Summary
PAMIS delivered a number of activities in the form of creative respite for people with PMLD (profound and multiple learning disabilities) and their family carers. The activities offered by PAMIS included The Friendship Club and Sporting Opportunities for Motor Activities (SOMA).
What Fun and Friendship Club in Fife did
PAMIS delivered a number of Friendship Clubs throughout the year with more Clubs being available throughout the summer holidays. The Friendship Club was held between 11am – 1pm on a Saturday in Kirkcaldy. The Friendship Club was available to families on the PAMIS database or anyone with PMLD. The Friendship Club was held 9 times from April 2018 – April 2019 and each Club was very well attended.
The beneficiaries of the club were young people with PMLD and their family carers. The Friendship Club involves families coming together to socialize and relax together while enjoying sensory storytelling and arts and crafts. The Friendship Club helped improve social opportunities for people with PMLD and their families. Families have often described a lack of opportunities to take part and socialize in suitable activities; as a result many families are at risk from suffering from social isolation.
The Friendship Club was very successful, each club was well attended and the feedback we received was extremely positive. Successful elements of the club included:
• The Friendship Clubs were beneficial for the both carers and cared for person
• The Club has allowed parents to meet new people and develop friendships, this allowed families to share information and support each other.
PAMIS also delivered 4 SOMA sessions for people with PMLD in Dunfermline and Cowdenbeath. The SOMA sessions are especially devised to help people with PMLD develop their finer and gross motor skills.
This activity was identified as a need as many people with PMLD have underdeveloped motor skills which affect their quality of life. When taking part in SOMA people with PMLD have the opportunity to take part in a safe and suitable activity which aims help improve their fine and gross motor skills. The benefits of SOMA include:
• Development of fine and gross motor skills for people with PMLD.
• Developing hand eye co-ordination, problem solving skills and balance.
• Families can take part in activities together including siblings being able to enjoy games while working with their brother/sister.
• SOMA was held in a leisure centres which promotes a more inclusive society
What PAMIS has learned
PAMIS learned from the activities the value of social groups for people with PMLD and their families. During the planning of the events there was often emphasis put on the activity or entertainment for people with PMLD. The feedback we received was that while the events were all suitable and appropriate for the person they cared for, the highlight for many of the families was being able to socialise and take part in an event as a family. Families also commented on how much they valued meeting new people in an appropriate and non-judgemental environment.
During the planning of the events PAMIS worked with schools and day service to make sure the information was received by families who are in the most need of support. PAMIS staff also met with staff in organisations including schools, regarding joint working and what would be the best way to support families together. Working in partnerships helped PAMIS develop professional relationships with other organisations and allowed new families to be referred into PAMIS.
An unexpected challenge faced during the Friendship Club and SOMA activities were finding a venue which was suitable. PAMIS staff booked facilities which were fully accessible, including a changing places toilet, while large enough to have enough space for large wheelchairs and the carers to feel comfortable. The building and car parking facilities also had to be suitable for people with PMLD and their carers to access. The popularity of the events meant the venue we used to host the events had to be reasonably large and twice PAMIS Fife had to relocate venues as we had outgrown the venue we had booked.
PAMIS Fife managed to reach out to new families through the activities and training offered by PAMIS staff. PAMIS staff met a number of carers and professionals while running training courses on Bereavement and Loss and SOMA. Staff running these courses allowed relationships to be formed and introductions to be made which helped PAMIS service grow.
How PAMIS has benefitted from the funding
How PAMIS benefited from the funding was how much we were able to work with families in a person centred way. The events funded by better breaks allowed us to meet families to talk to them and support them in a relaxed non judgemental environment. This helped PAMIS as an organisation as it meant we could support the families in the most efficient ways which helped strengthen the charities reputation and gave families confidence when recommending PAMIS to other families.
Having learned from the events this allowed PAMIS staff to build skills to ensure any future events will meet the families needs. The success of the Friendship Club and resulting establishment of parents steering group has meant PAMIS and parents are looking at future funding applications and fundraising together. The success of the clubs and changing of venue has proven to be beneficial as PAMIS Fife has built a far better knowledge of what venues are available and suitable throughout Fife. It has also proved PAMIS staff with opportunities to meet with venue management to highlight what needs people with PMLD have.
Project Outcomes
Outcome
Young people with PMLD and their siblings will have fun in a safe and nurturing environment and their parents meet regularly. Families will feel less socially isolated and friendships will be formed.
Results
This outcome was achieved as the activities provided families with the opportunity to experience a warm welcoming environment during suitable events for people with PMLD. Families commented that they feel safe and confident at PAMIS events which are always held in a non-judgemental environment. Suitable activities and events are difficult for families to find and take part in, PAMIS activities provided opportunities for people with PMLD and their families to meet new friends and socialise.
Parent’s feedback from the activities has shown the events were largely successful in meeting this outcome. Feedback included:
• Families have developed friendships with each other.
• Families NOW meet outside of PAMIS events and have been able to offer support to each other.
• Families commented they suffered less stress knowing there were suitable activities to take part in.
• Feedback has highlighted families feel relaxed and comfortable prior attending a PAMIS event.
Case study
Feedback from one carer included how much she believed her confidence has increased and how happy she was with the atmosphere in the Friendship Club and SOMA sessions. Feedback included how much she enjoyed being around other carers and how important it is for her to be able to share her daughter's accomplishments and for them to be recognised . Prior to attending events she often felt a lack of confidence and that her daughters achievements were often not understood, as they seemed insignificant to others. Having more confidence and feeling like she had been heard has developed her confidence to try other social groups in the community.
Outcome
Social isolation will be reduced and friendships formed as well as opportunities to have had access to new activities.
Results
This outcome was met as family carers have had creative respite opportunities they would not have had if PAMIS events were not available. The events have offered families a regular opportunity to be social and enjoy the suitable activities within a suitable environment.
The activities being offered reduce stress and anxiety in parents as they know they have events they can take part in and their child will enjoy. The events have offered parents the opportunity to meet other professionals including, physios, storytellers and music therapist, this allows families to chat informally to the professionals while potentially gaining knowledge and transferable skills.
Case study
This outcome showed positive changes in a carer’s life who has always felt a sense of anxiety around the school holidays. The anxiety largely comes from the worries and pressures of finding activities suitable for her son can take part in. Having The Friendship Club and SOMA available allowed her to feel more relaxed as the holidays approached as she knew the activities were going to be suitable for her son.
The professionals and families the mother has now met through PAMIS activities have allowed her to access more facilities and activities she did not know about before. The PAMIS activities have been a great networking and social opportunity for share information and ideas between families.
Outcome
Families will feel less isolated and will be introduced to activities that they might want to undertake at home.
Results
Family carers often commented the activities and events allowed them to feel relaxed and enjoy meeting new people. Families met other professionals such as teachers, physios, music therapist, story teller and rebound therapist meeting these professionals helped them receive support. As a result of taking part in PAMIS activities family carers could take part in activities at home or had new options for activities through knowledge and support they had from professionals.
Families also commented on the friendships they developed and how these friendships have enabled families to share and develop ideas with each other. The ideas included sensory resources to purchase or sensory crafts to make themselves .
Case study
One family carers feedback from the activities was that the PAMIS activities have enabled her to learn transferable skills which she uses in the home. Activities like SOMA and sensory story telling allow families to learn skills to use with their children. The carer feedback included details of how she now uses storytelling and a way of communication in the house for relaxation and in preparation for events like bed time or taking part in an activity.
The carer commented that PAMIS activities allow her to meet other carers and helped her confidence to try new activities for both herself and her son.
Outcome
Social isolation will be reduced and friendships formed as well as opportunities to have had access to new activities
Results
The Friendship Club and SOMA activities provide families with opportunities they would not have if these club didn’t exist. The well being of the young people and their carers is improved through a reduction in social isolation and an increase opportunities to take part in meaningful cultural and social activities. PAMIS activities are designed to make sure everyone can take part regardless of physical impairment or intellectual disability. PAMIS activities are also held at fully accessible venues, with a changing places toilet; this gives families confidence to attend and travel to events.
Case study
The Friendship club allowed a safe space for people with PMLD to develop their skills such as turn taking, communication and being able to cope with busy environment. Feedback from one parent included that she was now able to take her daughter to a coffee shop and out for lunch as she was more confident her daughter would be able to cope with the environment.
This was a significant change in behaviours of the young person and it allowed the carers to have more opportunities to attend regular events and facilities where previously the environment would have been too busy for her daughter to cope.