Goals for\u00a0the day:\u00a0<\/strong><\/h3>\n\n- Revisit community mapping and effective communication<\/li>\n
- Develop and agree<\/strong> improvement ideas to trial<\/li>\n
- Agree homework and next steps<\/li>\n<\/ul>\n
Connecting up<\/strong><\/p>\nMusic is a great connector. Our icebreaker – to get everybody talking, relaxed and to get to know each other just that bit little more – was to get group members to talk in pairs about their favourite songs. I think we repeated this 3 times.\u00a0People 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 and their experiences of seeing them live. I also loved finding out that Louise’s family had Team B songs to keep them gee-ed \u00a0when they needed to be. Brilliant!<\/p>\n
Rikke was in her element as\u00a0DJ, finding some of them on spottily or youtube for the bigger group to listen to and share.<\/p>\n
Last session’s homework – feedback from group<\/strong><\/p>\nOK, this lasted WAY beyond the time allotted 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, it left Rikke and I as facilitators a bit stressed as we had to adapt and re-jig the programme to accommodate this!<\/p>\n
The homework as based around the idea that online resources for people with heart failure are not particularly good. The good gets mixed in with the bad and the accurate with mis-information. Also:<\/p>\n
\n- It’s often hard to find through online searches\/not known about<\/li>\n
- People not signposted to relevant info<\/li>\n
- It’s too negative\/scary!<\/li>\n
- It’s too full of jargon<\/li>\n
- It can be very confusing eg. American-based or out of date or, as already mentioned, downright wrong!<\/li>\n<\/ul>\n
Effectiveness of different search terms?<\/p>\n
\n- If you search for \u2018Heart\u2019 alone in North Lanarkshire Council website this brings up schools etc. It\u2019s not until about the 5th<\/sup> line that you get anything relevant.<\/li>\n
- North Lanarkshire Council\u00a0search for \u2018heart disease\u2019 brings up events eg on fundraising, and not links to heart condition.<\/li>\n
- \u2018Heart\u2019 is used as a prefix for many things! Also Hearts football club.<\/li>\n
- Information is only as good as what goes in (if information is poor, a loss of credibility results).<\/li>\n<\/ul>\n
Resources we like:<\/p>\n
\n- Chest Heart and Stoke resources \u2013 with one describing their newsletter as a \u2018saviour\u2019 with practical information<\/li>\n
- British Heart Foundation resources<\/li>\n
- Cardiomyopathy Association resources<\/li>\n
- \u2018Patient part\u2019 of European Society of Cardiology<\/li>\n
- Heart Failure Matters website, informed (?) by support groups with heart failure (with links to British Heart Foundation)<\/li>\n
- Agreed that links from trusted websites (such as Chest Heart and Stroke and British Heart Foundation) to others provides quality assurance<\/li>\n
- Ones without jargon and clear layout<\/li>\n<\/ul>\n
Resources we don\u2019t like- and things we want more of<\/p>\n
\n- Resources that aren\u2019t welcoming<\/li>\n
- Ones that are too clinical (even the \u2018good ones\u2019 can be too clinical sometimes)<\/li>\n
- NHS resources cited as the most negative – \u2018very scary\u2019 or boring!<\/li>\n
- We want to learn more from others\u2019 experiences<\/li>\n
- 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\u2019t talk to each other in the NHS\/they are fragmented.<\/li>\n
- Good to have different resources for different people at different times eg Facebook, doctors, meetings with others<\/li>\n
- We\u2019d like:\n
\n- Joined up pathways<\/li>\n
- A one-stop shop?<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
Our\u00a0group\u2019s\u00a0experience-\u00a0and what they think is most important!<\/strong><\/p>\nHeart failure is not a disease, but a response to something else. The current situation has to change to achieve earlier diagnosis and appropriate support. This has become the key issue for our group.<\/p>\n
The group feel that GPs need to be the lynch pin for person-centred care, \u2018but they don\u2019t look into your medical history properly\u2019 – so people may not be properly diagnosed and medically managed (and may even be on the wrong medicines)! \u2018GPs aren\u2019t joining the dots!\u2019 This is made worse by there being \u2018lots of wrong information out there!\u2019 \u2018Fluid on legs\u2019 may lead you to a self-diagnosis of heart failure, but it may be other things and not be heart disease (although the information doesn\u2019t tell you this). Louise B spoke of her husband\u2019s heart failure being missed time after time. \u2018He passed all 6 tests- maybe because he was a fit guy\u2019. It was only by going to the British Heart Foundation who gave him a table tilt test, that he finally got a diagnosis (and a pacemaker before it was too late)!<\/p>\n
Clearly, fear can be a barrier to get people to go to their GP too! We need accurate information, a checklist even, without scaremongering people. We want to provide a positive message that if you do <\/em>have heart failure there are things that you can do! And according to our group members, that shouldn\u2019t automatically mean being advised to give up your job \u2013 that can lead to depression!<\/p>\nOften it\u2019s only when people meet a heart failure nurse that things fall into place. However, the heart failure nurses can only do so much and are overstretched. Plus, their focus is not on prevention. By this point, things have advanced and we may have missed opportunities to stop things getting worse! Ian and Margaret\u2019s own experiences of attending the cardiologist every year for 25 years was that there was little they could do for themselves that would make a difference. In hindsight, they believe this was not the case and they missed opportunities to keep themselves well to avoid going down the heart failure route. Margaret\u2019s son, who has the same inherited condition, has the benefit of her hindsight and is keeping fit and on the right medicines.<\/p>\n
Health literacy can also be a big problem. There\u2019s no consistency around receiving written information and patients aren\u2019t good at knowing the questions to ask!<\/p>\n
Peer support can be really valuable, however, people also worry about being bullied and stigmatized if identified as a \u2018heart failure\u2019 person \u2013 just as young people who are obese worry about being seen doing exercises with other obese kids and may rather hide at home!<\/p>\n
Is it all about better education?<\/p>\n
![\"KIP-NLAN-S4-homework](\"https:\/\/live.staticflickr.com\/5597\/15496190242_7492efcded_c.jpg\")
<\/a><\/p>\nIn summary, are there three key aspects?<\/p>\n
\n- Getting what we need from GPs- by training and challenging them<\/li>\n
- Until then<\/em>, making sure that people know they can turn to third sector organisations (like Chest Heart and Stroke and the British Heart Foundation) for advice and support and to get tips and support from \u2018people like them\u2019<\/li>\n
- Public awareness raising to support earlier diagnosis<\/li>\n<\/ol>\n
This led the group to identify what was needed, namely…….<\/p>\n
How do we support or challenge GPs \u2013 and maybe practice nurses too?<\/p>\n
\n- Through complaints<\/li>\n
- Forum with GPs<\/li>\n
- Small scale pilot \u2013sharing success of this with others<\/li>\n
- Training and educating GPs e.g. the British Heart Foundation said that they\u00a0could offer training to front of house staff and GPs<\/li>\n
- Tools to help challenge 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. People shouldn’t be so passive and frightened to complain!<\/li>\n
- We heard that in England GPs are being inspected-covering clinical practice to health promotion over next 3 years \u2013 this may be triggered by a complaint. A framework has been established to inspect on different things, 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.<\/li>\n
- 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 \u2018bundle\u2019.<\/li>\n
- Chest, Heart and Stroke\u2019s Voices programme is designed to train and empower people.<\/li>\n
- We can go to GPs with an offer of help? (There are different things we can\u00a0offer that can help them).<\/li>\n
- However, should we also be thinking about \u2018What I want the GP to ask me?\u2019<\/li>\n<\/ul>\n
The group discussed that this is in the context of:<\/p>\n
\n- Increased focus on self-management noted and how this all interacts with the different parts of the system<\/li>\n
- More and more referrals from GPs to Social Work- signposting to them and to 3rd<\/sup> sector\/party organisations.<\/li>\n
- More people are being re-referred to GPs after initial \u2018fobbing off\u2019 Support groups in Scotland are patchy and focused on people at end of cardiac rehab<\/li>\n
- Exercise is not something everyone is interested in. CHS are growing more social groups, incl. online Facebook ones.<\/li>\n
- It\u2019s also recognized that groups can be more generic eg focused on long term conditions and not just heart failure or that people may prefer to \u2018get away\u2019 from heart failure (especially if these become competitive or negative) and get involved in groups focused on their interests.<\/li>\n
- Social Media\n
\n- Some groups are closed. Issue as to whether this identifies people with heart failure or not as online links can be traceable \u2013 some people don\u2019t mind; others don\u2019t want their neighbour to know they have heart failure.<\/li>\n
- Some patient forums, including the British Heart Foundation\u2019s, aren\u2019t moderated. This means that people can post up \u2018wrong\u2019 information that goes unchallenged and can lead to spread of mis-information. Moderator needed?!<\/li>\n
- Issue of online trolls<\/li>\n<\/ul>\n<\/li>\n
- Things not being joined up\n
\n- GPs are fearful of cardiologists? If a patient is diagnosed with an acute condition by a cardiologist, the GP won\u2019t see the patient as \u2018no longer under primary care.\u2019<\/li>\n
- The heart failure nurse isn\u2019t copied into all correspondence \u2013 so may need to investigate certain things him\/herself regarding a patient\u2019s care or condition.<\/li>\n
- This can leave patients in a real predicament eg. if I lose my medicines, is it ok to miss them? Lack of certainty over who can tell me\/give me advice on this and\/or provide the medicine? In Chris\u2019s case, pharmacists didn\u2019t want to engage with him on this and the GP didn\u2019t reply to the message left on the answerphone.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
Revisiting community mapping<\/strong><\/p>\nThis part of the day was to explore the content and functionality of local information \u00a0that was already available.\u00a0As we’d already\u00a0covered 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\u00a0to do around improving local online information for people with heart failure.<\/p>\n
\n- East Dunbartonshire Assets map<\/a><\/li>\n
- Google maps \u2013 free, slightly les sophisticated than above – lots of examples out there!<\/li>\n
- Voluntary Action North Lanarkshire <\/a>\u00a0( see\u00a0Locator<\/a>)<\/li>\n
- Voluntary Action South Lanarkshire<\/a> ( see Infobase<\/a>\u00a0and Locator search<\/a>)<\/li>\n
- ALISS<\/a><\/li>\n
- Living it Up (Flourish)<\/a>\u00a0and its\u00a0No Delays prototype which can be found from this page<\/li>\n
- There\u2019s also the Living it Up \u00a0experience guide to ‘Living with heart failure’<\/a><\/li>\n<\/ul>\n
\u00a0Developing \u00a0plans for what we want to pilot\/trial<\/strong><\/p>\nWe started out from the basis that by the end of today we wanted \u00a0to AGREE ideas that we wanted to test\/trial. Ideally, a minimum of two and maximum of four, with responsibility for delivering them shared across the group and involving both professionals and non-professionals.<\/p>\n
The group were reminded:<\/p>\n
\n- To focus on what we can do (and not what we can’t)<\/li>\n
- We have three months until the end of December to do this within the timeframe of the project<\/li>\n
- No budget to support these ideas apart from our time, energy,\u00a0commitment and expertise (unless project partners can provide or secure funding)<\/li>\n
- Top 10 tips for Improvement<\/a><\/li>\n<\/ul>\n
We also took some time to consider What we hope to achieve<\/a>\u00a0and earlier\u00a0Potential Improvement Ideas<\/a>\u00a0and where we had got to last time.\u00a0Rikke re-presented the ideas we had formed at the last session – with the opportunity to amend\/delete or add to these.<\/p>\n![\"KIp-NLAN-S3-Ideas](\"https:\/\/live.staticflickr.com\/3950\/15338655750_d86b2451ef_b.jpg\")
<\/a><\/p>\nInterestingly, the discussions we had had earlier that morning had really shifted on the group’s\u00a0thinking – very much away from peer support groups for example, to focusing attention on achieving earlier diagnosis and raising awareness.<\/p>\n
Next step – agreeing ideas to test and setting up working groups<\/strong><\/p>\nThese are the\u00a0ideas the group came up with instead! 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!<\/p>\n
![\"KIP-NLAN-S4-voting1\"](\"https:\/\/live.staticflickr.com\/5604\/15309633339_79d6f9c007_b.jpg\")
<\/a><\/p>\n![\"KIP-NLAN-S4-voting6\"](\"https:\/\/live.staticflickr.com\/3948\/15309970617_557dc6f051_c.jpg\")
<\/a><\/p>\nAt this stage we split the group up into three smaller groups to work on the three ideas identified!\u00a0We asked them to complete the Template<\/a>\u00a0provided (after taking them through this). Each group was then asked to provide feedback to the bigger group – sharing their plans and inviting comment, feedback and taking the opportunity to ask for any extra help they needed!<\/p>\n![\"KIP-NLAN-S4-ideas1\"](\"https:\/\/live.staticflickr.com\/3933\/15496189612_cbdbd1b2bb_c.jpg\")
<\/a><\/p>\n![\"KIP-NLAN-S4-ideas2\"](\"https:\/\/live.staticflickr.com\/2949\/15496189912_b25dd5a6f2_c.jpg\")
<\/a><\/p>\n![\"KIP-NLAN-S4-ideas3\"](\"https:\/\/live.staticflickr.com\/2945\/15496549155_8f80db9975_c.jpg\")
<\/a><\/p>\nThe ‘missing’ fourth idea, will be improvement of North Lanarkshire Council’s online resources, working with individuals in the group to improve local information.<\/p>\n
Last, but not least, we invited people to allocate themselves to a Working Group to take these ideas forward from planning into implementation. People were encouraged to be on more than one Working Group if they wished. So, they were free to reassign themselves following feedback if they had energy and enthusiasm for an idea.<\/p>\n
![\"KIP-NLAN-S4-summary](\"https:\/\/live.staticflickr.com\/3954\/15309633549_6abd4fbb00_c.jpg\")
<\/a><\/p>\n <\/p>\n
Homework and plan for next meeting<\/strong><\/p>\nAs homework we encouraged each group to be in touch before the next session (on 29 Oct) – physically or by email to try and takes plans forward.<\/p>\n
As for the next meeting, we felt this should include<\/p>\n
\n- reports from each Working Group on progress<\/li>\n
- focus on how to measure impact and learn from any tests of improvement<\/li>\n
- how to share\/spread improvement ideas to others<\/li>\n<\/ul>\n
The group was happy with this but wanted to include what would happen at the end of the project to the programme.<\/p>\n
Feedback and evaluation<\/strong><\/p>\nAll smiley faces (10 out of 10 folk). \u00a0Sorry I didn’t get everyone into the picture!<\/p>\n
![\"IMG_KIP-NLAN-S4-feedback1\"](\"https:\/\/live.staticflickr.com\/3953\/15473410156_31fd8a68b4_b.jpg\")
<\/a><\/p>\nWhat went well?<\/p>\n
\n- The soup was lovely!<\/em><\/li>\n
- Feedback on the homework from the last session was really valuable<\/em><\/li>\n
- Good to have British Heart Foundation there too!<\/em><\/li>\n
- Good balance in group between professionals and non-professionals<\/em><\/li>\n
- No TLAs (third letter abbreviations)<\/em><\/li>\n
- We\u2019ve moved forward.<\/em><\/li>\n
- Interaction and talking<\/em><\/li>\n<\/ul>\n
What didn\u2019t work so well?<\/p>\n
\n- Confusing tea bags!<\/em><\/li>\n
- A bit cold in the room<\/em><\/li>\n
- Wi-fi in building!<\/em><\/li>\n
- The facilitators found going off the agenda, esp with regard to timings stressful, but group members welcomed this and the flexibility<\/em><\/li>\n
- Less parking than lst venue (but no stairs which is good)<\/em><\/li>\n<\/ul>\n
What will you take away from the day?<\/p>\n
\n- Feeling rejuvenated!<\/em><\/li>\n
- We have actions plans!<\/em><\/li>\n<\/ul>\n
<\/p>\n
<\/h3>\nChest Heart and Stroke want your feedback<\/h3>\n
Chest, Heart and Stroke are inviting feedback on two options for their new look newsletter: Newsletter 1<\/a>\u00a0and Newsletter 2<\/a>\u00a0(or\u00a0options 1 and 2). The deadline is Friday 3rd October<\/strong>, so get your views in quick by completing this survey!<\/a><\/p>\nOPTION 1<\/p>\n
![\"CHS](\"https:\/\/live.staticflickr.com\/3929\/15225204517_bb25d225dc_b.jpg\")
<\/a><\/p>\nOPTION 2<\/p>\n
![\"CHS](\"https:\/\/live.staticflickr.com\/3927\/15225169838_fb4a742f23_b.jpg\")
<\/a><\/p>\n<\/h3>\n20 August 2014 – Third meeting of the group<\/h3>\n
Here’s our Programme<\/a>\u00a0for the day.<\/p>\nGoals for the day<\/strong><\/p>\n\n- To map our community assets<\/li>\n
- To introduce approaches to improvement<\/li>\n
- Develop improvement ideas to trial<\/li>\n
- Agree homework and next steps<\/li>\n<\/ul>\n
Connecting up<\/strong><\/p>\nOur plan had been to get the group to share in pairs (then move onto a new partner) top tips for staying well. However, we had a few drop outs, several last minute. We only found out on the day that one of our group was being treated for another illness, but would return to the group next time.\u00a0Another had suffered a close\u00a0bereavement and would most likely not be returning to the group. This meant we were down to three people with lived experience of living or caring of someone with heart failure. Some of our professionals who had made it to the two previous sessions couldn’t make it either: one was on holiday and the other person’s duties had changed so she now saw patients on Wednesdays – the day of our sessions.<\/p>\n
This meant we were down to eight on the day, when we had hoped for 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….<\/p>\n
As for myself, I wanted to let the group know that I was pregnant with my baby due at the start of November. This meant that I would be with them for\u00a0one 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.<\/p>\n
So…instead of working in pairs, \u00a0we formed a circle by drawing our chairs together in a ring. We used this time\u00a0to 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. The two facilitators- Rikke and myself – were included in this. Should you always remain neutral and outside the group? Possibly not, as the group has a relationship with us too.\u00a0We bring ourselves to every meeting,\u00a0while conscious that it is the group’s job (not ours) to provide the content \u00a0for discussions that will shape and drive forward what\u00a0it is they do!<\/p>\n
Sharing our stories \u00a0felt very personal – at least it did for me – and 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.\u00a0Strangely, we do that with the other Keeping it Personal group, not this one… Note to self…<\/p>\n
Insert videos<\/strong><\/em><\/p>\nWe asked for permission to film and share these videos.<\/p>\n
<\/p>\n
Recap on person-centred care and support: the power of pictures!<\/strong><\/p>\nWe felt it was important to ground people in what was understood by person-centred care and support before moving on in the day to identify improvement ideas we wanted to trial. Last time, we have devised a task to get people to come up with their own 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 (see previous blog post to watch). Below are the \u00a0posters they produced.<\/p>\n
![\"IMG_0163\"](\"https:\/\/live.staticflickr.com\/3904\/15113665836_4daee92ebd_b.jpg\")
<\/a><\/p>\n![\"IMG_0164\"](\"https:\/\/live.staticflickr.com\/3844\/14949974639_d0b364a803_b.jpg\")
<\/a><\/p>\n![\"IMG_0165\"](\"https:\/\/live.staticflickr.com\/3860\/15113666066_1ab5ce947a_b.jpg\")
<\/a><\/p>\nHowever, this time, we wanted to try using\u00a0pictures to sharpen and personalise those meanings. We gave people a choice of 20-30 images and asked them to choose which ones ‘spoke to them’ about person-centred care and support.\u00a0Most communication, as we know, but can forget,\u00a0 is non-verbal. It includes gestures, facial expressions, eye contact, body language and touch, but \u00a0it also includes pictures. As the adage goes, “a picture is worth a thousand words” – in some situations….<\/p>\n
![\"Picture](\"https:\/\/live.staticflickr.com\/3850\/14951426077_f20aec9e0a_b.jpg\")
<\/a><\/p>\nAfter people had chosen a\u00a0picture,\u00a0we asked them to share what it meant to them… (insert videos)<\/strong><\/em><\/p>\nThis proved quite powerful and was also a task that people enjoyed.<\/p>\n
<\/p>\n
Last session’s homework<\/strong><\/p>\nFor homework, everyone had agreed\u00a0to identify resources\/supports for the community mapping exercise we were about to do. We shared the information provided by those not able to attend today’s meeting. This included\u00a0information about the Motherwell Locality Support Service (Disability) and \u00a0Making Life Easier <\/a>– an online service offering advice, information and direct access to simple pieces of equipment and adaptations for people living in North Lanarkshire.<\/p>\nSeveral in the group agreed that these looked to be useful services, but questioned why they had never heard about it before – either directly, \u00a0by being signposted by practitioners\u00a0or through doing online searches?\u00a0‘Whose job’ was this to make sure people knew? How did we stop people being passed around the houses when they were trying to get in touch? Did we need named contacts? Why weren’t these services effectively identified through online search engines? And then there were the services people didn’t like so much or weren’t so relevant e.g. American sources of information on heart disease were potentially confusing as provided in a different context and other sources. Other sources were deemed ‘too full of jargon’ (North Lanarkshire council website), ‘too negative’ or, provided out of date \u00a0information about life expectancy following diagnosis which was scary and damaging!.<\/p>\n
Issues raised<\/p>\n
\n- We want ‘trusted’ information<\/li>\n
- We want information\u00a0relevant to this client group<\/li>\n
- Why don’t we know about some of the good stuff going on?<\/li>\n<\/ul>\n
Everyone seemed raring to get to the community mapping!<\/p>\n
Mapping\u00a0community\u00a0assets<\/strong><\/p>\nWe set out to map the assets we had locally. But what do we mean by community assets? These can be resources, places, activities, businesses or services \u2013 as identified by the people who use them\u00a0in helping them stay strong and well.<\/p>\n
We broke the group into two and asked them to use a traffic light system, writing down \u2018assets\u2019 and plotting these on large printed maps of the North Lanarkshire area:<\/p>\n
\n- Green post-its\u00a0for those assets they really like<\/li>\n
- Yellow post-its for those assets they liked, but where they could see room for improvement (noting what these improvements might be)<\/li>\n
- Red-post its for \u2018the gaps\u2019 \u2013 the\u00a0\u2018missing\u2019 assets they wished were there<\/li>\n<\/ul>\n
Both groups explored the existing assets in great depth, with people learning from each other what assets make a real difference in their lives and what types of services and activities would enhance the area. Post-it notes were place accurately on the maps to provide an accurate overview of the distribution of assets in the area.<\/p>\n
After that we brought the two groups back together and looked at similarities and differences. Rikke expertly facilitated the discussion around what the maps were telling us. They looked quite different, and maybe one thing they were telling us were that different group members were\u00a0expert about ‘their own patch’ but not others. For example, those who lived in Wishaw knew a lot more about what Wishaw has\u00a0to offer than they did about Motherwell. Alison\u00a0mentioned that Voluntary Action North Lanarkshire<\/a>\u00a0and Voluntary Action South Lanarkshire<\/a>\u00a0had completed a mapping exercise for voluntary organisations – with searchable\u00a0info base\u00a0and locator tools. We resolved to look at this next time\u00a0and include this data.<\/p>\n![\"IMG_0282\"](\"https:\/\/live.staticflickr.com\/3851\/14949924029_9cc3cceda2_b.jpg\")
<\/a><\/p>\n![\"IMG_0291\"](\"https:\/\/live.staticflickr.com\/3925\/14949963540_37f1aa2ff6_b.jpg\")
<\/a><\/p>\n![\"IMG_0287\"](\"https:\/\/live.staticflickr.com\/3858\/14949963210_7ecd329038_c.jpg\")
<\/a><\/p>\nAs a group we also touched on\u00a0how and when this information could be used \u2013 exploring issues of access; mediation; maintaining up-to-date information and responsibility for doing this. We talked about\u00a0ALISS\u00a0<\/a>as one way of doing this. ALISS \u00a0describes itself as a \u00a0\u2018local information system for Scotland\u2019 for health and wellbeing resources. \u00a0It\u2019s searchable by keyword, location or within a certain mile radius that you can set. Plus everyone can add to it, describing resources in the words that they choose. Whether or not North Lanarkshire Council\u00a0could produce an online map was also mentioned as a possibility worth further exploration?<\/p>\nIntroducing approaches to improvement<\/strong><\/p>\nWe divided our group into two mixed groups of four and set them the Marshmallow Challenge<\/a>. It’s described by its inventor, Tom Wujec, as ‘a\u00a0design exercise that encourages teams to\u00a0<\/span>experience\u00a0<\/span>simple but profound lessons in collaboration, innovation and creativity.’<\/span><\/p>\nThe task is simple: in eighteen minutes, teams must build the tallest free-standing\u00a0structure out of 20 sticks of spaghetti, one yard of tape, one yard of string, and one marshmallow. The marshmallow needs to be on top.\u00a0There are also some rules<\/a>\u00a0to 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!<\/span><\/p>\n![\"IMG_0241\"](\"https:\/\/live.staticflickr.com\/5591\/14949932080_0804a81fa6_c.jpg\")
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<\/a><\/p>\nIt’s been repeated many times with different groups, revealing surprising lessons – highlighted in these\u00a0summary slides: marshmallow challenge- lessons<\/a>.\u00a0\u00a0Who 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\u00a0you being successful at the task!<\/span><\/p>\nAccording to Wujec, the marshmallow challenges\u00a0reveals a number of lessons\u00a0:<\/p>\n
\n- That prototyping provides the best results – this is what nursery kids know and\u00a0graduate business students and Chief Executives\u00a0don’t. (According to Wujecc, kids also spend less time \u00a0jostling for power?)<\/li>\n
- Teamwork and diverse skills provides the best results – with specialised and facilitation skills leading to success<\/li>\n
- Incentives have a negative impact if people have low skills (and don’t know about the above). If they do, the effect is reversed.<\/li>\n
- And last, but not least, beware of hidden assumptions in our attempts – that marshmallows are light and easily supported for example<\/li>\n<\/ul>\n
We also introduced this video ‘Leadership from a dancing guy<\/a>‘ to the group ‘ by watching a movement happen’.<\/p>\n
Connecting up<\/strong><\/p>\n Music is a great connector. Our icebreaker – to get everybody talking, relaxed and to get to know each other just that bit little more – was to get group members to talk in pairs about their favourite songs. I think we repeated this 3 times.\u00a0People 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 and their experiences of seeing them live. I also loved finding out that Louise’s family had Team B songs to keep them gee-ed \u00a0when they needed to be. Brilliant!<\/p>\n Rikke was in her element as\u00a0DJ, finding some of them on spottily or youtube for the bigger group to listen to and share.<\/p>\n Last session’s homework – feedback from group<\/strong><\/p>\n OK, this lasted WAY beyond the time allotted 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, it left Rikke and I as facilitators a bit stressed as we had to adapt and re-jig the programme to accommodate this!<\/p>\n The homework as based around the idea that online resources for people with heart failure are not particularly good. The good gets mixed in with the bad and the accurate with mis-information. Also:<\/p>\n Effectiveness of different search terms?<\/p>\n Resources we like:<\/p>\n Resources we don\u2019t like- and things we want more of<\/p>\n Our\u00a0group\u2019s\u00a0experience-\u00a0and what they think is most important!<\/strong><\/p>\n Heart failure is not a disease, but a response to something else. The current situation has to change to achieve earlier diagnosis and appropriate support. This has become the key issue for our group.<\/p>\n The group feel that GPs need to be the lynch pin for person-centred care, \u2018but they don\u2019t look into your medical history properly\u2019 – so people may not be properly diagnosed and medically managed (and may even be on the wrong medicines)! \u2018GPs aren\u2019t joining the dots!\u2019 This is made worse by there being \u2018lots of wrong information out there!\u2019 \u2018Fluid on legs\u2019 may lead you to a self-diagnosis of heart failure, but it may be other things and not be heart disease (although the information doesn\u2019t tell you this). Louise B spoke of her husband\u2019s heart failure being missed time after time. \u2018He passed all 6 tests- maybe because he was a fit guy\u2019. It was only by going to the British Heart Foundation who gave him a table tilt test, that he finally got a diagnosis (and a pacemaker before it was too late)!<\/p>\n Clearly, fear can be a barrier to get people to go to their GP too! We need accurate information, a checklist even, without scaremongering people. We want to provide a positive message that if you do <\/em>have heart failure there are things that you can do! And according to our group members, that shouldn\u2019t automatically mean being advised to give up your job \u2013 that can lead to depression!<\/p>\n Often it\u2019s only when people meet a heart failure nurse that things fall into place. However, the heart failure nurses can only do so much and are overstretched. Plus, their focus is not on prevention. By this point, things have advanced and we may have missed opportunities to stop things getting worse! Ian and Margaret\u2019s own experiences of attending the cardiologist every year for 25 years was that there was little they could do for themselves that would make a difference. In hindsight, they believe this was not the case and they missed opportunities to keep themselves well to avoid going down the heart failure route. Margaret\u2019s son, who has the same inherited condition, has the benefit of her hindsight and is keeping fit and on the right medicines.<\/p>\n Health literacy can also be a big problem. There\u2019s no consistency around receiving written information and patients aren\u2019t good at knowing the questions to ask!<\/p>\n Peer support can be really valuable, however, people also worry about being bullied and stigmatized if identified as a \u2018heart failure\u2019 person \u2013 just as young people who are obese worry about being seen doing exercises with other obese kids and may rather hide at home!<\/p>\n Is it all about better education?<\/p>\n In summary, are there three key aspects?<\/p>\n This led the group to identify what was needed, namely…….<\/p>\n How do we support or challenge GPs \u2013 and maybe practice nurses too?<\/p>\n The group discussed that this is in the context of:<\/p>\n Revisiting community mapping<\/strong><\/p>\n This part of the day was to explore the content and functionality of local information \u00a0that was already available.\u00a0As we’d already\u00a0covered 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\u00a0to do around improving local online information for people with heart failure.<\/p>\n \u00a0Developing \u00a0plans for what we want to pilot\/trial<\/strong><\/p>\n We started out from the basis that by the end of today we wanted \u00a0to AGREE ideas that we wanted to test\/trial. Ideally, a minimum of two and maximum of four, with responsibility for delivering them shared across the group and involving both professionals and non-professionals.<\/p>\n The group were reminded:<\/p>\n We also took some time to consider What we hope to achieve<\/a>\u00a0and earlier\u00a0Potential Improvement Ideas<\/a>\u00a0and where we had got to last time.\u00a0Rikke re-presented the ideas we had formed at the last session – with the opportunity to amend\/delete or add to these.<\/p>\n Interestingly, the discussions we had had earlier that morning had really shifted on the group’s\u00a0thinking – very much away from peer support groups for example, to focusing attention on achieving earlier diagnosis and raising awareness.<\/p>\n Next step – agreeing ideas to test and setting up working groups<\/strong><\/p>\n These are the\u00a0ideas the group came up with instead! 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!<\/p>\n At this stage we split the group up into three smaller groups to work on the three ideas identified!\u00a0We asked them to complete the Template<\/a>\u00a0provided (after taking them through this). Each group was then asked to provide feedback to the bigger group – sharing their plans and inviting comment, feedback and taking the opportunity to ask for any extra help they needed!<\/p>\n The ‘missing’ fourth idea, will be improvement of North Lanarkshire Council’s online resources, working with individuals in the group to improve local information.<\/p>\n Last, but not least, we invited people to allocate themselves to a Working Group to take these ideas forward from planning into implementation. People were encouraged to be on more than one Working Group if they wished. So, they were free to reassign themselves following feedback if they had energy and enthusiasm for an idea.<\/p>\n <\/p>\n Homework and plan for next meeting<\/strong><\/p>\n As homework we encouraged each group to be in touch before the next session (on 29 Oct) – physically or by email to try and takes plans forward.<\/p>\n As for the next meeting, we felt this should include<\/p>\n The group was happy with this but wanted to include what would happen at the end of the project to the programme.<\/p>\n Feedback and evaluation<\/strong><\/p>\n All smiley faces (10 out of 10 folk). \u00a0Sorry I didn’t get everyone into the picture!<\/p>\n What went well?<\/p>\n What didn\u2019t work so well?<\/p>\n What will you take away from the day?<\/p>\n <\/p>\n Chest, Heart and Stroke are inviting feedback on two options for their new look newsletter: Newsletter 1<\/a>\u00a0and Newsletter 2<\/a>\u00a0(or\u00a0options 1 and 2). The deadline is Friday 3rd October<\/strong>, so get your views in quick by completing this survey!<\/a><\/p>\n OPTION 1<\/p>\n OPTION 2<\/p>\n Here’s our Programme<\/a>\u00a0for the day.<\/p>\n Goals for the day<\/strong><\/p>\n Connecting up<\/strong><\/p>\n Our plan had been to get the group to share in pairs (then move onto a new partner) top tips for staying well. However, we had a few drop outs, several last minute. We only found out on the day that one of our group was being treated for another illness, but would return to the group next time.\u00a0Another had suffered a close\u00a0bereavement and would most likely not be returning to the group. This meant we were down to three people with lived experience of living or caring of someone with heart failure. Some of our professionals who had made it to the two previous sessions couldn’t make it either: one was on holiday and the other person’s duties had changed so she now saw patients on Wednesdays – the day of our sessions.<\/p>\n This meant we were down to eight on the day, when we had hoped for 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….<\/p>\n As for myself, I wanted to let the group know that I was pregnant with my baby due at the start of November. This meant that I would be with them for\u00a0one 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.<\/p>\n So…instead of working in pairs, \u00a0we formed a circle by drawing our chairs together in a ring. We used this time\u00a0to 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. The two facilitators- Rikke and myself – were included in this. Should you always remain neutral and outside the group? Possibly not, as the group has a relationship with us too.\u00a0We bring ourselves to every meeting,\u00a0while conscious that it is the group’s job (not ours) to provide the content \u00a0for discussions that will shape and drive forward what\u00a0it is they do!<\/p>\n Sharing our stories \u00a0felt very personal – at least it did for me – and 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.\u00a0Strangely, we do that with the other Keeping it Personal group, not this one… Note to self…<\/p>\n Insert videos<\/strong><\/em><\/p>\n We asked for permission to film and share these videos.<\/p>\n <\/p>\n Recap on person-centred care and support: the power of pictures!<\/strong><\/p>\n We felt it was important to ground people in what was understood by person-centred care and support before moving on in the day to identify improvement ideas we wanted to trial. Last time, we have devised a task to get people to come up with their own 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 (see previous blog post to watch). Below are the \u00a0posters they produced.<\/p>\n However, this time, we wanted to try using\u00a0pictures to sharpen and personalise those meanings. We gave people a choice of 20-30 images and asked them to choose which ones ‘spoke to them’ about person-centred care and support.\u00a0Most communication, as we know, but can forget,\u00a0 is non-verbal. It includes gestures, facial expressions, eye contact, body language and touch, but \u00a0it also includes pictures. As the adage goes, “a picture is worth a thousand words” – in some situations….<\/p>\n After people had chosen a\u00a0picture,\u00a0we asked them to share what it meant to them… (insert videos)<\/strong><\/em><\/p>\n This proved quite powerful and was also a task that people enjoyed.<\/p>\n <\/p>\n Last session’s homework<\/strong><\/p>\n For homework, everyone had agreed\u00a0to identify resources\/supports for the community mapping exercise we were about to do. We shared the information provided by those not able to attend today’s meeting. This included\u00a0information about the Motherwell Locality Support Service (Disability) and \u00a0Making Life Easier <\/a>– an online service offering advice, information and direct access to simple pieces of equipment and adaptations for people living in North Lanarkshire.<\/p>\n Several in the group agreed that these looked to be useful services, but questioned why they had never heard about it before – either directly, \u00a0by being signposted by practitioners\u00a0or through doing online searches?\u00a0‘Whose job’ was this to make sure people knew? How did we stop people being passed around the houses when they were trying to get in touch? Did we need named contacts? Why weren’t these services effectively identified through online search engines? And then there were the services people didn’t like so much or weren’t so relevant e.g. American sources of information on heart disease were potentially confusing as provided in a different context and other sources. Other sources were deemed ‘too full of jargon’ (North Lanarkshire council website), ‘too negative’ or, provided out of date \u00a0information about life expectancy following diagnosis which was scary and damaging!.<\/p>\n Issues raised<\/p>\n Everyone seemed raring to get to the community mapping!<\/p>\n Mapping\u00a0community\u00a0assets<\/strong><\/p>\n We set out to map the assets we had locally. But what do we mean by community assets? These can be resources, places, activities, businesses or services \u2013 as identified by the people who use them\u00a0in helping them stay strong and well.<\/p>\n We broke the group into two and asked them to use a traffic light system, writing down \u2018assets\u2019 and plotting these on large printed maps of the North Lanarkshire area:<\/p>\n Both groups explored the existing assets in great depth, with people learning from each other what assets make a real difference in their lives and what types of services and activities would enhance the area. Post-it notes were place accurately on the maps to provide an accurate overview of the distribution of assets in the area.<\/p>\n After that we brought the two groups back together and looked at similarities and differences. Rikke expertly facilitated the discussion around what the maps were telling us. They looked quite different, and maybe one thing they were telling us were that different group members were\u00a0expert about ‘their own patch’ but not others. For example, those who lived in Wishaw knew a lot more about what Wishaw has\u00a0to offer than they did about Motherwell. Alison\u00a0mentioned that Voluntary Action North Lanarkshire<\/a>\u00a0and Voluntary Action South Lanarkshire<\/a>\u00a0had completed a mapping exercise for voluntary organisations – with searchable\u00a0info base\u00a0and locator tools. We resolved to look at this next time\u00a0and include this data.<\/p>\n As a group we also touched on\u00a0how and when this information could be used \u2013 exploring issues of access; mediation; maintaining up-to-date information and responsibility for doing this. We talked about\u00a0ALISS\u00a0<\/a>as one way of doing this. ALISS \u00a0describes itself as a \u00a0\u2018local information system for Scotland\u2019 for health and wellbeing resources. \u00a0It\u2019s searchable by keyword, location or within a certain mile radius that you can set. Plus everyone can add to it, describing resources in the words that they choose. Whether or not North Lanarkshire Council\u00a0could produce an online map was also mentioned as a possibility worth further exploration?<\/p>\n Introducing approaches to improvement<\/strong><\/p>\n We divided our group into two mixed groups of four and set them the Marshmallow Challenge<\/a>. It’s described by its inventor, Tom Wujec, as ‘a\u00a0design exercise that encourages teams to\u00a0<\/span>experience\u00a0<\/span>simple but profound lessons in collaboration, innovation and creativity.’<\/span><\/p>\n The task is simple: in eighteen minutes, teams must build the tallest free-standing\u00a0structure out of 20 sticks of spaghetti, one yard of tape, one yard of string, and one marshmallow. The marshmallow needs to be on top.\u00a0There are also some rules<\/a>\u00a0to 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!<\/span><\/p>\n It’s been repeated many times with different groups, revealing surprising lessons – highlighted in these\u00a0summary slides: marshmallow challenge- lessons<\/a>.\u00a0\u00a0Who 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\u00a0you being successful at the task!<\/span><\/p>\n According to Wujec, the marshmallow challenges\u00a0reveals a number of lessons\u00a0:<\/p>\n We also introduced this video ‘Leadership from a dancing guy<\/a>‘ to the group ‘ by watching a movement happen’.<\/p>\n\n
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Chest Heart and Stroke want your feedback<\/h3>\n
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20 August 2014 – Third meeting of the group<\/h3>\n
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