Summary
The project offered creative & stimulating activities to children with disabilities/complex needs and carers. The programme of events helped children to develop communication, motor-skills & imagination through sensory play.Carers had a break from their role and made new friends with their peers
What Play-Sense Play Group, School Holiday and Parent Carer Project did
Play-Sense play group supports families across a wide area of the East End of Glasgow. The group celebrates inclusion and diversity and is represented by 12+ ethnic backgrounds.
Our weekly Play-Sense sessions include access to our play room and sensory room. In addition, we ran two full-scale weekend family events and further outreach visits to a local sensory/soft play area who delivered dedicated sessions for Play-Sense families. This allowed families to familiarise themselves with other services in the community. This is where we held our Christmas party for the children which was a great success.
Our service provides an ideal route for families to be referred into a support system early in their child’s life, allowing them to get a break from their full caring role and to access a range of additional support they would otherwise not be aware of.
At the point of engaging, parents are often particularly vulnerable. They may be awaiting a formal diagnosis for their child or have just received one. Most are referred via the Child Development Centre, local family-focused third sector organisations and via word-of-mouth. Many feel isolated, distressed, overwhelmed and angry and report that they welcome the opportunity to express their emotions and concerns to staff and peers who understand what they are going through. We developed close working relationships with referral agencies and provided support materials and a quick referral process to assist them promote the service. We also have a self-referral system on our website
We worked around the parents' schedules - events would normally take place while the children were at school and the carers were free to get some "me time". Training sessions were recorded and posted via Vimeo, which allowed parents to participate at a time that suited them - this was particularly beneficial to working parents.
the pamper days we provided gave carers a much needed boost to their confidence and wellbeing especially after the restrictions of Covid. The need for personal interaction with peers after a year of WhatsApp chats and Zoom meetings was evident and carers felt less isolated.
What Glasgow East End Community Carers has learned
The two main learnings we learned delivering the project were strict budgetary control and prioritising workloads
One of our ongoing challenges has been the increased cost of things as we have encountered the cost of living crisis. The cost of transportation has rocketed as fuel prises oared -even the smallest item like providing a juice for the children has increased. This has meant more management time had to be spent on budgetary control. The project had an overspend which we were able to cover via accessing other funds and receiving additional support from pour Homecare service.
The success of the service and the reputation that we have built up over the years has also brought its own issues - we found it difficult to make our limited resources stretch to meet the demand that we encountered after Covid. There was and still is a backlog of families with children awaiting a formal diagnosis - as the waiting list was reduced we had an avalanche of referrals - which in turn created a waiting list further down the line to access our service. This meant we had to carry out initial evaluations but delay certain families as more urgent need of support had to be dealt with first - families who were in or close to crisis point.
How Glasgow East End Community Carers has benefitted from the funding
Better Breaks funding has allowed us to continue to intervene and support families at an early stage and provide preventative support before the families get to a point of crisis which we have often seen.
Our professional approach has been recognised by our referral partners and we are seen as the first port of call for many in our area who require support when children have been diagnosed as being on the spectrum. The funding has aided us in providing training for these families to help sustain them in their caring roles
As an organisation we relocated to larger premises in January which will give us more scope not only to provide support for families in our local community in the future but also develop new services
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Project Outcomes
Outcome
We will have successfully supported 76 children with disabilities living in the North East sector of Glasgow. This would be via their attendance at our weekly Play-Sense play group, summer outdoor programme, quiet autism sessions and family outings. We through a grant got a child a pc.
Results
The outcome has been 100% achieved. 106 children received support during the project. Some of the activities were changed to meet the individual' and cared-for children to try and obtain the best possiblo outcomes. Children enjoyed the various activities - from seeing the animals at petting zoo to the more energetic fun at the Soft-play centres
Case study
Sheryl is parent carer to her 10 year-old autistic son, Alan and was referred to GEECC via CAMHS for ongoing carer’s support.
Alan has lots of sensory issues around noise and lights. He is also highly anxious about day-to-day events and routines and goes into fright or flight mode (there is no fight mode).
He has huge empathy with others, often to the detriment of his own wellbeing. For example, he has been horrified by the images on the news of the war in Ukraine and cannot understand how adults could purposely hurt children with bombs. He had been worrying and ruminating about it and felt he must do something about it. He asked his mum to help him to raise funds by selling hand-painted blue and yellow hearts and raised almost £1000 for Unicef. He is a kind-hearted, sensitive boy. His autism makes him single-minded to achieve what he sets out to do when it involves helping others.
At school he has a couple of friends. However, he isn’t moving along at the same pace emotionally and because he doesn’t like sports in school, is often excluded and seeks a teacher to be with.
Alan doesn’t cope with clubs. Sheryl has tried lots of groups such as Taekwondo, gymnastics, dancing, acting academy, art and music classes and football but he feels too overwhelmed. His sensory issues are a huge problem when in group settings and he often feels excluded.
He struggles to make new friends and doesn’t know how to talk to anyone, socially.
We suggested we apply to the Family Fund for a PC to give Alan the means to engage in autism -friendly friendships groups, digital art, and gaming, removing the need for the stressful social demands of in-person activities. The application was successful, and Alan now occupies himself meaningfully with the activities he loves. He has made new friends online as a result. It has given him the opportunity to pursue creative gaming projects and digital art. These are things that make Andrew happy and give him much respite and comfort as he is passionate about art and gaming.
Having a PC has also helped with Andrew’s homework and school projects, which he couldn’t face, as he was unable write the necessary information; it caused too much stress and frustration. This has improved his experience of Education.
Outcome
We will have successfully supported 199 carers in the North East sector of Glasgow. They will have enjoyed various activities, family events, new friendships, hospitality, including time away from their child
Results
This has been fully achieved although the split in the carers was different - 76 carers of Pre-school children and 37 carers of school-age children were supported during the project. The carers experienced trips along the Forth & Clyde Canal and pamper sessions to give them a boost. The WhatsApp groups have helped create friendships with people who can empathise as they are going along the same carer pathway and can give each other support and advice. The Whatsapp groups have been great for parents to share what worked well for them with their children and what pitfalls to avoid, The Social contact has been seen as being really important to the carers after the recent restrictions
Case study
Marie is the sole carer for her 6 year old son, Ryan who was diagnosed with ASD. He has also suffers from Asthma which has become much worse since this diagnosis as he gets easily confused and forgets how to take his inhalers., this has resulted in subsequent chest infections. Obviously this contributes to the level of daily care and support he requires. Marie is clearly devoted to her child however she is finding it very challenging, and is often left exhausted with very little energy to cope with the day to day practicalities of being a full time carer as well as running her own home. Marie states she has just been trying to get on with things since the diagnosis but is slowly coming to accept that she will need more support especially as Ryan grows. Having previously been very active, regularly taking part in various community groups and exercise classes she is feeling extremely isolated now as she has had to give these up as a direct result of her caring role. Thankfully Marie has recognised the detrimental effect this is having on her own health and wellbeing and is willing to accept how it is contributing to her stress levels and apprehension about the future and helped her accept the importance of a break from her caring role.
The carer expressed that she would love the opportunity to go attend the training classes and meet other parents while Ryan was at school. We also carried out a benefit check and were able to increase the income she received. We organised a Spa day for the group where they enjoyed a treatment of their choice and some lunch. This was a great success and has led to more social engagements being arranged within the group.
Marie said that she had a ball and stated that she has not laughed so much for years. She had a fantastic time away in a beautiful spa hotel. She expressed that she felt totally “chilled out” and was able to relax and unwind and more importantly she felt completed rested and felt the opportunity for a break away had made a world of difference to her state of mind and general mood and that she felt much more able and willing to continue with her caring role
Outcome
110 parents/carers of pre-school children with disabilities will report being better connected to support within their community,while benefiting from knowledge and experience of peers and staff members resulting in increased understanding of their child’s condition, developing coping strategies
Results
This has been fully achieved - we have provided a number of different training programmes including some specifically for the Mandarin speaking community. Our WhatsApp groups have become a fount of knowledge whereby parents share their own experiences of what worked for them and what did not when taking their children out into the community, highlighting any pitfalls that should be avoided
Case study
Anna is a 44 year old woman who has been caring for her son and her husband for the past 15 years. Her husband is diabetic, has mental health problems and a visual impairment. Her son has a range of physical health conditions, including asthma, nocturnal enuresis and encopresis, and recently diagnoses with Autistic Spectrum Disorder.
Annabalso has health conditions that impact on her life (asthma, diabetes, high blood pressure, sleep apnea and depression).
Previously, her son used the befriending service that we offered, but the family had not engaged with the Carers’ Centre for some time.
However following the ASD diagnosis, Anna contacted us with regard to a DLA application for her son. The case was allocated to Adrienne, who visited Anna at home. This was the preferred option as Anna was unable to leave the house due to her care commitments and her own health issues.
Over the course of two home visits, the DLA application was drafted, agreed and finalised.
During the home visits, Anna expressed that she and her family were affected by social isolation, resulting from their physical and mental health difficulties.
DLA application was successful, with middle-rate care and lower-rate mobility accepted.
Anna accepted an invitation to attend a carers event at the Carers’ Centre, and benefited from a massage therapy.
She expressed her wish to continue attending the carers’ group, and to take part in up-coming training events which would benefit all her family in being able to understand her son’s condition.
Prior to her self-referral, Anna and her family were experiencing social and financial exclusion due to the impact of health conditions. A more secure financial situation was achieved, and the contact made during this process has given Anna some impetus to socialise and get out of the house.
Outcome
110 parent carers and 76 children with disabilities will feel more fulfilled and have experienced a reduction in stress symptoms and increase in emotional and mental wellbeing.
Results
This has been fully achieved - the activities and breaks we provided have shown a positive impact on those who used the services provided and they have reported that their mood has been lifted and they have received a boost in confidence that has also led to happier family life in a home that has seen a reduction in stress that has allowed the parents to cope better with their caring role.
Case study
Aine, a mother of two has been a carer for twelve years. Since giving up work she has been the full time carer for her two sons aged six and twelve who have both been diagnosed with Autism Spectrum Disorder and both also have a range of additional and varied complex needs. As a result the level of care each requires is substantial and extremely varied. The boys themselves struggle to cope with each other’s differing needs and behaviours, placing even more stress on their mum to accommodate both.
She feels constrained by her difficult circumstances and is severely frustrated by the lack of support and services available. She has had to fight with a range of professionals to obtain the correct diagnosis for her oldest child, ultimately paying for it privately, and this has led to a fairly cynical and sceptical approach towards support services. Aine therefore suffers with anxiety, depression and extreme levels of stress and rarely gets any free time for herself.
Her husband Peter has been forced to work long hours as the sole breadwinner to be able to support the family. This has had a knock-on effect on their family dynamic and coupled with the pressures of being a full time carer, has a detrimental impact upon the carer’s overall health and well being.
In the self-assessment form, Aine indicated that she was severely stressed due to the lack of information, services and support available. Her personal health has suffered as a direct result of her caring role and she was exhausted by the continued fight to access support for her sons, often wishing she could ‘run-away’, particularly due to financial hardships.
Our Carers Support Worker visited the family at home and confirmed the issues on the self-referral form. It was evident that Aine was committed to her role and her children, however it was agreed that she would benefit from a number of interventions:
• Training to assist her in her caring role with training programmes including Autism Awareness, Challenging Behaviour, Personal Effectiveness, Self Advocacy, and GIRFEC.
• Referrals were made for complementary therapies such as Reiki and massage.
• A referral was made to the Community Carers’ Nurse for a health review.
• The family were signposted to both Sense Scotland Family Support Project and GeezaBreak for additional support offering the opportunity for respite, befriending and sibling activities.
• A Time to Live application was also made to enable the parents access to a weekend break and spend time together to work on their relationship and reconnect as a couple.
• The carer was given details of GEECC Parent Support Groups.
• The carer continued to have full access to one-to-one emotional support, if required.
Aine attended in-house massage sessions and took part in an organised pamper day These helped to relax her while alleviating anxiety and stress. Subsequently, she felt better equipped to face the daily stresses of her circumstances and care for her sons.
She attends a monthly Parent Support Group, specific to parents of autistic children. This allows her to interact with others, reducing isolation and providing peer support. During these group sessions, social work professionals have led seminars delivering relevant information on Self-Directed support, which is appropriate to the carer’s current situation.
Aine also attends Personal Effectiveness Training. This is helping her to contend with personal difficulties by building her confidence, improving her well-being and reducing isolation.
Aine now feels better informed about her childrens’ conditions and is therefore more confident in her caring role. Her attendance at the support group allows her to discuss worries with staff and other carers, reducing isolation and stress. Her active participation in the Personal Effectiveness Training is giving her something different to talk about – she says she is ‘loving’ this and is really enjoying the course.
With a grant received from the Time to Live Fund, both she and her husband are planning a weekend together. This is something they both look forward to as their last break away from home was over four years ago - an enjoyable time which they still discuss. They anticipate this future break will be time to unwind and gives them the hope of respite from their current situation.