Summary
The project was for people with profound and multiple learning disabilities and their families. It provided purposeful and meaningful activities in person in Dumfries and Galloway, Forth Valley and online for families across Scotland. The project brought families together and provided fun, friendship and opportunities to be involved in a wide range of activities that connected communities and supported them to develop resources that could then be shared with others.
What Connecting Communities did
Weekly online art and music sessions were delivered and family carers particularly enjoy the time they have together at the Makaton choir sessions. Monthly weekend friendship, activity and book club events took place in Forth Valley. The book club played a central part alongside another funded project PAMIS was undertaking in the area and proved central to engaging with the wider community to show how books and stories can be created and adapted to enable communities to develop resources that can then be accessed by families at any time. Having this opportunity means that families can have the opportunity to create friendships by joining the monthly club but creating stories in communities also means they can access the resources anytime as a family. As this was a new area for us we identified families through the local school who invited families in to meet with us and from there the club grew. We called it the Story Squad and we took our books and stories to a variety of venues around the area. We told stories at Blair Drummond safari park, The Japanese Garden at Cowden and in Community Halls across the area.
We undertook similar work in Dumfries and Galloway, in the more rural area of Wigtown at Kirroughtree Visitor Centre. This was a very different experience with it's own challenges, being an outdoor venue but one that nevertheless, although challenging in it's own way is one that has huge potential moving forward. Great events were had at both Wigtown Book Festival and Big Dog festival at Moat Brae inn Dumfries.
There were lots of successes, the Edinburgh International Book Festival, offered everyone the opportunity to participate in George Webster's event. The Book clubs offered fun and friendship for everyone as well as the opportunity for carers to feel safe enough to enjoy their favourite relaxation session in a way that was appropriate to them. Also it was nice to be exploring community venues and working with them to begin to develop resources for those families who did not wish to be a part of a group but wanted to spend time together as a family accessing events in the community times that suited them.
What PAMIS has learned
Although we are experienced in delivering this type of project because it was in completely new areas to PAMIS we learnt loads.
1. Reaching out to new families. Families of people with PMLD in many instances are very cautious in their development of relationships with services. They have been let down so many times by statutory services, find themselves in continual battle to access the support they need and so this leads to mistrust. To overcome this we had to initially find innovative ways to identify the children and engage with the families and gain their trust. We involved the children initially through the local school, who provided the opportunity for us to meet the children through a multisensory storytelling session. The school then invited the families to meet with us and this enabled relationships to be built quickly. We also ensured we used local venues for events as this enabled us to build up relationships with local communities as well as to identify appropriate partners that we could work with to support the development of resources and seize the new opportunities this provided.
2. Dealing with unexpected challenges. The challenges in Dumfries and Galloway were unexpected but in the end turned out to be an opportunity to consider a different way of working and to develop opportunities to work with new partners in the local area. The opportunity from Shared Care Scotland to be able to adapt within a project without the fear of failing provided a really safe way to learn and develop. As mentioned in previous reporting we had staff absence in the area, a new community of very remote and rural families and problems with very adverse weather which saw the clubs we had organised cancelled at the last minute.
We had to develop relationships with local residents to keep us safe and they were reporting the blocked roads and paths etc. We developed local links in Wigtownshire to reach families and found groups on social media e.g. the home schooling community which was a new route into supporting children and young people with PMLD. Following 2 cancellations because of the weather we reassessed the situation and decided to look at an alternative model of working.
We spoke with families who were keen to have activities at Kirroughtree and Wigtown and welcomed the idea of a club but also suggested producing resources they could access themselves. This resulted in a community scoping exercise to find appropriate local practitioners who we could support to be involved and deliver a programme that would be suitable for the children young people and their families. We identified a forest ranger and a storyteller and they along with The Wigtown book festival and Moat Brae became our team to support the delivery of a sustainable project. Working with this team we had events at Wigtown Book Festival, and Big Dog Festival which included supporting the new Ice Room, a specialised sensory room in Moat Brae. We felt this was in keeping with supporting the community to begin to include this group in existing activities within their area. Challenging but with positive outcomes.
We also learnt that it takes longer to develop a programme from a distance and that we required highly specialist PAMIS staff to engage and develop effective relationships. Effective and open communication is key alongside negotiation and excellent interpersonal skills. We also acknowledge the skills of others but gently provide opportunities for them to safely engage with our specific skill set and resources. I think we initially underestimated the advanced skill set required and having a senior PAMIS practitioner enhanced this approach.
All the resources developed for this area will be launched alongside a suite of digital resources we are creating. We have in both areas been able to source other funding that will enable us to have the time necessary to further embed this work in communities.
How PAMIS has benefitted from the funding
We hope that the report above highlights the many benefits from the grant for the families we support, their local communities but also for us as an organisation.
We have introduced 25 new families to PAMIS in 2 new geographical areas. This has also supported health, social care and other sector organisations to engage with us and to understand the role we can play in their area. This means we are now present in areas where we know that families need support and our links with services will help us expand this support in the future.
We have developed a new model of PAMIS engagement that we can roll out to other areas in Scotland.
We have supported local communities and venues to consider what they need to do to be inclusive of people with PMDL and their families and this in turn will support a far wider population of disabled people.
We were able to test a blended approach for resource creation which meant that those who could not physically attend any events could virtually contribute in a meaningful way thereby no one was excluded.
The support a family carer has received from being a part of the online art group following the death of her son has been invaluable for her and she attends now every week to support her own well-being.
We have expanded our community resources and activities to help families have a good day out whenever they want to. These are also available to everyone thereby opening up new places to travel to for a great day out or a place to come on holiday to.
This funding has also supported our lifelong learning programme and enabled us to access funds from 2 other sources to further develop this.
The flexibility of the shared care team to enable us to learn from what wasn’t working and to adapt has helped us as an organisation to develop new ways of working. For this we are very grateful.
The project and the lessons learnt has also enabled us to recognise the skills within the team and to acknowledge within PAMIS this expertise. We hope this has positively impacted on the team delivering on this programme and that they feel even more valued and appreciated.
Project Outcomes
Outcome
Everyone has had fun, developed new friendships and have ben involved in a programme of purposeful and meaningful activities that they have enjoyed on a regular basis. The children have enjoyed being involved in the national celebration days and have been involved in the creation of resources that will benefit others. The Story Squad Book Club has become an integral part of ongoing work in Clackmannanshire. The Monthly Book Cub and activity programme also allowed family carers to spend time together. The Story Squad went out and about in the community introducing children and young people to new and exciting places. for example stores were created for The Japanese Garden and families a day out together there. This not only provided a day out for the families but also raised awareness of this group to the public and to the staff at the garden. As a result of experiences like this the Japanese Garden are ensuring that this group are included in activities they will provide in their newly established education centre. The provision in the future of changing places toilet will ensure this is a venue that will include people with PMLD.
Results
This project outcome exceeded expectations in a number of ways. As described above the project took place in Stirling at the McRoberts Centre as well as out and about in communities. The book club became a pivotal and central part of the PAMIS friendship club funded by Clackmannanshire council. As a result the book club has been the catalyst for demonstrating the many different ways that stories can provide a pathway to learning in a fun and exciting way. The Story Squad in Clackmannanshire supported communities to engage with people with PMLD and was pivotal in enthusing them to begin creating opportunities with story in their own settings. The online art and music group supported those that could not physically attend groups or who did not feel comfortable in groups.
In Dumfries and Galloway we had a very different experience. Firstly it is an outdoor experience and we were hampered last year by storms. The Weather, staff absence and the environmental impact of long distance travel for staff from out of the area led us to revaluate how we worked in the area. This will be reported on further in the relevant section. Wigtown Book Festival, Big Dog Festival and Ice Room at Moat Brae all provided opportunities last year and will do so in the future.
Case study
The creation of 4 stories and the provision of the mobile changing place toilet for the Japanese Garden enabled families to engage with a venue in their local area where none of them had been before. The stories provided a fun activity for the whole family. Creating the stories for the garden means that families can return again in their own time and ask to borrow a story to enjoy time together in the garden whenever they want.
All the stories were related to the aspects of the garden so the multi-sensory stories are also a way of everyone learning about the garden and its history in a fun way. Before the Story Squad some of the families were unaware of the garden, some were aware but had never visited and none knew the history of the garden. Now, they all know about the garden, the garden staff know about the families, how to better engage people with PMLD and are more knowledgeable about why a changing places toilet is a necessity in future planning for an information centre The Garden are applying for funding to run an event for children and young people with PMLD on Book Week in November.
Outcome
Carers of children and young people with PMLD have always told PAMIS that great days out together with the whole family is something they rarely get the opportunity to do. There is very little opportunity for them to do things together a as a family and the book club enabled them to do this and developing resources in the community enables them to have freedom to spend time together as a family when they want to.
Great days out in the community are not a replacement for carer respite but they provide vital time for creating and making friendships with others in the group and at the book club we provided other activities and opportunities for carers to relax. Music and art groups online also offer the opportunity to engage with people across geographical areas as well as offering the opportunity to be involved in national events too that they may otherwise not be aware of.
Results
The outcome was fully achieved as we had families who wanted to meet at the club but others who felt the group setting was not for them and they preferred the idea of visiting a venue as a family and spending time as a family at times that suited them. This is where working with community is critical and is why the resource development in the community is crucial. People enjoy organised events but want to know there are resources in communities and places they can go themselves at times suitable for them.
This project that blends online, groups and community opportunities is vital in delivering a project that meets everyone's needs. As a result online resources are being developed to enable families and communities to have access to to activities they can do whenever they want and wherever they want. In Kirroughtree families revealed what was required in the area moving forward was online resources that they could access anytime.
Case study
At the monthly book clubs we aimed to have a variety of opportunities for everyone. Before the clubs there was not really any opportunity people with PMLD and their families to come together. At one club it was observed that one family came with their child with PMLD, a staff member, a sibling, mother and gran. During the book club sessions it was observed that mum and gran left to go and spend time together having coffee and a cake. This was time they rarely got to spend together so it as lovely to see. Another family carer enjoyed a relaxed impromptu therapy session that she reported she used to attend this particular therapy but hadn't done for some time.
Outcome
The lack of appropriate purposeful and meaningful activities and opportunities in communities that can be accessed by people with PMLD often causes isolation, loneliness and feelings of exclusion, not only for the children and young people but for their families too. To have access to activities that families can enjoy together prevents breakdown in mental and emotional well-being, enhances lives and supports opportunities that will in the future mean the family have memories to look back on. This is particularly relevant for families where the child has a life limiting condition.
Knowing that they have the opportunity to enjoy time together as a family significantly supports their caring role in a number of ways. Through the club the families can meet new people if they so wish, they can enjoy time together as a family, and they begin to feel a sense of acceptance and belonging in their community as they see the resource development being created for them to access anytime they wish. This all supports them to better sustain their caring role as they do not have to think about social accessibility and where they can go altogether and have a family day out. The impact of not having inclusive and social access to activities is underreported when talking about sustainability in the caring role.
Results
The project outcome was fully achieved and following the Plan Do Study Act (PDSA methodology as we went along meant that we responded to the needs of everyone. In Dumfries and Galloway staff absence and illness alongside the weather prevented us from running the club in the way we envisioned. Using the PDSA and consulting with families we identified that is was better to support people who are based in the area to deliver this programme as opposed to PAMIS delivering it themselves. In the storms we had to call people who lived in the area for an update of the blocked forest roads, and we had a lot of families call us reporting that they home schooled their children and their was a lack of fun and appropriate resources in the area for them to access in a meaningful and fun way.
We decided that the best route to supporting these families in this situation was to scope out who we could support the club going forward. We identified a forest ranger and a storyteller that we could upskill and support families in the area. We also worked with Wigtown Book Festival to ensure that two major events took place that people could attend. We worked with two local authors to develop multi sensory stories for both events and also supported Moat Brae and The National Centre for Children's Literature and Storytelling who have installed and amazing multi-sensory storytelling room called The Ice Room. This will be a valuable place in the community for people with PMLD to access when they wish. Although both clubs were very different and unseen problems in Kirroughtree nevertheless the project overcame this to support families to have what they requested and required in each area and by listening and adapting to the evolving situation the project the project supported families in their caring role in the ways that were appropriate to them .
Case study
Responding to support needs. (Kirroughtree case study)
Because Dumfries and Galloway is a vast rural area there were no existing resources or purposeful and meaningful activities for children and young people with PMLD. Kirroughtree visitor centre in the Galloway forest was chosen because it is a beautiful outdoor centre and it has a changing places toilet. However staff absence and poor weather conditions meant we had to reconsider how families were supported. Phone calls to discuss the weather conditions with people local to the Kirroughtree area and families who lived in the Wigtownshire area, meant we had to reconsider what was required in the area.
We consulted with families remotely and it was determined that for the future we would identify people in the area that could be supported to undertake delivering activities to the families. Families reported that resources and activities would not only support them but because a large proportion of families home schooled they felt they could do so much more with resources they could access themselves. Though partnerships with Wigtown Book Festival and The Wild Goose Festival we identified people local to the area and we began working with them to develop resources they can then use in the area. The project also worked supporting Moat Brae and we will be storytelling at the launch of The Ice Room soon. This case study is included to demonstrate how through innovative thinking and consultation with families the project had a positive impact for the families in the area and it is one that will continue to grow and develop in the future.
Outcome
The project has been delivered remotely, face to face and using a blended approach. Every area has been different but every area has delivered improved well-being for everyone. Given that both book clubs took place in two areas where there was no purposeful and meaningful activities the project delivered improved outcomes for everyone.
The blended approach of online and in person activities provided opportunities for everyone and while they were different in their approach the learning from both has been invaluable. Children have been involved in national celebration days and their families and schools have taken an active role which has greatly enhanced the wellbeing of all. Children and young people have had wonderful opportunities to engage locally and nationally and this has greatly enhanced their confidence and social skills.
Families have been able to relax and enjoy time together. communities have learned new skills and embraced and welcomed the opportunity to socially include these children and young people. The book clubs have offered opportunities that will live on beyond the life of the project and this gives families hope for the future. Having all this embedded within the communities coupled with online resources provides ongoing improved wellbeing for everyone.
Results
The delivery and innovative working of this project demonstrates that wellbeing of people with PMLD, their families and carers does not have to stop when the project ends. By working with communities as part of this project we have ensured that there is an appetite for the communities to provide purposeful and meaningful activities that can provide a great day out for people with PMLD and their families. We are developing other resources within another PAMIS project and with our new relationships within the communities will ensure that the work will continue beyond the life of the project. This in itself means improved wellbeing for people with PMLD and their families, knowing that they can go somewhere whenever they want and that there will be meaningful activities available. This in itself is a huge improvement and contributes significantly to the wellbeing of all. It also provides the foundation for future opportunities for lifelong learning. An example of this is the resource development by living history experts in a community hub. Families have commented on their joy of being involved, and our photos of the activities as well as discussions with families have demonstrated the improvement in well being.
Case study
Children at the book club became involved in creating a story based on the work of the online art club. For this ambitious project we blended the work of the online art group with the story created by the children and young people at the book club. Choice making was the chosen medium for the children and they made scarecrows and chose the colours of the clothes and the method of scaring the crows away. This is an ongoing piece of work and was a wonderful collaboration with the children and an our artist who is helping to illustrate it for the children as part of their resource development.
Children, young people and their families have experienced improved mental health, reduced isolation, felt included and valued though involvement in the many activities that have been created for them. They have spoken about the fact that this is the first time they have had something specifically that the whole family can enjoy, that they felt safe in knowing the activities will be appropriate for their child with PMLD and have enjoyed seeing the positive impact on that child as well as the siblings. This resource when complete will be showcased alongside other resources the groups have created. They are all rightly very proud of their achievements and they have had fun along the way. In one year they have gone from having no purposeful and meaningful activities to not only accessing activities but actively creating them. The resources created will be launched along with others at the end of June.