My Time Family Fun and Friendship Club

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. Venues across Greater Glasgow will have increased awareness of the needs of people with PMLD.

Results

This outcome was achieved in our 11 well-attended ‘My Time’ sessions. Families have highlighted how enjoyable they have found them - and how great it has been for their relative with PMLD to try the different activities on offer. They have commented on how invaluable it has been to have had the support of PAMIS staff, and our enthusiastic team of volunteers, to assist their relative take part in activities, giving family carers a much needed break – and the pleasure of seeing their relative well supported and enjoying themselves. Families have told us on how useful it has been to meet other families, including those from other areas of Greater Glasgow & Clyde, where services (and challenges) are sometimes different. They feel they have benefitted from information sharing, developing natural support networks with families in a similar situation – as well as the chance to relax and take time out from their full-on care roles, while their relative is being well looked after.

Case study

The young people with PMLD at ‘My Time’ have clearly enjoyed meeting up with the other young people who regularly attend – as well as with PAMIS staff and volunteers. We have a great collection of photos which show how engaged the young people – and their siblings - have been in the sessions – and how much fun and enjoyment they have been having. This also includes the volunteers and PAMIS staff who help run the club!

Facilities at the RNIB day centre have been ideal in meeting the needs of our families. It is a safe, barrier-free environment, complete with Changing Places toilet facilities (with adult-sized changing benches and hoists) essential for most of our family members. There is also a dining area, ideal for families to relax in over teas and coffees or lunch, as well as comfy seats throughout the centre.

Activities on offer during the club have included music sessions (including some provided by specialist professionals), rebound trampoline therapy, SOMA motor activities (simple but fun exercises and games that can be done by a person in a wheelchair), arts and crafts, massage therapies (for the young people with PMLD and their family carers) – and a special baking group for siblings. Families have also had use of the sensory room, an ideal place to find calm and relaxation before or after activities – or as an activity in itself. When there has been better weather, families have also had access to the RNIB’s sensory garden.

Feedback from families has highlighted how beneficial it has been for their relative to have been able to try such a range of different activities, and at their own pace – and to have been so well supported throughout by someone other than their family. This has helped the young people with PMLD gain confidence in being with, and being supported by, new people – something which can be a challenge for them as they get older – and a challenge for families to embrace. Some families are fortunate enough to have paid carers already supporting their relative outwith school, but for those who don’t, this introduction to being supported by other adults – and getting to know them – has been an extremely positive thing. By running the club regularly each month, this has also helped build continuity in the lives of the young people who attend – and their families - another essential 'ingredient' when supporting someone with PMLD - and family carers.

Families with more than one child have commented on how helpful it has been to have been able to come along to an activity with ALL their children. So often something that is suitable for their relative with PMLD might not be of interest for their other child/children. Often too, a family carer taking their child with PMLD to an activity needs to focus solely on that child – and is not in a position to then support their other child/children.

Siblings who have attended ‘My Time’ have also clearly very much enjoyed the sessions, and have had fun meeting other siblings. But they have also felt the benefit of being supported by the volunteers at the club, who have been able to give them some much needed 1:1 time, which is so often hard to get within their busy home environments, where the needs of their sibling with PMLD almost always has to take precedence. ‘My Time’, however, has been ideally placed – thanks largely to our great team of volunteers - to provide support to ALL the children and young people who attend, making the experience a hugely beneficial one for all the family.

Families have also highlighted how useful the club has been as an opportunity for them to meet up with other families, including those living in different areas. This has given them the chance to share information and learn from one another. But they have also commented on how nice it has been just to relax and be with new people – having some time out from their care role, which by its very nature, has to take up so much of their daily time and energy.

Being at ‘My Time’ has also given families the opportunity to speak to PAMIS staff about issues they may be experiencing or looking for help with, but which they have not been able to find the time to discuss during the rest of what is always for them a full-on week of caring.

One family carer, who comes regularly to ‘My Time’ with her son, is a single parent who carries, on her own, all the responsibility for her son’s care – including most of the practical care. This Mum has told us how great it has been to have a place to go with her son one Saturday a month, where she can switch off for a few hours, relaxing with a cup of coffee and chatting to other family carers while her son is well supported by our regular volunteers. Because aspects of her son’s care can be quite challenging at times, it has meant a lot to this Mum to be able to take some time out from her full-one care role, and experience even a couple of hours ‘respite’, knowing her son is close at hand if she is needed – something many of our families at ‘My Time’ have echoed.

This Mum also benefits from the relaxing massage sessions the club offers, and which help relieve some of the physical strain of caring. She has also felt the benefits – for herself and for her son – of the relaxation of the sensory room - to find calm and relaxation before or after activities – or as an activity in itself. Again, this is something many of our families would agree with.

By involving music professionals and therapists from outwith PAMIS in the club, and also volunteers from different walks of life (including students from different institutions), we have widened the awareness of PMLD, the awareness of the needs of people with PMLD – and the awareness of the needs of family carers. We have also widened awareness of the work of PAMIS – which is vital if people are going to be better supported in future – and our work is going to be able to go from strength to strength.

Outcome

Families will feel less isolated and may encourage them to support each other more and will be more involved and included in community activities.

Results

Families have highlighted how helpful it has been to meet other families experiencing similar issues - and share concerns. They have felt supported by helping each other find solutions to problems (such as how to manage SDS budgets or recruit staff to support their relative), and sharing information on useful services etc. Families new to PAMIS – who found out about us because of ‘My Time’ - have then become part of our wider Family Support Service, which they can tap into whenever they need specific help, support at meetings etc. All of this has helped reduce families’ feelings of isolation and, in turn, improved their general well-being. The physical relaxation experienced through our massage therapies, sensory room, and simply having some time out from hectic care routines, whilst their relative has been supported by our volunteers to engage in the club’s varied and meaningful activities, has also helped families’ well-being – including the well-being of the young people with PMLD.

Case study

One family, from one of the outlying areas of Greater Glasgow and Clyde, had not previously been linked to PAMIS, as her child attends an out of area school that PAMIS has had less contact with. Attending ‘My Time’ has meant she has been able to meet other families - and has felt part of a helpful, supportive network for the first time, sharing experiences, and having the chance to discuss issues around services, accessible activities, SDS (Self Directed Support) and managing budgets, recruiting and training up staff to support her relative, and numerous other things with other informed families, often from different areas. This family is now a regular at ‘My Time’, and actively involved in the wider PAMIS service.

Another family – also new to PAMIS – joined ‘My Time’ when they were going through a particularly difficult transition after the loss of the Mum. In attending our club, Dad was able to benefit from the natural support networks of the other family carers – where he had, up until then, been feeling completely on his own with the issues he was dealing with, as he hadn’t, until the bereavement, been fully responsible for managing so many aspects of his child’s care.

The siblings too were able to feel the benefit of the 1:1 time available to them from our regular volunteers , taking part in the baking group, and the arts and crafts sessions– but also in terms of simple companionship. The relative with PMLD was meanwhile supported to explore safely the calm environment of the centre, try out rebound therapy for the first time, and enjoy the extra attention provided to him by PAMIS staff and volunteers. This is turn gave the Dad some much needed relaxation time, and a chance to experience the benefits of the massage therapies on offer at the club – for himself and for his son with PMLD.

Families with more than one child have often commented on how hugely beneficial it has been to be able to attend ‘My Time’ with all their children, as so often an activity in the community suitable for their relative with PMLD has not been of interest to their other child/children. Often too, a family carer taking their child with PMLD to an activity needs to focus solely on that child – and is not then in a position to support their other child/children. ‘My Time’, however, has been ideally placed – thanks largely to our great team of volunteers - to provide support to ALL the children and young people who attend, making the experience a hugely beneficial one for all the family – in turn improving everyone’s feelings of well-being – and reducing their feelings of isolation. So it really does become ‘My Time’ – for everyone!

Outcome

Social isolation will be reduced and friendships formed – as well as opportunities to have had access to new activities.

Results

Families have highlighted how useful and enjoyable it has been to meet other families. It has given them the chance to form natural support networks and friendships which they can follow up outwith the club. Young people and siblings have also formed natural networks and friendships. They are clearly delighted when they see the other young people who regularly attend – and volunteers. Several families come to ‘My Time’ with their other children – all of whom are, in effect, young carers because of the care role they carry out within the family home, assisting their parents in supporting their sibling with PMLD. At ‘My Time’, these sibling carers get to try activities they might not have tried before, such as baking, arts & crafts, or SOMA (an activity for people with PMLD but which everyone can enjoy). Siblings also enjoyed talking part in activities along with their relative with PMLD – as with SOMA, multi-sensory story-telling, our 'warm up' parachute games or music activities.

Case study

Several families regularly come to 'My Time' with their relative with PMLD and other children. All of the siblings who came were relatively young - and seemed shy at first to engage in activities and chat to others. But after only a session or two, it was noticeable how they started to relax, enjoyed getting involved in the baking group or arts and crafts, were drawn to the volunteer who was most regularly involved in these activities - and, within minutes of arriving at the club, seemed completely oblivious to what their parent or relative with PMLD was up to! This was a sure sign to us that they felt happy and secure in the overall environment of the club – and were clearly benefitting from it.

Families have often commented on how lovely it has been just to relax at the club and be with new people – having some time out away from their care role which, by its very nature, has to take up so much of their daily time and energy. Sometimes that ‘time out’ has simply involved being able to sit down and enjoy a cup of coffee and a chat – about topics outwith the world of PMLD and caring. A simple thing that so many of us, without such intense care roles, take for granted.

Families who come along to our club with their other children have also commented on how helpful – and enjoyable - it has been to be able to come to an activity with ALL of their children/family together, as so often an activity suitable for their relative with PMLD is not of interest to their other child/children. Often too, a family carer taking their child with PMLD to an activity needs to focus solely on that child – and is not then in a position to support their other child/children. At ‘My Time/’ we’ve seen siblings enjoy some much needed 1:1 time, not only in the fun of the baking sessions and arts & crafts, but sometimes just simply casually kicking a football with one of our enthusiastic and committed volunteers – the sort of activity most parents would love to engage in with their child, but often just can’t manage to, if they also have a care role for a child with PMLD. So another of the huge benefits – and joys – of ‘My Time’ has been that family carers know that the needs of ALL their children are being met when they come to the club– even if only during that one monthly session…

Families have also had the opportunity at ‘My Time’ to try new activities for their relative with PMLD, including specialist music sessions, multi-sensory story telling (story telling with a difference - in which they can really see their relative with PMLD engage and respond - sometimes for the first time), rebound trampoline sessions and SOMA motor activities. Some of our young people with PMLD have tried rebound before – and sometimes SOMA too – but they have not been able to access the activity for some time – or on many occasions - because of the shortage of suitable rebound facilities and trained staff.

Outcome

Families will feel less isolated and will be introduced to activities that they might want to undertake at home.

Results

Families have told us how much they have enjoyed meeting other families, in a relaxed environment. They find out about issues other families are experiencing – or have experienced and worked through. They get to chat with PAMIS staff, and discuss areas of concern they may not otherwise have had the chance to do in their busy ‘carer lives’. They get to know our volunteers, many of whom are students of subjects of direct relevance to our families, such as physiotherapy or occupational therapy. Families have told us that all these opportunities go a long way towards helping them feel less isolated so we know this outcome has been achieved. Families have been able to experience the benefits – and enjoyment – of SOMA, multi-sensory story telling, specialist music sessions, arts and crafts, and the sensory room – with siblings having their own baking sessions. There are many ideas here that families can adapt and ‘bring into’ their own home – having tried them at first hand at ‘My Time’.

Case study

One family who regularly attends ‘My Time’ has multiple care roles, including for her son with PMLD – and for her husband who has major health issues. This parent has regularly praised PAMIS staff and volunteers at 'My Time' for the support they provide to her son - and to her. She has spoken highly of the benefits they both receivedfrom the club, as there are very limited social options available at the weekends to her son - which then puts more strain on the Mum. Also, because her son has some mobility – but no sense of danger – the club's safe and barrier-free environment enables him free movement to explore and be involved in what is going on, whilst allowing his Mum the chance to relax and socialise, have a massage treatment, and sometimes even just sit quietly on her own to relax with a cup of coffee.

Families have told us how much they have enjoyed – and benefitted from - having the chance to meet up with – and get to know – other families, in a relaxed environment, over a cup of coffee or lunch.

Often families are from different areas of Greater Glasgow and Clyde or North Lanarkshire – and their children with PMLD are of different ages. This has given families the chance to talk about, and hear about, services in different areas – and issues around the different ages and stages of their relatives, including around the very challenging period of the transition into adult services.

The chat between families has not always been around the problems in life, however – or the challenges of their care role. Often it’s been a chance to share positive experiences, information about different accessible leisure activities they’ve tried or accessible venues they know about. It also includes the normal, sociable interactions that so many of us without such intense care roles take for granted. But the families we support have a full-on 24 hour care role for their relative with PMLD - and for those of them fortunate enough to have a job and be able to get out to work, many consider this their only ‘respite’ or break. So opportunities for meeting other families, such as we have been able to provide at ‘My Time’, have proved invaluable.

Families have also been able to try, many for the first time, SOMA motor activities – simple but fun exercises and games that can be done by a person in a wheelchair – even if they have very little movement. SOMA can provide huge physical benefits to a person with PMLD who otherwise has little opportunity to practise muscle movement and stretching, or small exercises in holding and gripping things. ‘My Time’ has been an ideal place to introduce families to SOMA – and to give them ideas on how they might be able to adapt such activities to do similar things with play in the home or garden – even involving the whole family.

Families have also had use of the RNIB’s sensory room, an ideal place to people to find calm and relaxation before or after activities. Some families have then looked to source their own sensory toys and equipment for their relative to use at home.

By providing multi-sensory story telling sessions, families have been able to see first hand the benefits of involving their relative with PMLD in a simple but stimulating activity. Families have also been delighted to share in the sheer pleasure that their relative has shown as they have followed the simple story line being related by the story teller – andhave been able to touch the various sensory stimuli used to ‘bring the story alive'. This is certainly something that families have looked to be able to do in their own home, potentially also involving borrowing one of PAMIS’ own multi-sensory stories as a basis for this. It is also something that can be enjoyed by siblings too - so potentially an activity for the whole family to be part of.

By bringing in a massage therapist to provide mini massage session to ‘My Time’ – for the person with PMLD and the family carer – some families have experienced for the first time some relief from the physical effects of caring. But it’s often not something that they have tried for their relative with PMLD – yet it can also provide many lasting benefits, such as helping the person’s posture and sleep.

‘My Time’ has provided a range of ‘taster’ sessions for families to try – with support – and which many families want to try again in their own time.

Also, by bringing in music professionals and therapists to 'My Time' from outwith PAMIS, and volunteers from different walks of life (including students from different institutions), we have widened the awareness of PMLD, awareness of the needs of people with PMLD – and awareness of the needs of family carers. And we have widened awareness of the work of PAMIS – which is vital if people are going to be better supported in future – and our work is going to be able to go from strength to strength.