South West Glasgow Carers Centre on behalf of Glasgow Carers Partnership
A story by Volunteer Glasgow, South West Glasgow Carers Centre
We provided grants directly to carers who live within or care for someone within the Glasgow City boundary.
What South West Glasgow Carers Centre on behalf of Glasgow Carers Partnership did
The Time to live grant in Glasgow is split evenly across the City between each of the 6 carers centres. We operate within the Glasgow Carers Partnership, with each carers centre manager ensuring that all aspects of the Time to Live Fund are met in their respective geographical area. Each manager has a specific responsibility for the promotion, allocation, booking of short breaks, invoicing, recording, monitoring, evaluation within their geographical area, and reporting back at the carers operational group meeting each quarter.
Each carer was asked to complete an application form, in which they give details of themselves, their caring situation, the break they were requesting as well as how they fell the break was going to meet their needs. The application form was designed in such a way as to assist carers to think about what outcomes they wished to achieve in line with the overall time to live fund outcomes. This enabled carers to really think about what they hope to get out of a break and structure the break to help maximise the outcomes.
Applications could be submitted anytime and where applications were received from a different area these were forwarded internally to the correct centre manager.
Each carer centre were responsible for reviewing the completed applications for their area with their local panel members. The panels were locality based, meeting on average every two weeks, to allow carers to get the right break at the right time to meet their own individual needs. As each sector of the city, had its own local panel this ensured that decisions were made more quickly and effectively.
Applications were screened before going to the panel and where applications could be funded using more appropriate alternative funding the time to live application was then converted to the other fund, with the carers permission. This ensured that those put forward to the time to live fund were those most in need. Where the application lacked information, the carer support workers contacted the carer to gather more information to ensure that the application was robust and fully compliant with as much detail on the caring situation. Carers were offered support.
The whole family has really struggled since the final diagnosis was given, in particular with individual emotions, family relationships, finances, employment issues, housing and planning for the future and what this will mean for everyone. Harry was assisted to submit an application to the time to live fund to apply for help towards the cost of a family holiday, where the family could make some positive memories and spend some precious and much needed time together before time ran out.
Due to Jean’s condition and treatment the family had very little time together as a unit. They were successful in their application, and reported that the holiday brought the family closer together and all experienced a sense of happiness which they had not felt for some time. Harry also reported that the holiday reduced everyone’s stress levels and helped move the family towards discussing the future openly. The financial support towards the holiday from the Time to Live fund made the holiday possible.
The memories which the family have created cannot replace the sad prospect of losing a wife and mother but will be cherished by all for many years to come.
Billy is a 59-year-old male who has been providing care and support to Silvia since her health deteriorated in 2015 and subsequent devastating Motor Neurone Disease diagnosis in March 2016. They have been together for 26 years, and Billy is struggled to come to terms with his partners prognosis and finds it overwhelming and physically and mentally challenging.
Billy gave up his employment to provide 24-hour care to Silvia who is wheelchair dependant, requires a hoist for transferring, has lost the use of her hands and is no longer able to communicate. Self-Directed Support is now in place to meet some of Silvia’s personal care requirements 3 times a day, as well as two 4 hour breaks, which allows Billy some time out from caring. Billy has health issues of his own including a heart condition and arthritis in the spine.
Billy reports that one of the most significant challenges has been Silvia’s reluctance to access respite away from him thus making getting a holiday or break away almost impossible due to the equipment she needs. This placed Billy under a great deal of stress as finding appropriate place with the necessary adaptations has been difficult and expensive. Billy applied for, and was successful with help towards a suitable break through the time to live fund.
Through partnership working with the specialist MND nurse, Billy and Silvia enjoyed a holiday in a specially adapted caravan and a family member agreed to support them during the break. The break did Billy the world of good, and it allowed Billy and Silvia to spend time together away from their normal routine while enjoying what may be their last holiday together, improving their health and wellbeing.
Paula made the decision to combine the urge to try something new, along with a break. After some research she applied to the Time to Live Fund to help towards the cost of a holiday on a boat which she would learn to sail. She was successful with an award towards the cost of the break, and as a result she was able to book a fully equipped boat cruiser which she learned to sail up the Caledonian Canal. Paula had never sailed before in her life, she stated that the break was fantastic the scenery was spectacular, the cruiser was first class and one of the most enjoyable experiences the 3 of them have ever had.
Both Mum and son coped brilliantly mum seemed more settled and Scott was in his element watching all the other boats up and down the canal. This helped Paula relax knowing that both were happy and content, they enjoyed long conversations everyday about what they had done and where the plan to go next (conversation isn’t always the norm back home). It allowed her to balance her care role, along with being able to try new experiences, which will help her to sustain her care role longer term. She stated ‘what an experience, can’t wait to do it again. Every carer should own a boat, would Time to Live cover this!!’
Lisa is the main carer for her partner Andrew who suffered brain damage, which has left him with significant memory loss. He is no longer able to work and has become isolated, spending long periods of time at home. He spends long periods of time in bed or sleeping on the sofa. Lisa works full time during the day and when she comes home, she provides a great deal of care and support to her partner.
Their low income has made it difficult to spend any quality time together outside of the family home. Both Lisa and Andrew feel that the loving relationship as “husband and wife” has been lost due to the demands of the caring role and the limited opportunity to do things as a couple, all of which is having a negative impact on the health and wellbeing of them both as well as placing further stain on the caring role.
Lisa was successful with a Time to Live fund application, resulting in her and Andrew being able to take up social activities which has helped reduce their social isolation. They both report having an improved quality of life since being awarded the finances that has allowed them to “do things again as a couple” and “ have a laugh”. They now try and make an effort to save enough money for to continue to enjoy social and recreational activities together
Access to the Time to Live fund has demonstrated the positive difference financial support can offer to couples that are not in a financial position to take up leisure/social activities without adding financial pressure.
Both mum and Chris rely more and more on Hannah, which had resulted in her spending less time with her friends and much more time at home. She reported feeling guilty about going out or doing anything just for herself. Hannah was supported to submit an application to the Time to Live fund, in order to take some time out for herself and remind herself of the importance of recharging her batteries.
Hannah was successful with an award and enjoyed a pamper day session with afternoon tea at a local hotel. Hannah reported that she had a fabulous day and felt very special. Hannah stated that it was all part of feeling more in control and able to take a step back to focus on her own dreams and aspirations. She now feels more able to address some of her own feelings about the pressure she was feeling, the college are now aware of her caring role and additional supports have been put in place to help mum.
Mary is the main carer for her husband Jim who has dementia and type 2 diabetes. Jim’s dementia is becoming increasingly worse and Mary was finding her caring role more difficult. He is no longer able to drive, which has had a negative knock on effect on Mary, as Jim used to drive them to the shops and to enable them to get time out from the house. Mary was in need of some time away from the usual pressures and routines. She applied and was successful with a Time to Live grant to enable them to go on a relaxing break away.
Mary reported that they had a great relaxed break away and came back with a bit more energy for the difficult times they may have to face ahead of them. They were able to enjoy this time together, in the face of Jim’s deteriorating condition. Mary reported feeling less stressed, and felt that she did not feel so isolated. She also feels more able to cope with her care role longer term.
Anita cares for her husband Derek who suffered a Stroke several years ago and developed early onset Vascular Dementia at that time. Anita has been caring for Derek for 7 years. Anita feels very isolated in her caring role as Derek has little conversation and sleeps a lot of the time. Anita attends to all the household chores including shopping and cooking. Anita also helps support Derek with his personal care and his medication.
Anita stated that some days she feels ‘burned out’ as she’s up early every day and straight into her caring role. She feels like she never gets a minute to herself. Derek also has COPD which means he has chest and breathing problems. He also has poor mobility, so when they go out Derek uses a wheelchair. Derek has some provision, which is funded through the social work department.
Anita, applied to the Time to Live fund, and was successful in help towards a Befriender service for Derek. The Befriender Service has provided Derek with time out of the house in a safe environment where he can be mentally stimulated which may help his Dementia, and has allowed Anita much needed time to herself when Derek is out as it gives her time to relax and de-stress or catch up with household chores. The social work team are in the process of assessing Derek and Anita for SDS so that this service can carry on. This will mean that Anita will benefit from longer term support.
What Volunteer Glasgow, South West Glasgow Carers Centre has learnedThe Time to Live fund has allowed us to support carers who are less likely to ask for support due to how flexible the fund is. The way that the fund is structured encourages a needs led rather than service led approach. This has enabled carers to try activities or breaks that they would ordinarily not have access to or be able to try out.
The continued welfare cuts has had a detrimental effect on carers ability to take breaks and therefore we have had to be more mindful of the financial strain taking a break could have on them. Where possible we have tried to take a holistic approach to helping carers plan and organise a break, looking at off peak deals and trying where possible to have meals included in the price of a break, where needed.
As an organisation, we have continued to learn and to gain experience of breaks that have been successful and others that have been less so. This has enabled us to build up some expertise in removing barriers that carers may face when planning a break, such as accessibility or the need for additional replacement care while away.