Delivering for Carers

Carers in Partnership: A strategy for unpaid carers in Angus 2019-22” and “Carers in Partnership: Improvement Plan” were developed in collaboration with local carers and their representative organisations. The documents reflect the principles of treating carers as Equal Partners in Care:

  • Carers are identified
  • Carers are supported and empowered to manage their caring role
  • Carers are enabled to have a life outside of car
  • Carers are fully engaged in the planning and shaping of services
  • Carers are free from disadvantage and discrimination in relation to their caring role
  • Carers are recognised and valued as equal partners in care

An improvement Plan outlines priority actions over the next three years.

Eligibility criteria were agreed in 2019/20 to ensure that those cares most in need had access to support plans developed by adult services. Around 20% of cares in Angus are likely to be supported directly by Angus HSCP.

Angus Health and Social Care Partnership provide funding to Angus Carers Centre which allows for the delivery of a comprehensive range of information, advice, development of support plans and support for carers across Angus. Angus Carers Centre are also able to signpost carers to other resources available in the community. In addition, carers who have greater levels of need access a more complex support plan through care management which will provide access to a personal budget that can be used for respite and other support. Carers requiring this level of support may also continue to access support from Angus Carers Centre.

The Carers (Scotland) Act 2016 started to have full effect from April 2018. A new carer’s support plan has been designed in conjunction with Carers. This is used by both Angus Carers and Care Management A carers support plan establishes a potential budget that can be used to support the carer to continue in their caring role. This then offers support through the self-directed support options, providing carers with greater flexibility about what types of services they choose and how they are delivered.  Through the completion of the Adult Carer Support Plan, carers are being encouraged to use their budgets in outcome-focused ways to complement other supports and services which sustain them in their caring role. This includes for example support from their wider family and friends; 1:1 support from all allocated worker from Adult Services or Angus Carers Centre; peer support groups; telecare (including community alarm) and occupational therapy. This new approach to assessment and support arrangements appears to be making a difference in patterns of use of respite services.

The number of carers known to Angus Carers continues to increase in Angus.

2016/172017/182018/192019/20
Registered Carers1,053
(31/03/17)
1,404
(31/03/18)
1,231
(30/09/18)
1,538
Young Carers93
Volunteer ‘care free’ respite (hours)2,4512,7482,462.5
New support plan established239128321
Counselling support hours160128
Short breaks grant applications97194
Respitality short breaks41
Local care support groups247

This family are supporting 2 of their 5 children with a diagnosis of Autism/ADHD. Mum’s mental health and wellbeing (medicated for depression and anxiety) is under constant pressure and at the start of lockdown Dad was admitted to hospital with suspected Covid -19. The lack of structure to the children’s days became the biggest problem area as they relied on the routine and certainty of school. This time in school was also the only real ‘respite’ that Mum got – with this restricted and without the ‘back up’ of Dad at the time, Mum was extremely anxious. Time outside and an opportunity to ‘burn off’ some energy was obviously restricted given social distancing and park closures etc and the family do not have the luxury of a large enough garden space for all children to be able to play together.

Inside activity options were also limited – the boys’ behaviours and ‘meltdowns’ often lead to property damage (toys, games consoles, furniture) and with the family under financial pressures often they could not replace these items. Mum was becoming overwhelmed by the whole experience and at the prospect of having to find weeks/months’ worth of activities to keep everyone occupied, motivated and stimulated effectively as the boys’ need for stimulation can be constant. Mum did not feel able to sustain this. An application was made to be able to provide the family with a smaller, fitness style trampoline – this suited their restricted space and provided the much needed physical activity (and so, the sensory feedback) which enabled the children to regulate emotions and behaviours more effectively.

The money also allowed the replacement of a broken games console with a ‘nearly new’ Xbox 360, Kinect sensor, 3 kinect games and an 8 game bundle, and purchase extra game controllers so that the family could play games together rather than relying on turn taking which, given the children’s diagnoses, is often not achievable. Providing these items for the children meant that they had activity options they could take part in unsupervised, both indoors and outdoors.

These items provided an opportunity for the family to have quality time together, playing the games and having fun, which to Mum during this time was more supportive than physical time away. Knowing that she had ‘go-to’ options for activities over the coming lockdown period alleviated some of the pressure and Mum was more able to take time out for herself throughout the day, therefore allowing her to feel more in control of her own mental health and wellbeing and more confident in her ability to sustain her caring role for her children.

Family 2 – This family are supporting their 2 year old son who has a diagnosis of Cerebral Palsy. They also have a 4 year old daughter in the household. Mum had to give up her job as a teacher when her son was born as his care needs can be so intense. Dad is also a teacher and so through lockdown his role changed too. At 2 years old, their son’s need for mobility aids and equipment is increasing and financially their future looks uncertain. However, at 2 years old he is also becoming much more aware of, and inquisitive of his environment and the people around him. This is especially true of his big sister who absolutely adores him and just wants to play with him. When speaking to Mum it is clear that they as a family will face, and have faced, challenging times and what was most important to Mum at this time was that her children were able to play together. Given the need for adapted and supportive equipment the family often found themselves very ‘separate’ from each other, often one parent playing with their daughter while the other sat with their son and watched. Given that during lockdown the family were shielding, there options for constructive time together became much more limited than usual.

An application was made to allow the family to purchase a specialist sand and water pit. Given their son’s very specific needs around physical support while taking part in anything, and so having to make best use of his adapted buggy and walking frame, it was sometimes too difficult for the children to fully engage in play together. The item ordered is specifically designed to work with their sons equipment, now and as he grows. It is height adjustable, ergonomically designed to accommodate his weak muscle tone/restricted movements etc, and is compatible with wheelchairs, walking frames and adapted buggies allowing them to be positioned underneath/alongside and so close enough for him to be able to reach. The sensory benefit to their son is also a huge factor as play of this nature is both stimulating and calming, as required. Socially, it has meant that both siblings can partake in the same activity and are actually playing it together. Given that he can be supported through frames etc without the need for constant parental supervision means that his parents are able to have ‘hands off’ time and so time out for themselves too. Their son’s needs often meant that one parent had a very physical, hands on supporting role, this way they are able to give him a little more independence as he grows bigger and stronger and the positive effect on their mental health and emotional wellbeing is clear – their children can now physically play together as others do, only strengthening the connections and bonds within the family.

Family 3 – Single Mum of 2 boys, oldest (14) with a very rare heart condition and youngest (7) is under autism assessment. Mum and her partner went through a difficult separation last year, close to the time her oldest son was having heart surgery. Mum and her sons have moved into a new house and boys now attending different schools – lots of upheaval and still regular trips to Glasgow and Edinburgh for heart health checks and assessments. Oldest son may have to return to hospital in the near future for an implanted defibrillator as at the moment he carries one with him at all times and has to have adult supervision almost constantly. This is very restrictive for him, and the family as a whole. Mum had taken the decision to remove her oldest son from school the week prior to the officially closing as the risk to him if he even catches a cold can be very high. During an extended self-isolation period for the family balancing the needs of both of her sons (one for high energy physical activity and sensory stimulation, the other for more limited physical activity and) left Mum with very few options for beneficial activities and time out for herself. She had received funding for hot tub through Family Fund and since moving into the new home had not been able to make use of it due to the garden being unsuitable (ground needed levelled and turfed etc) She also had a large play frame/climbing wall that could not be used at this point either. With Covid restrictions and self-isolation her options were limited but the hot tub and garden equipment would provide the solutions. Mum took her ‘time out’ (between home-schooling and juggling her own work from home) working in the garden, preparing the ground (involvement in some ‘heavy work’ was also beneficial to her youngest son and his sensory needs) and we applied to TTL for the cost of astro turf for the area required to make the garden, and so the equipment, useable. Providing the turf meant that the hot tub could be used both for much needed relaxation time for Mum, rehabilitative levels of exercise for her oldest son, youngest son could have his ‘inflatables’ and burn off some energy as well as being able to make use of his climbing frame – again fulfilling his sensory and activity needs and easing the pressure felt by Mum (and the brothers) through this difficult and worrying time.

This case study is a good example of effective partnership working and In discussion with fellow professionals we agreed that the partnership working had been a huge success with everyone playing a part in supporting a family in which was a very challenging situation Communication was the key element and demonstrated that effective partnership working can make a significant difference both to carers and those they care for.

This case study also demonstrates the highlights the nature of a caring role and its impact on those involved

Background

Mrs J was attending Kirrie Connections on occasion looking for support for her husband who had been diagnosed with dementia. Her husband was supported by them to attend regular sessions and engaged well. Mrs J was encouraged to register with Angus Carers Centre as there was a concern she was not coping particularly well with her husband’s condition. Although very resistant to engage initially, the carer was accessing informal support over time and eventually agreed to register and completed an ACSP and encouraged and supported to attend the weekly carers support group, specifically set up to support those caring for someone with dementia.

The group gives carers the opportunity to access information during weekly sessions that may help them to navigate the various avenues of support but also to encourage the peer support element and give them a dedicated space where they can offload and learn from each other. They are informed by regular sessions from Alzheimer Scotland and have regular input from the Dementia Liaison Team, Telecare, Social Work and others which helps to give them practical advice and have also been able to access ongoing emotional support with various wellbeing sessions also delivered by the Haven, another partner agency.

Impact of increasing caring role

Mrs J was still struggling with her husband’s deteriorating behaviour, she was becoming more nervous, her physical appearance was deteriorating too and she just looked exhausted. There was an incident of particular concern when she described a physical altercation. I discussed with her the Adult Protection protocols and she understood my concerns for her health and welfare. It was reported to Social Work with her consent and they agreed this warranted further support for the family.

Working together

The care manager then contacted me and we shared our concerns, as an ACSP had already been completed I agreed to update it to reflect the change in circumstances and had permission from Mrs J to share this.

We also offered to trial a Day Care for her husband from a fund held by Angus Carers Centre. This this would give the carer some respite and although the carer agreed she needed this she was sure her cared for would resist. This was not the case and her husband, with initial support from Kirrie Connections who accompanied him to his first session, was very happy and before his next session asked if he needed to pack a case and if he would be staying overnight.

This short term respite solution allowed for the care manager to complete their assessment and by the end of the trial period they had established 3 days a week Day Care.

The care manager, CDW and KC then arranged a joint meeting with the family as there were issues of POA and Guardianship which were of concern. We also wanted an opportunity to discuss the situation with the wider family who could support Mrs J and ensure the family were fully aware of the challenges. The meeting was well received by the family and agreement was reached that Mrs J would make the decisions about her husband’s care and the family would support this.

Over the next few months Day Care was increased to 4 days a week and carer was attending the ACC support group regularly and there was a marked improvement in her own health and well-being.

Where are we now?

When Day Care was closed due to the Covid -19 outbreak Mrs J was struggling. ACC supplied her with a digital tablet so she could access our regular Zoom Meetings. Support by telephone also continued when she need it but without regular respite her caring role had again become difficult for her. Although very concerned about her husband going into respite because of the pandemic we discussed the importance of safety and as she reported having had very little sleep and being emotionally and physically exhausted she agreed to a call to inform Social Work.

Her husband was placed in respite however as his illness has progressed Mrs J has made the decision this would be a permanent move.

Mrs J continues to engage with the weekly Zoom sessions and there has been a marked improvement in her health. We will continue to engage with Mrs J during her transition phase.

New Carer care and support plans – making a difference

Andrew has a dual caring role for his wife and son.  He recently retired and the big thing on his retirement bucket list was to build his own guitar and learn to play it. His son has refused an assessment, so the family are receiving no support for his care and as a result are using most of their personal finances to pay for this.

Andrew cannot leave his home/ immediate area very often because of his caring responsibilities and has little money or opportunity to do the things he wanted to do with his retirement.  He had identified that using his budget to build a guitar and then get guitar lessons, would be the ideal way to have time to himself to relax.  He also feels that this will restore some of the confidence and focus on personal goals that he has lost since his caring role increased.

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