeshire Coast National Park showed us this beautiful, tactile piece of community made woodland furniture (it’s so much more than just a bench) that was designed and created by local young people.

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Matt, a volunteer for Pembrokeshire Coast took us for a walk along a bridleway where we learned map reading and basic orienteering skills.

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Along the way we met some inquisitive young cattle who were very keen to say hello

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It’s possible to make tea from various plants, roots and fungi found in the woodland (but never eat anything you’ve picked in the wild unless you’re absolutely sure that it’s safe!)

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Our mid-morning snack: warm bread fresh from a Dutch oven with freshly picked wild garlic.

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We used a participatory voting method – ‘pebble voting’ to decide which of the teas tasted the best (dandelion seemed to be the most popular).

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It wasn’t just tea-testing, cows and pretty walks however; the topic of the networking meeting was behaviour change. Participation Cymru posed the question for organisations who are implementing the National Principles for Public Engagement in Wales: what behaviour change has to take place within an organisation? Answers on a magnetic whiteboard…

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We recently published a checklist of implementation for the National Principles with questions relating to each principle. Has your organisation had to change its behaviour when engaging? Have you had to try to influence the behaviour of others in order to make improvements? Join the conversation but leaving a comment below.

Finally…leave (almost) no trace

This water soluble air-drying clay is an excellent way for people to ‘leave their mark’ in nature without causing any damage to the environment. We took all of our rubbish with us.

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Many thanks to Tom, Jill and Matt from Pembrokeshire Park National Park Authority who helped make this event a success.

Are you thinking of holding a community event or meeting outdoors in Wales? If you are, please tell us so we can help you promote it.

Keep checking our website for details of future network events.

Our ‘All Wales Network event’ entitled ‘Engaging with diverse communities’ is taking place in Llandrindod Wells on 14th July it’s FREE to attend!

Sarah

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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

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.

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  • 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)

October regional participation networks: Accessible information and technology

Should we endeavour to achieve optimum results or should we simply try our best?

We’ve just held the Regional Network Events and the theme this time round was ‘Accessible information and technology’.

BookWe started each session with an ice-breaker exercise to introduce the theme, half of the participants were given a ‘jargon card’ and the other half given an ‘easy-read card’. Each card contained just one word and the aim of the game was to walk around the room and find the person with the word card which had the same meaning as yours. For example if you had a jargon card which said ‘participate’ then you would be partnered with the person who had an easy-read card saying ‘take part’ and then introduce each other. Other examples of words we used in this icebreaker were endeavour (try), discontinued (finished) and collaborate (work together). We took some of these words from the Plain English Campaign website.

This icebreaker worked well to get people chatting to each other and the feedback we had was positive. No one had used this icebreaker before but some participants had previously played Buzzword Bingo at jargon-heavy meetings.

In South East Wales the event was held in Ystrad Mynach. Barod CIC gave a presentation which outlined why it is important to provide clear information in an accessible format. They introduced the group to the services that Barod provide such as translating documents into Easy Read and/or Everyday English,  they also offer training packages to organisations with the aim to train staff to produce easy-read documents. All of Barod’s work is checked and proofread by people with learning disabilities. Sam from Learning Disability Wales also gave an introduction to the Clear and Easy Guide which is a comprehensive guide for organisations who want to make their information more accessible. The guide comes with an interactive DVD and is free for the voluntary and public sectors (limited to one per organisation). Contact Learning Disability Wales for more information.

In South West Wales we held the event in Felinfoel, Llanelli. Andrew Hubbard from the pilot Citizen Panel for Social Services and the Swansea Association of Independent Living focussed his session on Accessible Technology, making participants aware of how screen-reader software works for visually impaired people. Andrew ran a group exercise which explored a range of different scenarios that disabled people face when accessing everyday information such as job vacancies, bus/train times and advertisements. The exercise was then followed up by a group discussion. Barod CIC were also kind enough to give an introduction to the Clear & Easy guide again (for the second day in a row!)

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After a short break, our training and development officer Siobhan demonstrated a tried and tested participative technique that we’ve used before and has always been very successful – the Hot Air Balloon from Dynamix’s book Spice it Up! This exercise encouraged participants to think about the way their own organisations provided information and how they could make it more accessible. Participants had to think of what was holding them back, who needed to be ‘on board’ and what was needed in order to really ‘make it fly’.

Funding and time constraints were often mentioned as something which was holding them back. One participant came up with the idea that a universal culture change was needed for more accessible information to be regularly available.

We then broke up into small groups to hear from participants about work that they are undertaking, good practice they have encountered or issues they are having. We heard about work happening in TPAS Cymru who are holding an event coming up in November on Public Engagement. We also heard that Communities First Cluster in Barry are holding IT drop-in sessions and delivering basic IT training on how to use the internet. There is also some excellent work being done by South Wales Police who have been doing engagement work with young people – finding out what they think of their local neighbourhood and which areas they feel safe or unsafe in. Carmarthenshire County Council have recently held a budget consultation and used a budget simulator which sounds like a great way to get people involved in budgeting.

Our North Wales event was in Llandudno Junction on a windy and rainy day that we’re so familiar with in Wales! We heard from two members of the pilot Citizen Panel for Social Services; Jennie and Beth Lewis. Beth started by telling the group about her life; she is 24 years old and has a learning disability, she lives in her own flat and has a job, she likes cooking and wants to do more things by herself. She can read very well but doesn’t always understand what the words mean so prefers shorter sentences with pictures. Beth and her mum, Jennie showed us lots of examples of information that were sent to her by post.  The participants were set  a task to translate a letter that had been sent to Beth into an easy-read format in small groups (which everyone found very difficult – ironically the letter is actually about a scheme specifically for disabled people, including people with learning disabilities) Beth walked around the room to read and check what people had written.

jennie-bethWe asked the groups to discuss how they would put Jennie and Beth’s thought provoking presentation into practice by thinking about how they could make the information their own organisations’ produce more accessible. There was certainly a lot to think about and some really interesting discussions were taking place. In particular someone said a big barrier is ‘legal speak’ and certain documents or contracts have to use particular wording and a way to overcome this is to put an easy read explanation alongside or underneath a statement, explaining what it says with a picture if necessary.

Overall this round of events were successful with a very interesting theme and all of our guests in the three areas did an excellent job at presenting. We’re very grateful to Barod, Andrew Hubbard and his assistant Bev, Jennie and Beth for helping us with these networks. Thanks to everyone for coming!

Our next round of network events will be held in February 2014, more details can be found on our website here. Booking early is essential as spaces are limited to 20 per event and they do fill up quickly! Don’t miss out!

–          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

Wayne Jepson reflects on our work and being a member of our Advisory Panel

This is the final video in a series of three that we conducted with Participation Cymru Advisory Panel members, following previous interviews with both Derek Walker of the Wales Co-operative Centre and Margaret Peters of the Countryside Council for Wales (which is now part of Natural Resources Wales). We filmed these as part of our Evaluation Framework, which helps us to ensure that what we do is meeting the needs of people and organisations who access our services.

Wayne Jepson on Participation Cymru / Wayne Jepson ar Gyfranogaeth Cymru from Participation Cymru on Vimeo.

Wayne is a long serving member of the Advisory Panel. He has represented NLIAH (the National Leadership and Innovation Agency for Healthcare, which has now closed, with its functions transferred to the Welsh Government and NHS Wales) for a few years now, and he has been involved in commissioning work from us as a project as well as providing a steer for our work as a member of the Advisory Panel.

When I asked Wayne to tell me how he saw the role of Participation Cymru’s Advisory Panel he said “I think the Advisory Panel is a critical element of Patricipation Cymru’s development. I think it provides a forum to inform and influence decisions that are being made by Participation Cymru and about Participation Cymru and the wider public sector. For me, the Advisory Panel not only acts as a programme board might for a project, but it also is there as that check and balance for Participation Cymru. I think that because of the make-up of the Advisory Panel – people are from a range of different organisations and different sectors – it brings a wealth of experience and knowledge to the table that can only help Participation Cymru in developing and moving forward”.

One of the National Principles for Public Engagement in Wales is to “Work with relevant partner organisations”. NLIAH firmly put this into action in their role as an Advisory Panel member by commissioning training from us in partnership with the Welsh Local Government Association. This approach ensured the best possible use of resources, but also gave added value to the training as attendees were given the opportunity to network and to learn from each other’s experiences.

NLIAH produced a range of useful resources on improving health services, including really useful guidance on involving adult NHS service users and carers, which clearly shows that listening to the voice of patients and the public is vital in order to ensure the improvement of NHS services in Wales.

– 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