What has happened since the final workshop?

At the final workshop the group identified that the main output they wanted to develop and integrate into service provision was information resources for GPs and patients about mild heart failure. In addition, a local asset map is being developed by the group and two other ideas are still emerging: creating an ‘I am Heart Aware’ campaign and a one day event for NHS staff and the wider public at Wishaw Hospital on 6th May 2015. The event will showcase this project and will engage delegates in discussion about how this work can be built on in the future. The group is continuing to meet to develop these outputs and ideas.

Information sources for GPs and patients

The group created a two-page information sheet about useful resources for people with heart failure and a two page FAQ  leaflet with information about heart failure. Designed to be used by GPs, patients or anyone with an interest, these have been circulated to Lanarkshire GPs, North Lanarkshire Council and third sector organisations.
The group also created a short powerpoint presentation from the information sheet, having been informed that this is an effective way of capturing the attention of patients in GPs’ waiting rooms where TV screens are used to provide health information.
The slide set was well received by GPs.

Local asset map

An interactive map of useful groups, organisations and resources in the North Lanarkshire area is being developed by North Lanarkshire Council. However, due to staff illness the output has not yet been completed. The council is committed to publishing and maintaining the map online, and some of the members of the KiP group will assist with its development.

Feedback, planning and celebration!

photo 1-2

*As Kerry (Project Manager on this project) had now gone on maternity leave I (Gayle) facilitated this session with Rikke*

Since the last meeting, the group had met to develop and test their ideas. In this session we discussed what people had done and what they planned to do next. As this was the final session, we also spent some time gathering reflections from the group about their experiences of taking part, and celebrating our achievements so far.  This was our programme for the day.

Our goals for the day were:

  • Working groups to provide progress reports on improvement ideas
  • Action planning for testing out improvement ideas
  • Measuring impact of improvement ideas
  • Agree next steps

Attendance

Ten people attended, there was one apology, one person was unwell, and one person was only able to make the end of the session.

Connecting up

As everyone knew each other well by this point, we moved straight into giving the group space to reconnect with one another. Each group discussed what they had been doing, what they had found out and were thinking in relation to their improvement ideas. At the end of this conversation we asked each group to share a reflection of their work and learning to the wider group.  We provided the following questions to help people formulate their feedback:

  • What happened?
  • What worked well and why?
  • What didn’t work and why?
  • What is your group’s plan for future?

We also gave groups a retrospective evaluation sheet they could use to guide their conversation.

Progress reports from each working group

Since the last meeting people had met up to take their actions forward and feedback to others. Communication amongst the group had increased and people reported feeling more involved in the development process.

Group 1: ‘Organisations and services (front line staff) to be aware/comfortable talking about heart failure’

Plans from this group involved developing a local campaign to raise awareness, particularly amongst local businesses eg pharmacies, supermarkets, leisure centres. The idea had not progressed due to illness within the group. However, there were plans amongst the group to continue working on this idea along with the ideas from group 4.

Group 2 and 3: ‘Education and awareness about early stage heart failure for GPs and their patients’

Group 2 and 3 merged so that information resources could be created, that would support the education and awareness of GPs and also people who may have symptoms, about the early stages of heart failure. As a consequence, everyone in the group was involved in the development of this idea.

Activity had involved sharing information about the symptoms of early stage heart failure and about self-management after receiving this diagnosis.  A leaflet was produced that could be given to GPs to share with relevant patients. The information was also developed as a powerpoint presentation that could be shown on the TV screens in GP surgeries and used as a screen saver on GPs’ computers. A draft of the information sheet had been sent to local GPs and the response rate for feedback was over 80%.

Here are links to the resources

GP screens – Heart Failure-2

Patient information leaflet v3-2

Heart Failure FAQs – v3-2

Other ideas from the group were: to include the information they had created on the health information website patient.co.uk; to create a poster that signposts to further information; to continue engagement with the GP practices to further develop the information; and to ask the local authority, NHS and British Heart Foundation to ‘rubber stamp’ this resource.

Group 4: ‘Local online information for people with heart failure’

The responsibility for this idea lay with one of the members of the group who was unwell. Therefore there had been no progress since the last meeting. However, a colleague from the local authority had decided to take on the piece of work and liaise with the group regarding its development.

 

Developing an evaluation strategy

Group 2 and 3: ‘Education and awareness about early stage heart failure for GPs and their patients’

Outputs for Group 2 and 3 were the information and resources they had developed.  They planned to share information widely through the Living It Up website, making connections with Active Scotland, contributing to the Chest Heart and Stroke newsletter and uploading information on the ALISS website.

The outcomes they wanted to achieve were: a greater awareness of the early stages heart failure, a reduction of stigma associated with this condition, people being able to discuss heart failure with their GP when concerned about their health, GPs being more aware of this condition and people knowing where to access information about heart failure.

We talked about the difficulties in measuring these outcomes. Challenges included that the chosen outcomes were preventative in nature and would happen across a local area or within a wide heart failure community. However, the group felt that the direct contact they now had with GP surgeries meant that they would be able to develop more concrete outcomes measures as their information was used.

As this was the main idea that was discussed at this meeting this approach was developed by the whole group.

 

Discussing how these ideas will be developed after this final IRISS hosted meeting

‘I’d like to see it [the group] continue, think it [the ideas] will grow legs’ (member of the group)

‘I’m worried I’ve not got the time to commit to this’ (member of the group)

People recognised there were several aspects they needed to be clear about, before discussing next steps.  This would enable them to discuss whether they were able to continue to work together, and if so how this would work after this final IRISS hosted meeting. The majority of people in the group said they did want to continue to advance and test the ideas they had developed. They discussed: people’s time/capacity; the membership of the group; the type of meetings they would have and how they would communicate; developing a clear understanding of the purpose of the group; and the group’s focus and anticipated outcomes of their work. The image below summarises this conversation and the decisions the group made.

photo 2-5

 

Individual reflections about the project

In the afternoon we moved from a focus on idea development, to reflect on people’s experiences of taking part in this project. As the project took place over a year, we started by asking people to reflect on their thoughts throughout the process. We did this by printing out each of the blog posts which recorded the activity at each session and posted them on the wall so people could review them and recollect their thoughts.

photo

photo 3

Reflecting on the KiP process

Group reflections about the project

After people had taken time to reflect on the work they had done and their experience of KiP we sat together in a circle and talked about:

  1. What do you think about the work you’ve been involved in?
  2. What has your experience been like?
  3. What have you learned?
  4. If you were to do this work again what would you do differently?
  5. What may you do differently as a result of begin involved in this project?

This group reflection offered people the opportunity to share their thoughts with others in the group, to spark  ideas and conversations. We recorded what people said and have combined this evidence with people’s individual reflections at follow up meetings to support the evaluation of this work.

Celebration!

We concluded this meeting with a party, cake, music and a slideshow of all of the photographs taken during the project to congratulate everyone for all their work.

photo 4-2

 

Final group photo

 

Feedback on ideas and further action planning

 

Screen Shot 2015-04-23 at 15.25.35Planning template

 *As Kerry (Project Manager on this project) had now gone on maternity leave,  Rikke and I (Vivien) facilitated this session*

The aim of the day was to move the ideas closer towards being tested (the ‘do’ stage of this work). This is the programme we worked through, our goals were:

  • Working groups to provide progress reports on improvement ideas
  • Action planning for testing out improvement ideas
  • Measuring impact of improvement ideas
  • Agreeing homework and next steps

Attendance

Nine people attended this session, there were two apologies and one person was unwell.

Connecting up

For our ice-breaker activity, we asked each person to think of three interesting or unusual facts about themself. Two of the facts were to be true and one false. The three facts were then shared with the group, who discussed which was true and which false for each person. Amid much laughter and some debate, we uncovered tales of sporting achievements and interesting previous careers. We also found out a bit about what people would liked to have done in their lives.

Progress reports from each working group

Group 1: ‘Organisations and services (front line staff) to be aware/comfortable talking about heart failure’

The group had consulted with the Dementia Friendly Motherwell team, to learn from some of their approaches in engaging local communities. These included raising awareness about dementia and identifying simple ways that people can be supported while shopping or using local resources. A short ‘tips’ list had been produced and distributed.

The idea of a logo – ‘I am heart aware’ was suggested. Information postcards, stickers or badges could be produced. It was suggested that the campaign could focus on supermarkets, pharmacies or leisure centres.

Group 2: ‘Education and awareness of GPs/practice staff/stable heart failure patients – more literature in practices/contacting GPs to find out what would help’

The group had previously considered inviting a GP/GPs to join the KiP group, however this had not been possible. It was now considered that the group should contact GPs/Practice Nurses by email and by speaking to groups at MCN (Managed Clinical Network) meetings or other relevant events.

The group felt that GPs were more likely to respond to something concrete, like a request to share the information/FAQ sheet. It was also recognised that GPs may be more likely to use the information if they had evidence that is is a resource their patients would value. The group considered whether sharing patients’ stories e.g. Chris’ story on the KiP blog would be an effective way of raising awareness amongst GPs or other healthcare professionals.

Group 3 /4: ‘Diagnostic bundle/tool – patient information/FAQs’ / local online information for people with heart failure

Irene had discussed with colleagues, who were supportive of the idea of producing information for patients. In particular, the Chest Heart and Stroke advice line had received requests for similar information and therefore recognised the need.

There was some discussion about the possibility of SIGN (Scottish Intercollegiate Guidelines Network) creating a pathway for people with heart failure.

It was acknowledged that not all tests were available throughout Scotland and that a gap in the availability of information was widely recognised.

The possibility of the group creating a Lanarkshire pathway was discussed. This could be in the form of a flow diagram with information about how to manage the condition and with colour coding to identify professionals/supports involved at each stage.

Discussion on progress

There had not been a great deal of progress since session 4 and there was a sense from the group that there was not enough time remaining for KiP to have any effective impact. There were questions about how this work could be sustained and whether there would be any resources – financial or other support from IRISS to continue towards implementing the changes explored throughout the project.

The original plan for KiP was revisited, this highlighted a key aspect of the project – that the group members were the people with the power to make change rather than IRISS whose role was to facilitate the group.

The group discussed what could be realistically achieved before the next session, this thinking informed the afternoon action planning sessions.

It was agreed that there is an information gap for people with heart failure and therefore, that supporting GPs to provide more tailored information to patients would be a useful outcome of this project.

The group also agreed that the information produced could be shared through the work of group 2 – Andrea agreed to contact GPs/PNs/Practice Managers directly. The materials could also be shared through carers groups or training courses.

European Heart Failure Day and associated website was considered as a route for sharing information produced through KiP more widely.

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 Example of one of the project report templates that had been completed

Action Planning

This session started with a recap on improvement methodology using the slide show from session 4. The outcomes ‘cake’ analogy was also introduced. This sets out the difference between the concepts: inputs, process, outputs and outcomes. In particular, highlighting that ‘outputs’ and ‘outcomes’ are often confused. Outputs being what is produced, in this case the cake and the outcome being the impact, in this case the happiness felt by the child

The aims of the action planning session were for each group to set out a plan for:

  • Testing ideas before the next session (3 Dec)
  • Identifying impact measures for tests
  • Sharing tests and impact measures with other groups
  • Arranging meetings/contact before next session

The groups were asked to focus on:

  • Amendments to original plan based on this session’s discussions
  • Producing timetable for when things would happen (within and post project)
  • Developing a plan for measuring impact and how to learn from this
  • Scoring against guidance on approaches to improvement

The three groups then worked on their action plans from session 4 and identified actions to move forward.

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Group 2  action plan

Feedback/discussion to main group

The groups fed back to the main group. This allowed group 2 and 3 to come together and their tests of change to be linked.

Group 1: ‘Organisations and services (front line staff) to be aware/comfortable talking about heart failure’

The idea from group 1 was about developing an awareness campaign ‘I am heart aware’. The group discussed how well the learning for the dementia awareness raising campaign could be transferred to work for this group. There were questions about what being ‘heart aware’ might mean for people working in a supermarket. It was suggested that they may know about food content, but they may be reluctant to give advice without background medical knowledge. Likewise in a leisure centre, People with heart failure may be excluded on the basis of risk and even with extra information, staff may be reluctant to offer advice to a person with heart failure. The group agreed that this idea should be further explored before the final session.

Group 2: ‘Education and awareness of GPs/practice staff/stable heart failure patients – more literature in practices/contacting GPs to find out what would help’

Group 2 looked at engaging with professionals. Andrea identified that there would be an opportunity to meet a group of local GPs at the MCN meeting in November. There was also the possibility of attending an event for professionals on ‘breathlessness’. This might include professionals who provide diagnoses and support for people with heart failure. The materials produced by group 3 would be introduced to GPs and staff. Andrea would circulate the materials to GPs, Practice Nurses and Practice Managers.

Tests would be around asking for feedback on the materials and asking for other ideas about how this information could be disseminated.

  1. email contact
  2. speaking to groups at meetings (seeking endorsement – collecting statements)
  3. spreading to other/all GP practices
  4. making information available at libraries
  5. making information available on line

Group 3 : ‘Diagnostic bundle/tool – patient information/FAQs’ / local online information for people with heart failure

Group 3 decided to focus on developing an information sheet for people awaiting diagnosis of heart failure. A short information sheet was suggested with links to various relevant resources and a short description of each resource. The information would also include FAQs. These would be identified by people with heart failure and carers within the group.

Richard and Irene agreed that there was already some useful information within their organisations. Chris identified that before his involvement with KiP, he wouldn’t have known that Chest Heart and Stroke or British Heart Foundation could be a source of information.

Tests would involve development of materials. Richard and Irene agreed to produce information and get feedback from other group members on its accessibility relevance etc.

  1. develop resources list and signposting information (by 14/11)
  2. test within group for consensus on content and accessibility
  3. feedback from wider KiP group and colleagues
  4. develop FAQs for those at point of diagnosis (by 17/11)
  5. test within group for consensus on content and accessibility
  6. feedback from wider KiP group and colleagues

Measures of success for groups 2 and 3 would include:

  1. Endorsement from GPs
  2. Information sheets are requested (numbers?)
  3. Feedback on content (group/ colleagues/GPs/ other staff/people with HF)

Feedback and evaluation

All smiley faces.

What went well?

  • We feel we have made progress
  • Our goals feel achievable
  • The group was a good size

What didn’t work so well?

  • The room was still a bit cold
  • Only de caff coffee
  • Didn’t like the tea
  • Wi-fi in building!

What will you take away from the day?

  • We have clear actions plans and homework
  • We have an end goal in sight
  • Enjoyment

Choosing ideas and developing plans

Screen Shot 2015-03-18 at 20.33.43

So now it was time to identify the ideas we wanted to develop and create plans to make these ideas a reality.  We did this by working through this programme and having these goals:

  • Revisit community mapping and effective communication
  • Develop and agree improvement ideas to trial
  • Agree homework and next steps

Connecting up

Music is a great connector. To get everybody talking, relaxed and to get to know each other just that bit little more we asked group members to talk in pairs about their favourite songs and repeated this three times. People had great fun revealing why, for example, Eric Clapton’s ‘You Look wonderful Tonight’ was so special to them, or what it was about Queen that they loved  (as well as their experiences of seeing them live!). We used spotify or YouTube for the whole group to listen together.

Last session’s homework – feedback from group

This session lasted beyond the time allocated in our programme. However, I decided to let it run as I thought it useful to let the group hammer out some of these issues. It seemed to help them really decide what were the most crucial things they wanted to focus on during the rest of the day. However, we then had to adapt and re-jig the remainder of the programme.

The homework (as based around the idea that online resources for people with heart failure are not particularly good) led to a group perception that good information gets mixed in with the bad, and accurate with mis-information. The group also identified that:

  • It’s often hard to find through online searches/not known about
  • People not signposted to relevant info
  • It’s too negative/scary
  • It’s too full of jargon
  • It can be very confusing eg. American-based or out of date or, as already mentioned, downright wrong

When searching for different search terms people found:

  • If you search for ‘Heart’ alone in North Lanarkshire Council website this brings up schools etc. It’s not until about the 5th line that you get anything relevant
  • North Lanarkshire Council search for ‘heart disease’ brings up events eg on fundraising, and not links to heart failure
  • ‘Heart’ is used as a prefix for many things (e.g. Hearts football club)
  • Information is only as good as what goes in (if information is poor, a loss of credibility results)

Resources people identified as ‘good’ were:

  • Chest Heart and Stroke resources – with one describing their newsletter as a ‘saviour’ with practical information
  • British Heart Foundation resources
  • Cardiomyopathy Association resources
  • ‘Patient part’ of European Society of Cardiology
  • Heart Failure Matters website, informed (?) by support groups with heart failure (with links to British Heart Foundation)
  • Agreed that links from trusted websites (such as Chest Heart and Stroke and British Heart Foundation) to others provides quality assurance
  • Ones without jargon and clear layout

Resources people identified as ‘not so good’ were:

  • Resources that aren’t welcoming
  • Ones that are too clinical (even the ‘good ones’ can be too clinical sometimes)
  • NHS resources cited as the most negative – ‘very scary’ or boring
  • We want to learn more from others’ experiences
  • People can have different personal experiences- but there are also strong similarities in issues faced eg poor experiences with GPs and late diagnosis (a recurring theme); heart failure patients are often angry at diagnosis; services don’t talk to each other in the NHS/they are fragmented.
  • Good to have different resources for different people at different times eg Facebook, doctors, meetings with others
  • We’d like:
    • Joined up pathways
    • A one-stop shop?

From this discussion we identified that people considered heart failure not as a disease, but a response to something else. They believed that earlier diagnosis and increased availability of appropriate support could improve the experience for those affected. This became the key issue for this group.

Consequently, the group felt that GPs should be the lynch pin for person-centred care. However, some of the group wondered whether GPs always fully explored patients’ medical history. They feared that without  this understanding there was a risk of misdiagnosis and inappropriate treatment.  Group members felt they had experienced reading wrong information. For example, having fluid on your legs may lead you to a self-diagnosis of heart failure, but it could also be the result of another condition. There was also the possibility of misdiagnosis due to different approaches to testing.

This discussion identified that fear can be a barrier to people visiting their GP when they have symptoms. The group was clear that accurate information, a checklist even, was needed. However, the approach would need to provide a positive message that if you do have heart failure there are things that you can do.  And according to group members, that shouldn’t automatically mean being advised to give up your job – which can lead to depression.

For those with lived experience in the group, it was often only when they met a heart failure nurse that things began to fall into place. However, it was recognised that the heart failure nurses can only do so much and can be overstretched. Plus, their focus is not on prevention. By this point, things have advanced and opportunities may have been missed to prevent deterioration. Group members’ experiences of attending a cardiologist every year for 25 years, had left them feeling that there was little they could do for themselves that would make a difference. In hindsight, they believed this was not the case and that they had missed opportunities to keep themselves well. One group member’s  son, who had the same inherited condition, had the benefit of her hindsight and was keeping fit and taking the right medicines.

We also discussed that health literacy can be a big problem. People felt there was a lack of consistency around receiving written information and that patients often didn’t  know the right questions to ask.

Is it all about better education?

Screen Shot 2015-03-18 at 20.26.21

Group discussion summarised

In summary, three key themes emerged from this conversation:

  1. Supporting people to ‘get the information they need ‘ from their GP
  2. Supporting people to approach third sector organisations (like Chest Heart and Stroke and the British Heart Foundation) for advice and support and to get tips and support from practitioners and peers
  3. Supporting public awareness raising to support earlier diagnosis

This led the group to identify what was needed, namely…….

How do we support or challenge GPs – and maybe practice nurses too?

  • Through complaints?
  • Forum with GPs
  • Small scale pilot – sharing success of this with others
  • Training and educating GPs eg the British Heart Foundation said that they could offer training to front of house staff and GPs
  • Tools to improve patients’ conversations with GPs eg list of questions to ask at appointment/pre-consultation resources to help empower people and/or prepare them before they go in to see the doctor
  • We heard that in England GPs are being inspected – covering clinical practice to health promotion over next 3 years. A framework has been established, with a scoring matrix used. They contact a cross-section of patients by telephone and may for example, select patients from the heart failure register and ask them how happy they are with their treatment.
  • There was some preference from within the group for making greater use of nurses in GP surgeries; seen as an under-used resource who can provide support but also identify when you need to see the GP. They should be targeted too in any initiative/education drive/ training offer or ‘bundle’.
  • Chest, Heart and Stroke’s Voices programme is designed to train and empower people.
  • Could we go to GPs with an offer of help?
  • Should we also be thinking about ‘What I want the GP to ask me?’

The group discussed that this is in the context of:

  • Increased focus on self-management and noted how this all interacts with the different parts of the system
  • More referrals from GPs to Social Work – signposting to them and to 3rd sector/party organisations.
  • More people are being re-referred to GPs. Support groups in Scotland are patchy and focused on people at end of cardiac rehab
  • Exercise is often offered but not something everyone is interested in. CHS are growing more social groups, including online eg Facebook.
  • More generic groups can offer support eg focused on long term conditions and not just heart failure, people may prefer to get involved in groups focused on their interests.
  • Social Media
    • Some groups are closed. Issue as to whether this identifies people with heart failure or not as online links can be traceable – some people don’t mind; others don’t want their neighbour to know they have heart failure.
    • Some patient forums, including the British Heart Foundation’s, aren’t moderated. This means that people can post up ‘wrong’ information that goes unchallenged and can lead to spread of mis-information. Moderator needed?
    • Issue of online trolls
  • Things not being joined up
    • Is there a disconnect between GPs and cardiologists?  If a patient is diagnosed with an acute condition by a cardiologist, it becomes more difficult to access the GP as the patient is ‘no longer under primary care.’
    • The heart failure nurse isn’t copied into all correspondence, so may not have all the necessary information about a patient’s care or condition.
    • There can be a lack of certainty over where to go for advice or for practical support.

Revisiting community mapping

This part of the day was to explore the content and functionality of local information that was already available. As we’d already covered some of this ground during ‘homework feedback’ we focused our time on looking at some of the following sites – as possible inspiration for the work North Lanarkshire Council has undertaken to do around improving local online information for people with heart failure.

Developing plans for what we want to pilot/trial

We started out from the basis that by the end of today we wanted to agree ideas that we wanted to test. Ideally, a minimum of two and maximum of four, with responsibility for delivering them shared across the group.

The group were reminded:

  • To focus on what we can do (and not what we can’t)
  • We have three months until the end of December to do this within the timeframe of the project
  • No budget to support these ideas apart from our time, energy, commitment and expertise (unless project partners can provide or secure funding)
  • Top 10 tips for Improvement

Screen Shot 2015-03-18 at 20.30.28

We also took some time to consider what we’d hope to achieve and our earlier potential improvement ideas. Interestingly, the discussions we had had earlier that morning had really shifted on the group’s thinking – very much away from peer support groups for example, to focusing attention on achieving earlier diagnosis and raising awareness.

Next step – agreeing ideas to test and setting up working groups

These are the ideas the group came up with instead.

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We then asked the group to vote on their favourite. They were given four red dots each which they could allocate however the liked – so they could spread these among the three ideas or give them all to one.

Screen Shot 2015-03-18 at 20.37.01

Voting on favourite improvement ideas

 

The top three ideas were around:

  1. patient information –  developing a pre-diagnosis symptoms pathway
  2. engagement with GPs/nurses/pharmacists
  3. raising public awareness

Screen Shot 2015-03-18 at 20.37.13

Top scoring improvement ideas

At this stage we split the group up into three smaller groups to create a plan for each of the ideas. We supported this by giving people a template to work through. Each group then fed back to the whole group about their plans and invited comments, feedback, and asked for any help others may be able to provide. Here the three completed templates:

Screen Shot 2015-03-18 at 20.37.39

Screen Shot 2015-03-18 at 20.37.31

Screen Shot 2015-03-18 at 20.37.23

The fourth idea (which we don’t have a photographed template for) is the improvement of North Lanarkshire Council’s online resources, working with individuals in the group to improve local information.

Last, but not least, we invited people to allocate themselves to a working group to make these plans a reality. People were encouraged to be on more than one working group if they wished.

 

Homework and plan for next meeting

For homework, we encouraged each group to be in touch with each other before the next session to take these plans forward. We felt the next meeting should include:

  • Reports from each working group on progress
  • Focus on how to measure impact and learn from any tests of improvement
  • Discussions about how to share/spread improvement ideas to others
  • Discussions about what would happen at the end of this project

Feedback and evaluation

All smiley faces (10 out of 10).  Sorry I didn’t get everyone into the picture

Screen Shot 2015-03-18 at 20.37.57

What went well?

  • The soup was lovely!
  • Feedback on the homework from the last session was really valuable
  • Good to have British Heart Foundation there too!
  • Good balance in group between professionals and non-professionals
  • No TLAs (third letter abbreviations)
  • We’ve moved forward.
  • Interaction and talking

What didn’t work so well?

  • Confusing tea bags!
  • A bit cold in the room
  • Wi-fi in building!
  • The facilitators found going off the agenda, esp with regard to timings stressful, but group members welcomed this and the flexibility
  • Less parking than first venue (but no stairs which is good)

What will you take away from the day?

  • Feeling rejuvenated!
  • We have actions plans!

Starting to plan…

Screen Shot 2015-03-18 at 19.33.28

This was the first session where we started to move from learning about each other and our locality, to thinking about what we may plan to do together.

You can vew our programme for this day and our goals were:

  • To map our community assets
  • To introduce approaches to improvement
  • Develop improvement ideas to trial
  • Agree homework and next steps

Attendance

At this meeting a few were unable to attend. One group member with lived experience, was being treated for an unrelated illness, and another had suffered a close bereavement and would most likely not be returning to the group. This meant there were only three people with lived experience of heart failure, or of caring for someone who has a heart failure.

Two of our professionals who had made it to previous sessions couldn’t make it either, one was on holiday and the other person’s work commitments meant she could no longer attend.

This meant eight people attended this session when we had anticipated 13 or 14. It’s easy to say, expect the unexpected and be prepared to be flexible – and we were. What’s less easy is dealing with the emotional impact of this, as a group and as individuals.

Personally, I also wanted to let the group know that I was pregnant and due at the start of November. This meant that I would only work with the group for one more session. After that, one of my colleagues at IRISS would be taking over my role as project leader and co-facilitator for the group.

Connecting up

Our plan had been to get the group to share in pairs (then move onto a new partner) top tips for staying well. However, in response to the smaller group size and the emotional impact some people’s absence had on the group we formed a circle by drawing our chairs together in a ring. We used this time to share what positive experiences we had experienced over the summer, those that had made us feel positive about being alive and that we had drawn strength from.

Rikke and I (the two facilitators) included ourselves in this conversation. Should you always remain neutral and outside the group? Possibly not, as the group has a relationship with us too. We bring ourselves to every meeting, while conscious that it is the group’s job (not ours) to provide the content  for discussions that will shape and drive forward what it is they do.

Sharing our stories felt very personal for me, and I believe was part of a process in building trust and relationships where boundaries become blurred and broken down. People later commented that they particularly liked this part of the day and preferred sitting in a circle. Strangely, we do that with the other Keeping it Personal group, not this one… Note to self…

 

Recap on person-centred care and support: the power of pictures!

We felt it was important to ground people in what was understood by person-centred care and support before moving on to identify improvement ideas we wanted to trial.

At the last meeting we devised a task to get people to come up with their own person-centred campaign, using the ideas and words to express these that were most meaningful to them. Partly, it was about owning the language. So, we re-played the videos of the groups presenting their campaign ideas. Below are the posters each group created.

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In this session we used pictures to sharpen and personalise the meaning in these posters.  To do this we gave people a choice of 20-30 images and asked them to choose which one which ‘spoke to them’ about person-centred care and support.

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After people had chosen a picture, we asked them to share what it meant to them. Kerry has written –  insert videos. This proved quite powerful and was also a task that people enjoyed.

Last session’s homework

For homework, everyone had agreed to identify resources and supports for the community mapping exercise that had been planned. Rikke and I shared the information provided by those not able to attend. This included information about the Motherwell Locality Support Service (Disability) and Making Life Easier – an online service offering advice, information and direct access to simple pieces of equipment and adaptations for people living in North Lanarkshire.

Several in the group agreed that these looked to be useful services and questioned why they had never heard about them before, directly (from practitioners) or after online searches? We discussed whose ‘job’ it was this to make sure people knew this information, and how we could improve access.  Questions from this discussion included: Should we have named contacts for particular services?  How could these services be more effectively identified online? And how do you figure out a good source of information from one that is not so relevant, full of jargon, may have out of date information or describe heart failure negatively? This conversation supported the group to raise issues of importance to them. Such as needing trusted and relevant information. Consequently everyone seemed keen to get to the community mapping.

Mapping community assets

During this exercise we set out to map the assets people perceived in their locality. But what do we mean by community assets? These can be resources, places, activities, businesses or services – as identified by the people who use them to stay strong and well.

We broke the group into two and asked them to use a traffic light system, writing down ‘assets’ and plotting these on large printed maps of the North Lanarkshire area:

  • Green post-its for those assets they really like
  • Yellow post-its for those assets they liked, but where they could see room for improvement (noting what these improvements might be)
  • Red-post its for ‘the gaps’ – the ‘missing’ assets they wished were there

Both groups explored the existing assets in great depth, with people learning from each other what assets make a real difference in other people’s lives, and what types of services and activities were perceived to enhance the area. Post-it notes were placed accurately on the maps to provide an overview of the assets in the area.

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After completing this exercise we brought people together and looked at similarities and differences on the maps.  They looked quite different, and maybe one thing they were telling us was that different group members were expert about ‘their own patch’ but not others.

Alison mentioned that Voluntary Action North Lanarkshire and Voluntary Action South Lanarkshire had completed a mapping exercise for voluntary organisations which was available online with searchable information and locator tools. We decided we’d look at this at the next meeting.

During our discussion we also spoke about how and when this information could be used. Exploring issues of access, mediation maintaining up-to-date information, and who’s responsibility it may be for doing this. We also talked about ALISS as a tool to support sharing this kind of information. ALISS  describes itself as a ‘local information system for Scotland’ for health and wellbeing resources. It is searchable by keyword, location, or within a certain mile radius. Plus everyone can add to it, describing resources as they choose. Exploring whether North Lanarkshire Council could host a similar online map was also mentioned as a possibility.

Introducing approaches to improvement

We divided our group into two mixed groups of four and set them the Marshmallow Challenge. This is described by its inventor, Tom Wujec, as

a design exercise that encourages teams to experience simple but profound lessons in collaboration, innovation and creativity.

The task is simple: in eighteen minutes, teams must build the tallest free-standing structure out of 20 sticks of spaghetti, one yard of tape, one yard of string, and one marshmallow. The marshmallow needs to be on top. There are also some rules to adhere to- such as not cutting the marshmallow up or holding the structure up when the time runs out! Here’s how our two groups did!

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It’s been repeated many times with different groups, revealing surprising lessons – highlighted in these summary slides: marshmallow challenge- lessons.  Who tends to do the worst or best? Why? Try it yourself and see what your group finds out about itself and discuss what improves or hinders you being successful at the task!

According to Wujec, the marshmallow challenges reveals a number of lessons :

  • That prototyping provides the best results – this is what nursery kids know and graduate business students and Chief Executives don’t. (According to Wujecc, kids also spend less time  jostling for power?)
  • Teamwork and diverse skills provides the best results – with specialised and facilitation skills leading to success
  • Incentives have a negative impact if people have low skills (and don’t know about the above). If they do, the effect is reversed.
  • And last, but not least, beware of hidden assumptions in our attempts – that marshmallows are light and easily supported for example

We also asked the group to watch this video.

I think the video is thought-provoking and identifies certain lessons, including the importance of followers.

  • A leader needs the guts to stand alone and look ridiculous
  • A leader should be easy to follow
  • A leader should embrace followers as equals (its’a about the movement, not you)

But leaders are also over-rated…

  • It takes guts to be a first follower. It’s the first follower who transforms a lone nut into a leader!
  • A follower should be easy to follow too. They need to be public as new followed emulate the first follower, not the leader.

The idea behind the video is that a slowly growing movement will reach a tipping point as more people join in and eventually those who haven’t joined in become the odd ones out.

We also guided the group through  Approaches to improvement – this is a powerpoint presentation with notes that we created. This has key pointers of things to consider (and things to avoid). Thanks need to go to Jason Leitch (Clinical Dirctor, Quality Unit at Scottish Government), whose presentation at the National Learning Event on 27th-28th May 2014 inspired much of the creation of this presentation. Although it has been adapted, so I take responsibility for that. In summary:

  • There’s always room for improvement
  • Focus on what you can do, not what you can’t
  • You choose how you respond to things (take control)
  • Find enthusiasts to try out new improvements on (not those who are reluctant)
  • Don’t start with a large test/pilot
  • Don’t try and get one person to do it all
  • Measure your improvement tests to find out of its been successful – do this often and feedback your results quickly
  • Strong evidence for innovation is necessary but not enough to result in its adoption – you need to win hearts and minds
  • Spread the improvement- pass on the baton, find followers and new leaders

What we want to pilot/trial

Our plan had been to split the group into 2 or 3 smaller working groups to:

  1. Generate  improvement ideas that they wanted to trial
  2. Share with whole group and identify ‘strongest’
  3. Choose which ones to take forward, develop and implement

This was to be informed by the community mapping exercise we had just completed and the introduction on how to approach improvement. We talked them through the kind of detail we hoped to get to, using a template and notes to guide this.

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However, best laid plans don’t always happen.  With only eight people in the group, and only three with lived experience of heart failure, we discussed whether we should break into two smaller groups. Instead we decided to attempt the first part of the task as a single group – splitting up into different groups once ideas to take forward had been chosen. But, during the session we didn’t get past stage 1.  This may have been because the group was too big (nine people), which made managing group dynamics and time more difficult. Nevertheless, we weren’t inclined to force the group past this stage as we felt we needed to let conversations happen.

Lively discussions around what we wanted to change led the group to the following improvement ideas that would require further development.

  • Self-help / peer support groups (with discussion around what these would offer to people or would do e.g. should they be campaigning groups too and/or be seen by professional providers as a useful resource/ network to draw on lived experience?)
  • Easy access to information/trusted information
  • Activity groups need to be easy to find
  • Training/education of centre staff- leaflets
  • Speaking to the ‘right people’  re: access, referral, time
  • Named individuals on information
  • First stop shops: 18 in North Lanarkshire Council; Main Street: all local authority information, but integration=wider remit
  • Group to pull information together and distribute it
  • Groups have to be able to adapt to constant change
  • How would we like agencies to communicate our information/condition specific information

We provided the group with a summary of ‘What we hope to achieve and potential ideas for improvement‘ generated at earlier meetings to cross-check these ideas with out earlier intentions.

Homework

This arose from the previous activity.

Everyone:

  1. Investigate the effectiveness of different search terms on line
  2. Collect useful resources and think about where they can go/bring back examples of websites where communication is good
  3. Provide a website wish list e.g. open access; it would cover lifestyle information, NHS and local authority services; a visual google map of local groups; access to a Facebook group etc…

We also discussed membership of the group.  With the loss of several people with lived experience of heart failure due to ill health, we felt it would be useful to try and redress the balance with the professionals and we still hadn’t given up on trying to recruit a local GP.

Specific group members took on tasks

Louise

  • Try again to find a local GP for the group, with two possibilities…
  • Try to recruit another person with heart failure or carer to the group to  – aiming to find someone who is confident and would be able to slot in quite easily.

Kathie

  • To investigate creating a digital map of relevant local services for the group, hosted by North Lanarkshire Council.

Everyone

  • Group members were also invited to contribute to this blog. Volunteers required! For example it was suggested that this could involve: sharing their own reflections on the project; sharing their personal story of heart failure and what has helped them; sharing their reflections on how person-centred the care they deliver as professionals is; or anything else. This contribution could be written, include a photo montage or be a short film.

Feedback and evaluation

Of the eight group members, six gave the day a thumbs up. Two were not so sure and explained they had hoped for more definitive outcomes and plans to take away from the day.

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What went well?

  • Lunch
  • Good sense of developing where we are going
  • Circular seating arrangement
  • Sharing at the start of the day
  • Have targets/vision – though lots of work still to do
  • Being challenged- with different voices

What could have been better?

  • Lunch
  • More definite outcomes for today ( for some)

What will you take away from today?

  • Homework actions
  • More information
  • Sense of a goal and consensus
  • Questions about group make up (given drop in numbers)

Guest blog from Chris

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We invited all the members of each of the KiP projects to blog about their experiences. Congratulations to Chris for being the first!

Taking it to heart : my account of diagnosing and living with Heart Failure

by Christopher Farrell

I suppose no one ever expects to be living with heart failure but at the age of 33 I guarantee you I never imagined I would.

Heart failure – BOOM – there it is, like the big C or Dementia or any life altering condition, the day they first say that word to you it’s like being punched in the gut followed by a dream-like silence as the words and nothing else sink in – HEART and FAILURE.

For me, I first heard the words sitting on a hospital bed just over a year ago. For about a further year previous to that day I had watched my health decline rapidly. I went from an outgoing 30yr old performing and working in the theatre arts industry, confident and full of life to ending up having literally not being able to leave my house for over 6 months, unable to walk much further than a few feet. My legs were weeping fluid so badly I had 5 inch sores constantly flowing liquid on the fronts and back of each leg, I became unable to eat much as every time I did I regurgitated it, yet found my waist and weight was getting larger each day to the point where on diagnosis I was 12 inches larger in trouser than I had been the same date a year earlier.

Throughout the day and night I continuously coughed up a mix of phlegm and blood, and found myself constantly exhausted. Instead of sleeping in a bed with my partner I had spent 4 months sleeping sat up in a chair slumped onto folded arms on my desk. This was the only way to get any rest due to the fact I choked on fluid anytime I lay on my side or back so as you can imagine I had grown depressed and unpleasant. I am not too ashamed to admit now that towards the end of summer 2013 just before being admitted I was having very dark thoughts and had became so low that thoughts of suicide not only crossed my mind but my lips as I had started to discuss it with my partner, who as you can imagine felt as utterly helpless as I, yet grew even more frightened and frustrated at how few answers we were receiving when ever we talked to medical professionals.

On attending GPs I had been advised it was just a virus, it was the cold, it was my weight –I should state here I have always been morbidly obese, however, in the year prior to this I had worked 8 show s a week as a performer, regularly walked nae ran; repeatedly up and down various hundreds of theatre stairs as anyone who works in the theatre will tell you is part of the job and even cycled round Millport with ease. (Overweight yes, lazy or lethargic no!)

I had contracted Pneumonia the Christmas of 2012 so it was put down to that. After months of antibiotics but only worsening conditions I was sent to hospital to meet with a lung specialist who told me he suspected I may have lung cancer (which as you can imagine as someone who has never smoked a day in their life was a bit of a shock). He booked me in for several tests and treatments. While getting my chest X-rayed a nurse noticed my lack of ability to walk, leg sores and constant fluid coughing and insisted I go there and then for an echo… that afternoon after receiving it I was told to walk round to ward 4 where I was sat on a bed and told that I was very ill, that I was being admitted there and then and was looking at a long stay in hospital if I was lucky enough to make it past the weekend. That I was there and then suffering from severe Heart Failure – BOOM!

My blood pressure, which had never been taken before at any of my GP or consultant meetings, was ridiculously high. One nurse described it as not dangerously high but deathly…. A ward doctor came into to take bloods and advised me I should think about getting my affairs in order…. All this to someone suffering from HBP who thought he was getting tested for lung cancer!! I was made to believe that weekend that my best diagnosis (if I made the week) was a few years. Lack of answers or straight talk that day terrified me when I was spoke to the staff. The language they used confused and scared me. I had internet access in my bed – the information I accessed online scared and confused me even more… those first 3 days where perhaps the most frightening and confusing days I have ever experienced.

I decided in that hospital bed, however, that I was not going to lie down to this condition. I monitored my fluid intake (which I was not advised by the medical staff about but had read helped online) taking less than even recommended. I cut all Salt out of my diet. (Again information I found myself online and I still to this day find it baffling that in a heart ward I was served salt sachets with each meal.)

I used music and meditation to relax myself to help my BP lower and made sure to start going small walks around the hospital to not only help build my strength but to escape the 4 walls and help elevate my mood. It’s amazing how much sitting in the hospital foyer watching the world go by passes the time so much quicker than lying in that bed watching the seconds tick.

Any contraband that visitors brought me was shared out with them or sent to other wards and I advised all on their visits that bringing chocolate or treats high in salt was appreciated but not allowed.

Luckily I responded to treatments, my BP returned to an acceptable level, I peed out 3 stone of fluid, my sores healed and almost 4 weeks later I was released, still unaware of what was happening but with a plan to go to the Jubilee heart hospital for further testing and a date to start seeing my district heart nurse, Louise.

Since getting out I am happy to report I am responding great, I have seen my heart remodel some and my condition return to a manageable level. My health is not what it was but it’s much better – and is getting stronger every week.

I really cannot fault the Heart service nurses or praise mine enough. She was the first person to speak to me in normal terms, explain exactly what the condition meant, explain what each of the medicines I needed to take actually do and why they are important. But most importantly she explained that the information out there is not only often wrong, or outdated but was not written for me – And like any disease everyone is different, what works for one may not for another and retrospectively what doesn’t work for one doesn’t mean it won’t for me. It’s important to find someone like this, someone who helps clear the fog so you can see the road ahead clearer.

I cannot explain how important that was – Hope – a positive glimmer in another wise dark experience. That itself helped give me the push I needed to tackle each day as it comes, to slowly accept that its okay to rest when I need it, to understand that I cannot run round the park, but then I never could… but I can walk round (even power walk some days) and just find places that have regular spots to stop and sit for a minute. Push your self but don’t overdo it. You’re working with your heart not against it.

She also convinced me to talk openly with my partner about it, which helped hugely as I had been so wrapped up in my diagnosis that I had not stopped to think how confused and scared he was. He has been a huge support and I am lucky to have that and glad I have let not just him but everyone in on my condition because its a harder road to travel alone, not impossible, but much harder.

For me I have found all these things have played a part in my journey – I’m still not happy to have this condition, I never will be, but I now know it’s not a death sentence, it doesn’t mean locking myself in a bed afraid to move either and it doesn’t mean losing everything I love to do.

It’s been just over a year since I was officially released from hospital and diagnosed with Heart Failure. One rollercoaster year, filled with every emotion a heart can possibly produce. From despair and worry of a condition that I knew nothing about but now faced living with, to all consuming fear brought on from an overload of negative, outdated and too readily available information. Even anger and frustration at those misdiagnosis, prejudices and stigmas from Medical professionals and strangers at a condition which leaves us feeling so useless at times, yet letting the outside world see no real visible conditions to allow for understanding.

To finally find hope and happiness at the understanding and realisation that being diagnosed with heart failure is not the no hope situation so much of the information makes us believe it is. Certainly changes need to be made, and change can often be frightening, however, change can also lead to new ways of tackling things. For me this first year of diagnosis has been a fight, a fight not to fall in to old habits of eating, lazing and giving up. It has been about fighting the dark cloud that descends upon any of us when dealt a card from life that takes away plans or control. But most importantly for me it’s been about fighting the condition. Not letting Heart Failure define me. Not letting Heart Failure take away every enjoyment in my life. I don’t see the frustration in the fact I no longer drink Alcohol, I see the fun in how much money not drinking saves me, and the pleasure the extra money brings me by allowing me to do things and go places I didn’t before. I don’t focus on the annoyance of not being able to buy breads and sweet things from supermarkets because they are so high in salt, I revel in my new found enjoyment of learning to bake (and showing off my baking) with Nosaltflour and seeing how knowing what is in my foods, and monitoring what I eat has helped my condition improve.

Don’t get me wrong it’s tough, some days really tough and I am at a very early stage in a condition which will be with me all my life, but in an age where we are taught to fight cancer, understand depression, see the invisible illnesses I sure as heck am not going to lie down and give in to this condition (well except for when I’m resting or helping my fluids drain but you know what I mean).

My heart’s failing – All that really just means it needs a little help, so that’s what I’ll give it. Help from medicine, GOOD and ACURATE information, exercise, resting when needed, the right foods. Sure it means I’ll always have a litre bottle of water in my fridge and no salt on my table – but if that also means I’m here to keep fighting then that’s all that matters and if other people are not willing to understand my struggle – they can do what they like and I’ll carry on regardless … but I wont take it to heart!

Experiences of heart failure in our local area

Review, re-cap, repetition and reinforcement

Still in the learning stage of our work we used the start of this meeting to re-state project aims, re-cap what we understood by co-production and person-centred care and re-visit our working together agreement.

We also discussed our hopes and ambitions for this work in the context of the project timetable so people could see how these hopes and aspirations may fit into this trajectory. Despite stressing the need to allow for time to build up relationships, learn together and establish solid agreement, this group’s desire to move quickly to action was quite tangible. Showing them where we were as part of a project plan was, I hope, quite helpful in keeping everyone on board.

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This was our programme for the day and our goals were:

  • To understand person-centred care
  • To understand the assets we have, how we can optimise them and help each other
  • Agree our homework and decide ‘what’s next?’

Connecting up: the power of positive thinking

As our ice-breaker we asked people to speak in pairs about what keeps them strong (before moving to repeat with a new partner).

A summary of thing people shared include:

  • Having goals or being determined
  • A positive mental attitude
  • Glass half full rather than half empty attitude
  • Time to oneself/’me time’
  • Music
  • Doing things one enjoys eg a bit of pampering or the football or gardening
  • Being loved by family/encouraged by others
  • Being needed by others
  • Pets
  • Being pampered
  • Holidays
  • Speaking to others in a similar situation to myself

 Defining person-centred care

There is no clearly defined or agreed definition of person-centred care. As the 2014 Health Foundation publication ‘Helping measure person-centred care’ explains, the lack of a definition means there can be challenges evaluating this approach. However, I like Andy Crawford’s view (Head of Clinical Governance at NHS Greater Glasgow and Clyde), that “whatever ‘it’ is, ‘it’s’ negotiated”.

We shared other perspectives on what person-centred care means to help start this discussion and showed the group:

A GP’s perspective

[youtube]https://www.youtube.com/watch?v=y43TLRzal44[/youtube]

The view of a person who is self-managing their own care

[youtube]https://www.youtube.com/watch?v=x7Zu4P1qK48[/youtube]

Group members then shared their homework which covered:

  1. Reflections on what person-centred care and support meant to them
  2. What people thought person-centred care and support should look like

Group members reflections included that :

  • services need to be better co-ordinated around the individual
  • people should be offered choice rather than told what services will be put in place
  • there needs to be more recognition of the role of professionals other than GPs and consultants in providing advice and support
  • people need to be given enough time to discuss their support needs

After this discussion we felt that it would be useful for the group to create their own language and vision of person-centred care. This might help people feel confident talking about it and challenging other people’s views.  So we asked people to form three small groups and devise a person-centred campaign.

Person-centred campaign

We asked each group to consider what their campaign message should be, how should it should be presented and where it should be communicated. We provided groups with examples for inspiration. These included: NHS Scotland’s  ‘5 Must Do with Me’ areas ‘ and the Principles of Person-centred care and support developed for the Person-Centred Health and Care Collaborative to ‘help find the words and change conversations.’

Each group chose to design a poster

Group 1 aimed to promote the benefits of real partnership working, their strap line was:  ‘Getting further together – we all have our part to play’

Group 2 focused on empowering individuals and promoting choice, they chose the strap line:  ‘Who cares? …I do’

Group 3 used the strap line ‘Take CARE’ with the letters CARE representing: Control (individuals taking control), Acting on symptoms, Responsibility (for self), Expert (using own as well as professional expertise)

Here are short videos of each group describing their campaign

Effective communication

“The biggest problem with communication is the illusion that it has taken place.” (George Bernard Shaw)

The notion that ineffective communication is a hidden problem was introduced – people hide misunderstanding. We know that much of what patients are told by their doctors is forgotten or misunderstood. This is well-illustrated by this clip from the American TV programme, ‘House’  about a clever but awkward and flawed MD.

As miscommunication is so well documented and a common difficulty people experience, we decided to introduce ‘Teachback’ to the group. Teachback involves professionals checking people’s understanding by asking them to repeat back what has been said.  At the same time working to improve their skills in being able to explain things in simple language, by not using jargon or medical terms. Health literacy after all is about the ability to access, understand and action information.

We used a Scottish Government DVD resource to introduce Teachback. There were no examples that were specific to heart failure, so we chose one about a woman being recommended to have an HIV test.

Interestingly some group members had negative reactions to the DVD. They did not think Teachback would be an effective approach to improving communication at a time of crisis, for example at a point of diagnosis, or when raising a serious issue for the first time. Instead people  felt this approach could be more effective when working with someone to manage a condition over time. For example, when attending for check ups.

Perhaps this American example which aligns to the group’s feedback fits this description and would have been better? We’d avoided using this earlier as comments from the other group indicated examples from other countries could be confusing due to the different context.

What’s important to you (WITTY)?

WITTY was developed as part of IRISS’ project called ‘Social Assets in Action‘. From this project a free version of WITTY was made available for use on an i-pad, but a paper version can also be used.

WITTY is designed to help people create a personalised visual map of what’s important in their life to promote well-being. In our group we asked people to work in pairs and use a paper tool (concentric circles), placing themselves in the centre of the circle and what was important to them closer or further away from them based on their own perspectives. Things people may place in the circles could include: pets, social groups, places, activities and experiences that are important to them.  People can be given the option of writing on the paper circles or using props –  like lego pieces to represent what is important to them.

The exercise

In pairs, people asked to take turns using the WITTY resource. We asked one person to complete WITTY and talk through what they are doing and what the aspects on the map mean to them, and we asked another person to listen and summarise what the other person said at the end of the exercise. We reminded people that it’s ok to stop people to check for clarification about what they have just said, and also to observe and take notes. We also asked people to bear in mind and possibly apply the Teachback technique.

A personal example of what was important was offered by someone in our group. This included:

  • The most important people to me are my wife and my family and their wellbeing
  • Cooking is important to me and
  • Gardening and cycling
  • Doing volunteer driving
  • I’m close to my brother, sister, mother and aunt.
  • Housework’s important, but it’s on the outer ring!
  • What I’d like more of: holidays and meals out with friends

Following the exercise we asked for group feedback on how they found the exercise using the following questions.

A) What’s the difference between asking: What’s the matter with you? and, What matters to you? People responded by saying:

  • It’s broader
  • Less negative/more positive
  • WITTY helped reveal relationships between different things/people to help you cope
  • The general view was that it was ‘quite easy’ to have a conversation around ‘What’s important to you?’

B) How easy/difficult was it to communicate with each other during the exercise? People responded by saying:

  • The general view was that it was ‘quite easy’ to have a conversation around ‘What’s important to you?’
  • Good with someone I don’t know
  • Good at prioritising and sharing

C) How and when do you think you could you use these tools and techniques? People responded by saying:

  • Mapping life – shows the positives and good things
  • Can also show bits in life that are lacking (and help you plan)
  • Might identify lots of ‘paid’ support but not ‘natural’ ones – can then help build those up and make connections.
  • Helps you open up and can help establish relationships
  • May depend on who is using it – barriers may naturally go up with some (eg  a GP?)
  • Helps you be more comfortable with new services
  • Need to be genuine –  the person using the tool needs to be really interested
  • Helped show the relevance of Teachback (when maybe not seen before)

There was also discussion around the fact that some people used these techniques naturally,  however, this was not true for all and the value of having tools to support this was agreed.

Moving things forward and homework for next time

We took the opportunity to revisit the 16 ideas-North Lanarkshire identified at the previous meeting as potential actions (or future improvement activities) and asked the group:

  1. Have any of these already been done?
  2. Should any be actioned for next or next again meetings?
  3. Should any be parked for now (with scope to bring back later if we want)
  4. Are future improvement activities something we want to consider implementing at a later stage in the project?

We split group into three smaller groups and asked people to plot the ideas in three areas: things people still needed to learn about, things they were planning,  or were already doing.

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Capturing learning, planning and doing activities

This approach was useful as it helped us identify similarities and differences of opinion about the ideas amongst the whole group. Consequently we discussed the ideas and identified the kind of things we needed further clarification about. This list of potential ideas for improvement was created as a result of this discussion.

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We also created a plan to ‘move things forward’.

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Feedback and evaluation

As with all meetings, at the end we asked for general feedback, a gut reaction response. People were given smiley, not so sure and unhappy faces to hold up to share their gut reaction to the session. The response included smiley faces and two not so sures.

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What went well?

  • Taking stock and direction
  • Good to see everyone again
  • Learnt about new things eg teachback
  • All mixed well
  • What keeps me strong exercise and ideas.

What could have been better?

  • The photos! (taken for the personal profiles)
  • Be good to have a bell!
  • Timings –  felt that we tried to cover too much in the time for some; a 5 min warning before the end of sessions and people taking personal responsibility for listening to this (see above!)

What will you take away from today?

  • Clearer about progress and what meetings are about
  • Continued sense of sharing and learning together

 

Getting to know one another and sharing our perspectives on heart failure

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For an overview of the approach we took in this project check out the Approach applied in KiP page.  This page explains that the process we were working through was to ‘learn’, ‘plan’ and ‘do’ together. This meeting was our first opportunity to learn about each other and share what we knew about heart failure. Our goals for the day were:

  • Connecting up and building relationships
  • Sharing expectations about what we want to achieve
  • Agreeing how we want to work together
  • Agreeing homework and next steps

We achieved these goals by working through this programme.

Connecting up

For our ice-breaker we asked people, in pairs, to ask each other:

  • Why did you come along today?
  • What is one thing you are really quite good at?
  • What is a random or interesting fact about you?

After hearing what their partner had to say we asked people to talk to someone else.

Sharing expectations

Traditional approaches tend to start with identifying a proposed end point and working back to devise a plan of activities. However, this approach does not tend to allow time for project outcomes to be considered by everyone in the group. Designing a project in terms of the outcomes people hope to achieve, can challenge traditional ideas of project management. I particularly like the view that,

“An approximate response to a well considered problem is worth a great deal more than an exact answer to an approximate problem.” (Alison Petch, IRISS Director, Ardoch House, Jan 2014).

With this group, sharing expectations proved to be a useful exercise. It grounded us in reality and reminded us all why we were there. This helped bring the group together. This is a synthesised version of what we decided we wanted to achieve together.

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Working together agreement

In line with the principles of co-production, we asked the group to create a working together agreement. We gave them a suggested version and asked them to discuss whether there was anything in it they wanted to keep, amend or add. This is what was agreed:

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Communication

We discussed what would help group members communicate effectively with each other during and between meetings (some of which fed into the final version of the working together agreement). Different aspects included:

  • Remember to listen as well as speak
  • Show respect for everybody
  • Like idea of a project blog  – but access denied/not available for some. Would be good to receive an email if a new blog post. Some in the group were also keen to contribute to the blog themselves which was encouraged.
  • Good laugh and fun!
  • Stairs!!!
  • Use of jargon – problematic
  • Noted that Chest Heart and Stroke have already produced a Glossary – a ‘Jargon buster’ type publication.

We also proposed a ‘parking lot’ idea, as a space to identify words or terms that the group considered get in the way of effective communication. At the first meeting ‘co-production’ was identified as one of those words! In addition, holding up ‘red cards’ if group members wanted others to stop when they didn’t understand was suggested, however the group decided this approach wasn’t necessary.

 

Introducing co-production

We played a short film,  ‘The parable of blobs and squares‘ to introduce the concept of co-production. An alternative film you might want to use is ‘Co-production’ by SPICE.

https://www.youtube.com/watch?v=egav5xjb-lg

After watching this film we discussed in small groups what we do in our everyday lives that is co-produced, and the benefits of this kind of activity. We didn’t ask people about the challenges but they brought this up. Here’s a summary of their thoughts:

The benefits:

  • It pools skills and experiences
  • Nobody can do everything
  • There is someone who can help – who can do what you can’t do

The challenges:

  • You can become too reliant on others’ strengths, for example, doing things for children or for partner (and then they may no longer be there)
  • It’s important to share your strengths with others

 

Exploring person-centred care and support

During the day we also explored what ‘person-centred care and support’ meant to people. As part of this, we asked everyone to reflect on what person-centred care meant to them. Prompts to help people, included three questions:

  1. What’s been good person-centred care?
  2. What could have been better?
  3. What help or support have you received that has mattered the most to you?

We asked people to write answers to these questions on a card and place it in an envelope. These were then passed around the group until the music stopped, people then read aloud what was written inside.

IMG_0014

Completed cards on person-centred care

 

Summary of responses:

  1. What’s been good person-centred care?
    • practical support from friends and having someone to talk to
    • nurse took time to sit with me and explain things
    • not being slotted in to a process
    • different professionals involved in my care working together and being kept informed
  2. What could have been better?
    • being given more information about side effects of medication
    • to have been asked
    • information sharing amongst professionals
    • more information for the family
  3. What help or support have you received that has mattered the most to you?
    • GP knowing me and taking time
    • partner, friends and family
    • my thoughts and views being acknowledged
    • getting a diagnosis and treatment that is helping

 

Next, we worked in small groups to identify initial ideas that people thought could improve support for people with heart failure. We were mindful that most of the group were meeting for the first time, so exercises were devised so that group members could draw upon their own experiences, but did not need to share them. For this reason, we created ‘personas’ or characters,  devised with the help of Chest Heart and Stroke, to map pathways (or experiences) from pre- to post- diagnosis.  Here are the personas we used.

Persona 1: Raza

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Persona 2: Frank

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Persona 3: MollyScreen Shot 2015-03-17 at 21.25.10To create these pathways we used lining paper and asked groups to plot key points for each of their personas to identify positive and negative experiences at: pre-diagnosis, diagnosis and post-diagnosis stages of heart failure. They were then asked to reflect on the experience they had plotted and discuss how the experience could have been improved. This discussion was also recorded on the maps. These are the experience maps drawn  for each persona.

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Ideas for improvement included:

Before diagnosis

  • better knowledge of signs and symptoms for generalist staff
  • clearer diagnostic pathways
  • screening programme

During diagnosis

  • more information at an earlier stage
  • peer support – reassurance and positive messages
  • heart failure nurse involved earlier

After diagnosis

  • managing underlying health conditions
  • social support
  • information and reassurance
  • support for self-care
  • information for employers

Future meetings: getting the group to help set the agenda

Inspired by one of IRISS’  D-cards we decided to ask the group to help set the future agenda.  We adapted the D-Card about ‘letting go of control‘ for this purpose.  This adaptation involved asking small groups to think about several questions. Here are the questions and some of the responses:

  • What else do we need to know/learn about to bring back to the group?
    • how to connect agencies eg cardiology community
    • how to raise awareness with public and with GPs
  • Who can help us understand and learn this information?
    • GPs
    • public health information person
    • Chest Heart and Stroke
    • Others with the condition
  • Is this knowledge within the group?
    • knowledge of what works and what doesn’t
  • What other expertise do we need to invite to join the group?
    • mapping what’s out there
    • examples of good things others have done
  • What do we need to do between now and the next session to make some/all of this happen?
    • talking to others with the condition
    • recruit a GP
    • develop a clear statement of why we are here and what we are going to do

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Group feedback on ‘setting the agenda’

From this discussion the group identified these 16 improvement ideas that could inform group activities.

16 ideas-North Lanarkshire

 

Homework for next time

A good place to start we felt was asking group members to begin with themselves. We asked them to keep a journal/diary of personal reflections on the following and bring back 3 key insights to share next time:

  • What person-centred care means to me in my life (or care and support that is centred around me)
  • What person-centred care and support should look like

However, the group suggested an addition. This was to produce a personal profile for next time highlighting why they were here and what they could bring to the table.

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Profiles of group members

Evaluation and feedback

We went for an ‘evaluation-lite’ approach, asking small groups to reflect on their gut reaction to the day and to feedback to the whole group using: smiley, not so sure, and unhappy faces.

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We also asked people to share their thoughts about what went well during the session, what could have been better and what people will take away from the day. This is what people said:

What went well?

  • Sharing experiences
  • Like the room
  • Group has gelled and everyone has contributed
  • Going off at tangents was helpful

What could have been better?

  • Tea!
  • A bit longer for activities (though others were happy with this)

What will you take away from today?

  • Less of a feeling of being on my own.