PRT South West Glasgow Carers Centre
A story by PRT South West Glasgow Carers Centre
We provided grants directly to carers who live in Glasgow.
The grant made available a flexible Time to Live fund that placed carers at the centre of the decision making process, deciding on what type of short break best suited their unique set of circumstances.
It enabled carers to have a break from their care role, maximise choices in life, improve quality of life for the carer and the cared for, improved carers health and wellbeing, facilitated carers feeling better supported and more able to sustain their care role.
The fund was targeted at those carers most in need of a break.
What PRT South West Glasgow Carers Centre did
The fund was split equally between the 6 carers centres in Glasgow, each having the responsibility to process the applications for carers living within their geographical area.
Carers were asked to asked to complete a short application form, detailing the reason for the break, the outcomes the carer hopes to achieve as a result of the break, details of their caring situation, what other supports are available to them, and what type of break they were applying for.
A full guidance note was made available to carers in how to complete the application.
Full help and support was made available to carers if they felt they required assistance to complete the application forms. This help was available from a wide variety of sources such as the carers centres, social work carers teams and other partner agencies and services.
Applications could be submitted at any time throughout the year.
On receipt of the applications, a local panel for each area would meet to review them, usually on a two weekly basis. Any urgent cases were reviewed more quickly.
As part of the review and screening process, the panel would identify if any other fund would be more appropriate to support the carers needs. If another fund was identified, then the carer was called to ask if they would mind if we ‘converted’ their application to something more appropriate, with the assurance that if they were unsuccessful with the other fund that the time to live application could be resubmitted.
The panel then reviewed all applications based on priority of need and available funds. The maximum available was usually around £300 to £400, although up to £750 could be awarded in very exceptional circumstances.
The fund was advertised in a variety of ways. Through the Glasgow Carers Partnership we have an extensive email distribution list, which was used to disseminate information to social work, health and other voluntary sector colleagues.
We also distributed the time to live leaflet and application packs to a wide variety of organisations to promote the fund.
Information on the time to live fund has also been incorporated into our carers training sessions to ensure wider advertising coverage of the fund.
Developments, this year saw an increase in the number of carers applying to the Fund. There could be a number of reasons for this; an increase in publicity about the fund, increased awareness of short break opportunities, the impact of welfare reform and the reduction in other available sources of respite funding.
Many more carers took advantage of small amounts of short sharp funding to allow them a meal out or a day away. This has resulted in more carers than anticipated benefiting from the fund.
Mary is the sole carer for her 76 year old husband who was diagnosed with Alzheimer’s 4 years ago. He also suffers from COPD 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 Jim requires. Mary is clearly devoted to her husband however she is finding it very challenging to cope with the constant confusion and reassurance Jim requires. His sleep pattern is also affected so he frequently wakes during the night which clearly disrupts and disturbs Mary.
Whilst is Jim is able to nap throughout the day Mary 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. Mary 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 Jim’s condition deteriorates. Having previously been a very active lady 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 Mary 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.
Time to live fund
The carer expressed that she would love the opportunity to go with a group of friends on a bus tour to Chester and Liverpool. Her friends from her exercise group were aware of her situation and had encouraged her to go with them to give her a break from her caring role and had coordinated with each other so that they would all be able to attend as they had missed her company at their group.
Mary received £250 from the time to live fund which enabled her to go with her friends on an organised coach tour to Liverpool and Chester. We were able to arrange with Social Work Services for Jim to go into Respite for week so she was able to go away knowing that he would be taken care of.
Mary had a ball and stated that she has not laughed so much for years. She had a fantastic time away in a beautiful hotel. With all her meals and tours included in the costs. She expressed that she felt totally “chilled out” and was able to relax and unwind and more importantly get a sleep without being disturbed she expressed that 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.
The carer is a 60 year old woman who cares for her husband who had a stroke 17 years ago which left him with left side paralysis and he is now a wheelchair user. He also has insulin dependent diabetes, angina, respiratory problems and a permanent urinary catheter. As a result of his disabilities, the carer has to assist him with all his personal care needs, organise medication, take him to appointments etc as well as attending to normal household chores. She is often wakened during the night as his bag bursts and she has to then change his pyjamas and also the bedding so her sleep is very disturbed. He cannot be left on his own for long so she has become quite isolated and lonely and has been suffering from depression and anxiety.
The couple have two children one of whom lives in Perth and the other in England so they are unable to offer much practical assistance to the carer. She said that until recently, she was getting at least 6 weeks respite a year which allowed her to visit her family, and her husband also had a befriender once a week who took him out. However her respite provision has been cut from 6 weeks to 2 and the day care provider has started charging for the befriending service so they have had to cancel the service as they cannot afford it.
Since this has happened, her mental health has deteriorated and she was struggling to continue with her caring role. When we met her she was obviously very anxious and stressed and we offered to refer her to counselling and massage which she gladly accepted and also mentioned the Time to Live grant.
Time to Live Fund
The carer said that she would appreciate the opportunity to visit family in England who she had not seen for quite a while. She explained that there is a care home near where they stay which could accommodate her husband but it cost £450. We completed the form and she was awarded £250 towards the cost of her husband’s respite.
The grant from the Time to Live fund enabled the carer to visit her family in England and her husband went to a care home near where they stayed which meant that they were also able to visit him.
She said that she had a proper rest for a week, that she was able to get a full night’s sleep without getting up to attend to her husband. She also enjoyed shopping and socialising with her family without having to worry about rushing back to look after him.
When asked how she enjoyed her break, she said she felt more “chilled out” and “rested”. She said it had improved her mental health as she felt less isolated and more supported. She also said that it would be a big help if she was able to access the fund once a year as it would help her cope with her caring role. It also improved her husband’s mental health which has had a positive impact on their relationship.
Jeanette has maintained her caring role for 10 years without much support. Due to her own health difficulties she realized that she would need some short term support, even although this was against her nature to ask for it. Jeanette applied to the Time to Live fund shortly after she underwent hip replacement surgery, the surgery had taken its toll and her period of recovery seemed to take longer as a result of her continued caring role and lack of focus on taking time for herself.
Jeanette admitted that she "needed time to rest - somewhere by the sea! A break will take us away from the hussle and bussel and give me quality time to spend with my family" A one week break was organised at Craig Tara Caravan Park for Jeanette plus the children, and as her daughter was well, she was able to join them. Jeanette reported that the break made life easier with all the holiday amenities on hand to keep the children happy and entertained. Jeanette commented that it "made her feel fresh and not under any pressure, the holiday gave me time to heal more after my operation - my health is in a better place"
In the longer term, Jeanette feels more focused on her caring role and her health is back on track. She now knows that support is available when she needs it, and feels much more confident about asking for support, as the support was tailor made for her own needs.
Case study 2
Male carer aged 29 years looking after 66yr old father suffering from COPD, arthritis and a chronic bowel disorder. His caring role intensified mid 2013 when his 57 year old mother developed aggressive breast cancer, which required equally aggressive treatment. Both parents were now housebound. Carer had previously been in the navy, and on leaving had dealt with some alcohol misuse issues.
On assessment Carer reported feeling like his life was on hold. On leaving the navy he had planned on working to put himself through driving lessons, in order to secure future driving jobs. He was also feeling extremely isolated – having lost touch with friends at he other end of the city. His mother was aware of how isolated he was becoming, and feeling guilty about this, which was causing the Carer increased stress and anxiety.
A TTL grant of £190 was awarded to fund a course of 10 driving lessons. This enabled the Carer time out from his caring role, increase his confidence that he was improving his future job prospects and working towards a life outside of caring, and his life was not completely on hold. It reduced his social isolation, enabling him to resume contact and maintain relationships with friends across and outside the city due to being able to travel easier, in a shorter space of time. It also helped improve his caring relationship – Mum and Dad felt less guilty at the impact caring was having on him when they could see him taking steps to improve his own life and prospects.
Although Louise was in dire need of a break, she felt that she could not go on a family holiday without her daughter. The difficulty was that going on a family holiday was not going to give Louise a break from caring, which is what she so desperately needed. She knew that she "very much needed a holiday to recharge and have a break from everyday caring and household tasks".
When completing the Time to Live application, care was taken to try to look at the best possible support to achieve the best possible break for Louise, while giving her a ‘family holiday feeling’. Louise applied for the cost of a support worker to accompany the family on holiday, to provide all the support that her daughter needed. They were successful with the application, and the support worker accompanied Louise, her husband and Allison on holiday to Centre Parcs for a short break. This allowed Louise and her husband some much needed time together, while Allison was away with the support worker taking part in activities.
By accessing outside support and raising awareness of carer centre services, Louise is more aware of other opportunities for future support in her caring role. She also has health issues and when help is required she will be more confident in sourcing information and services. Louise reported that as family they had not has a break for a long time and the chance to get away with support made such a difference to them all. Without the support, they could not have managed. The break "allowed me to spend quality time with my husband which I don't get the chance to do at home, I feel more refreshed and more equipped to cope with my caring role, knowing that I can access support in the future"
Case study 2
Carer – 23 year old female, looking after her 76 year old Grandmother. Grandmother is frail/elderly, suffering from arthritis, rheumatism, Crohns disease and cataracts.
Grandmother is dependent on granddaughters care and support in addition to Cordia services 4 x per day, and aids such as stairlift, wheelchair and zimmer. Grandaughter had taken over the caring role from her mum, who could not cope with her caring role, and it eventually broke down.. Grandaugher had a holiday planned at this time, but had to cancel it to take over the caring role.
Outwith Cordia support, granddaughter was responsible for shopping, cooking, housework, laundry, medicating, toileting, managing money and appointments, escorting, motivating and encouraging.
On assessment, Carer reported she was coping with her role, but had suffered from anxiety, and was missing aspects of her life which she could no longer keep up e.g. socialising with friends, attending the gym. She had begun to feel extremely isolated, and her relationship with her boyfriend was suffering.
A £240 Time to Live grant was awarded, to enable the granddaughter to attend a music festival in Manchester with her boyfriend.
This break enabled the Carer time out from her caring role, reducing her isolation – helping her to feel “included” again by mixing with her peers, and lessening the stress and anxiety she was feeling. She was able to devote quality time on her main relationship outside of caring – that with her boyfriend.
The carer also reported that she felt the break would be the first step in helping give her grandmother some independence back, evidencing that she could cope without her granddaughter for short periods of time.
M is a 72 year old lady who has been providing care and support for 18 years to her 71 year old husband T. T had a stroke in his late 50’s and is now wheelchair bound requiring assistance with all aspects of his physical, practical and personal care needs. Their home has been adapted to meet T’s physical needs and assist M with personal care tasks and toileting her husband. A full home care package is in place 7 days per week 4 visits per day, 2 workers each visit. Over the past 2 years T’s health has deteriorated, he suffered a further stroke which has affected his ability to swallow properly requiring all food to be liquidised reducing the possibility of choking and his speech is now severely impaired.
M has always managed to cope with her husband’s care needs in addition to those provided by Home Care while trying to maintain a normal life such as socialising with friends, enjoying family and going on holiday. However M has developed health issues including, a prolapse and breast cancer resulting in a mastectomy.
The most significant challenge has been T’s reluctance to access respite away from his wife and insists they continue to enjoy holidays together and wanted to visit Blackpool a place they regularly enjoyed holidays together before his illness. This placed M under a great deal of stress as finding appropriate care to assist her while on short breaks has been difficult and expensive.
The increased care needs of T and reluctance to accept respite exaggerated by a period of ill health experienced by M created additional mental health issues for both carer and cared for a the risk of the caring situation breaking down was significant with no opportunity for a break away from the routine.
The Time to Live Fund provided assistance towards the cost of a holiday where personal care was provided by a professional care worker in an fully disabled adapted bedroom/bathroom; this allowed M and T to spend time together away from the normal routine, meeting the needs of both, provided opportunities for them to relax in a hotel environment, have their meals prepared, meet new friends and M was able to leave her husband in safe hands and enjoy shopping and walks along the promenade.
Both M and T enjoyed the break – M got time away for herself, without feeling guilty while T enjoyed a holiday of his choice and they were together as a couple without the stresses of caring at home!
Case study 2
A is a 30 year old male who has had to give up employment to provide care and support to his 24 year old partner K. A’s mother recently died and he felt he had not had the opportunity to grieve properly due to the demands of his caring role.
K has fibromyalgia, arthritis, depression and anxiety. Her mental health makes her feel useless and trapped and her growing dependency on A caused him to feel overwhelmed by the situation and he questioned his ability to continue to provide care. Having had to give up full time employment added additional financial pressures to the relationship, access to the Time to Live Fund gave A and K something to look forward to.
A had a son from a previous relationship and they were drifting apart due to the increased care needs of K, A felt his son was being neglected of his time,
An aunt offered a family holiday home not too far away but providing a place where childhood memories could be rekindled and support an improved mental health. This provided a safe environment for K but also A too had family memories of places close by. After a couple of days K was able to go outdoors after feeling trapped indoors for several months before the break and was keen to get to know A’s son and spend quality time as a family. A was able to revisit places he had been to as a child with his son, this made him feel he was a real dad. A said, “this made K so happy!”
The fund provided travel and met holiday costs and treats as well as a place to relax without the noise of neighbour's or other outside noises which affect K’s mental health. K visited places she went to as a child and a local Arts Festival which really inspired K to get back in to her art work which has helped her relax and feel more useful again since they returned, something she had been struggling with for a while. Both A and K enjoyed the break – A got time with his son, without feeling guilty while K enjoyed a holiday in a familiar place getting to know A’s son and participating in activities she previously enjoyed.
A is currently looking for part time work as K has resumed hobbies she previously enjoyed and there is a marked improvement in her mental health.
What PRT South West Glasgow Carers Centre has learnedCarers Centres in Glasgow had an existing CORE short break fund that could be used to offer replacement care in response to a crisis, or to allow carers to attend appointments and to access centre activities such as training and events. Due to the nature of that fund, there were conditions on what providers could be used to provide the short breaks.
The Time to Live Fund has enabled us to be far more creative than simply giving carers time off from caring. We are better able to respond to the diverse needs of carers and addresses the issue of 'one size does not fit all' .
It offers carers the chance to do something that they would like to do for themselves or in some cases to enjoy activities with the person they care for. The involvement of carers alongside informed staff at all points of the process is fundamentally important to the delivery of an appropriate and a responsive high quality short break service. This ensures funds are distributed fairly, offering a variety of breaks to a range of carers and care groups.
The Time to Live Fund has facilitated open and honest discussions with carers about what a break really means for them. Using the time to live fund outcomes, we have been able to look at how the carer could achieve these outcomes using the fund. For many this has meant using the time to live as a starting point and then applying for other funds to ensure a real break from caring for the carer.
One of our main challenges has been trying to meet the increased demand for this fund year on year. Another challenge continues to be the collection of receipts for funds that are allocated direct to the carer.
The Time to Live Fund acts as a catalyst to carers coming forward for support, many of whom would not have come forward previously. Many carers, having accessed the time to live fund, come forward for other community supports such as support groups and carers training. Help in accessing benefits, information, advice and support establishes a positive relationship between centre staff and the carer. The carer will identify the centre as a 'one stop shop' offering a pathway of support along the carer journey. This reduces the reliance on statutory services longer term.