Parent Carers Time for Me
A story by North Argyll Carers Centre
We ran a monthly peer support group for parents of children with disabilities. We met at Go Bananas, a soft play space.
There is also a closed online group run by parent carers. We have created more opportunities for flexible family time, children accessing activities and therapies for carers.
What Parent Carers Time for Me did
We ran a monthly Parent Carers Group, holding the Group at ‘Go Bananas’, and booking the to soft play space for the morning to enable children to come when available. The venue is central, with parking and provides a relaxing environment for those attending. The group was supported by a Parent Carers Support Worker who attended all the groups and offered support and information anyone attending. It is also a link to wider carer support and community-based services as we have signposted to various organisations such as SDS information through CarrGomm Community Contacts team.
We also arranged for speakers to come to the group, and fedback issues raised by the group to local and national organisations when appropriate. As one of the parents said “We can discuss anything from how we didn’t sleep last night to what’s happening on Coronation Street!” There is also an online group for Parent Carers, this is a closed group and we encourage carers connect through the group. The Parent Carers Group manages this group, and if offers support, information, links, laughter, a safe space to roar at times, “they understand, others don’t get it, what it’s like”. North Argyll Carers Centre can use the group also to help draw attention to information we receive and it’s a great platform that helps us organise activities with the group.
Relaxation therapies, as part of our development of the group, in response to parents requests we have offered flexible therapy vouchers and family time vouchers. This is a direct request from carers who have found it difficult sometimes to take advantage of centre-based therapists as due to their caring role (and at times balancing this with employment). We offered access to time with a therapist of their choice ensuring that as many carers access relaxation support as possible.
Family time together, we offered family times together through a blended approach of family group time together eg. A trip to Kincraig Wildlife park where families came together to have a brilliant day out. We also arranged time out for parent carers and had a group trip to relaxation and wellbeing spa.
What North Argyll Carers Centre has learned
Project planning works best for us when we place parent carers and their children at the heart of project development as they are the ones who should benefit from the services provided. We have used learning from past projects and developed new offerings to build a better service that meets the needs of the parents and children, and is recognised by local health, social care and education professionals.
We found in the past parent carers were unable to access some of the offers of support so with extra funding we were able to think differently and come up with new ideas based on what families told us would make a difference and what health professionals observed from their perspective.
The ability to work with other organisations such as schools, social work or other organisations in the community has helped as they have and do signpost families who they think would benefit from the service. This also applies to reaching out to new families. Our local social work department and local paediatrician advertised on our behalf but also signposted a family and a downs syndrome group to us who they felt would benefit from the service.
We continue to be creative and questioning in our approach as we have seen the spectrum of support that each family needs and requests that one size does not fit all.
How North Argyll Carers Centre has benefitted from the funding
The funding and support from Better Breaks has helped us build on our skills and knowledge as an organisation. The funding has helped us build a service that is more fit for our service users. The service is be better appreciated by both the young people and their carers and they seem to get far more out of the service now that we can support tailored experiences around their own needs. The evidence from the developing service will ensure that we can use this to lobby for more funding and as we are currently in discussions with our HSCP regarding carer support, we have evidence of impact of creative short breaks and support for parent carers and their children. Through ongoing monitoring and evaluation methods and a conversation based approach we have learnt so much more about needs of parent carers and their families. This information has enabled us to start conversations with local leisure facilities in support of inclusive practice and work together to develop new offerings for families locally.
Families will have had opportunity to have time together to share fun times, increase both adult and children's social networks.
We believe the outcome has been achieved in that we have delivered a number of key services to enable this to happen. By offering tailored activities to families that suit their needs at a time and place that suits them we have evidence of improved wellbeing for those supported. We have offered a blend of group run activities such as a day out to Kincraig Wildlife Park for families, giving the whole family the opportunity to come together and parents to meet and have fun together and we provided transport for these events. New parent carers have been welcomed increasing their social circles. Children have had the time to access activities with their peers and have continued to build social networks and parents can relax knowing they are being supported and having opportunities to come together. Families have taken up opportunities to have time away together and tried new activities and been there for all their children. Spa days have seen fun and laughter and relaxation.
Carer A lives with her husband and 2 children, her son B is deaf and has ADHD. Carer A worries about school holiday times as B thrives on routine and contact with other children 'he is always on the go, he is a handful, always active, impulsive and emotional, I find summer time a long holiday to keep him safe, stimulated and happy" Summer holidays have been a time of anxiety and worry as parents have to balance work, wider family commitments and giving B the best opportunity to socialise and have a positive time. We offered family trip where Carer A and her son came along with other parents. She could relax and have a really great time as she could see he was safe and happy, and she was with friends who she trusted and relaxed with "It was brilliant, he had a ball and I did too!" "What an amazing day he had, he fell asleep on the couch for 1st time in a loooooong time, great day thanks for having us" Coupled with this we enabled through voucher scheme for Carer A to book her son into Schools Out for regular days over the holidays. "It gave me peace of mind knowing he was safe and playing with staff who could support him" Carer A then accessed therapies to support her own wellbeing "I had some massage, it was brilliant, I would never usually do that, there is always something more important that me, it did remind me about myself and I just loved it"
Carers will feel increased wellbeing and a decrease in stress levels.
We believe this again was supported through the three strand approach as we acknowledged different elements gave different carers increased wellbeing. Carers accessed family time options and therapies throughout the year and feedback on all aspects of the 3 strands. Carers had time together with their families taking time out of their everyday caring routines, and because of flexibility of choice, enabled real choice that suited all members of the family. "I know it sounds silly but just me and my husband being together with both of the children at the same time is rare - we all got so much out of the time" There was a regular update of services offered and carers reflected they were accessing support and decreasing their stress levels significantly where they would not have accessed this support if the offering had not been there. When asked if they would access this support again, they said yes a great outcome when it is sometimes a challenge to access support.
Carer B supports her son who has a genetic disorder. She lives with her husband and 2 other children and works also. The impact of his disability is that he has severe behavioural issues "It limits where you go, what you do, we cant go to clubs soft play, even some supermarkets, its a constant pressure" Carer B accessed therapies and she chose to go Horse-riding, she used to have a horse when she was younger and hadn't done this for 16 years. This gave her time out and enabled her to try something completely different. "I saw the world from a different perspective, it was nice to get out, to get outside in fresh air and amazing views, it was amazing although I was more than a bit stiff afterwards" She also accessed the Spa Day where a group of 10 ladies went for a day to a local hotel for a dip and dine lunch and a therapy "It was such a laugh to be there with the girls, it felt like another world" "I would have never spend money on myself on something like this just for me. When someone tells you though that this is for you to look after yourself it is easier for me to accept. I would always put the kids and the house first, not me. This put me first"
The combination of group and individual support will reduce the feeling of isolation common to families of children with disabilities, increase inclusion and natural extended peer support will continue to develop.
We have observed regular attendance at the group and families getting to know each other well and being welcoming to everyone. Carers get to know each other well and the group becomes like one big family. The online element of the group helps to keep people connected. Carers can share experiences as well as learn from others experiences and a network of carers always has information one or more people may not have known otherwise. By providing opportunities for carers to go off together for a break we also enable opportunities for friendships and find support even if its just someone to listen.
Carer C supports two children with Cerebral Palsy, her younger son is also deaf and needs 24 care for all daily living needs. Carer C has accessed 3 strands of support and an integral part is the Parent Carers Support Group and the online closed group. "I love it, at the beginning for me it was always about support and now it is support but its friendship and laughter. We helped each other when the kids where younger and we continue to do so and its just the girls, there is someone there who understands and we can get things off out chest" Carer C reported "It can be quite lonely as we don't meet people we might meet if the children were going to rugby training and stuff" Carer C reflected having the group there was now part of her social network and how word of mouth really helped the group encourage others to come. "Its been a brilliant thing, knowing I am not alone" Carer C has accessed Spa day and her family came on trip to wildlife park, but took their own transport due to equipment needed for the children.