Carers are the best people to tell their story and demonstrating the benefits of being involved, accessing support services that meet their needs and promoting to other carers' the plus points of knowing what support and advice is available. Here, they share their stories.
Maureen is a returning carer. She first became known to the Fife Carers Centre in 2015. After a brief period where no support was required, she contacted the centre again in August 2017 seeking advice and support. An introductory visit to meet Maureen and her husband at their home was arranged. Maureen said she was feeling very isolated and frustrated by her husband’s apathy as a result of his diagnosis of dementia. This manifested itself through outbursts of anger and tears.
The Fife Carer Centre Support Worker suggested that Maureen’s husband might like to join the newly formed Men’s Dementia Toolshed at the Ecology Centre at Kinghorn Loch. Maureen was very reluctant at the thought of her vulnerable husband travelling there unaccompanied every week. To help manage this anxiety the support worker agreed to take Maureen’s husband to visit the Toolshed and spend some time there. He loved it – he was desperate to become part of a new project. The support worker helped Maureen to organise a weekly taxi transfer to the Toolshed. This time gave Maureen a regular break from her caring role, important time her herself. And it was only possible as a result of the extra mile the support worker from the Fife Carers Centre was able to take.
Beth is 41 and works as a personal assistant. Both of her parents have life-limiting conditions and she has spent 18 months caring for them on her own. Colleagues at the hospital had concerns about Beth’s emotional and financial wellbeing as a result of her caring role. Beth was referred to Sandra, the Hospital Carer Support Worker at Victoria Hospital when her mum was due to be discharged from hospital with a terminal diagnosis.
Sandra worked closely with Beth by supporting her to complete benefit applications and arrange a Power of Attorney to provide some financial security. She was referred to support sessions to enable her to better understand her dad’s dementia. And importantly, Beth was assisted to plan the respite care she needed going forward in looking after two frail parents.
Fife Carers Centre received a call from Sarah looking for advice on how to support her parents with her dad’s diagnosis of dementia. The Carers Centre arranged for an introductory visit to meet the family and have a chat with Sarah’s mum about what sort of support she could benefit from as a carer.
The support for Sarah’s mum included informal counselling and referral to Women’s Aid following the disclosure of abusive behaviour towards her. In line with protection for vulnerable adults, a referral was also made to social workers.
Fife Carers Centre provided additional advice and support to the whole family while dad was admitted to hospital under the Mental Health (Scotland) Act 2015. The Carers Centre worker provided advice on how ‘the system’ worked and gave emotional support to Sarah’s mum. Following medical assessments, the multi-disciplinary team decided that it was not appropriate for Sarah’s dad to return home and he was put on the list of sheltered housing.
George lives at home with his wife Ena, who has her own ongoing medical issues. George and Ena receive support with personal care and meals. Between them, they have 11 children but most of the care falls to George’s step-daughter Margaret who helps them with domestic chores and shopping so that George and Ena can remain in their own home.
Margaret is becoming increasingly stressed in this caring role and feels George would be best placed in alternative care. Ena also often gets irritated by George.
George was admitted to hospital with chronic pain and inability to cope at home. This was his fifth admission in eight months due to multiple medical and social issues. George has clearly expressed his wish to return home from hospital but his conditions and behaviour mean this is complex and could lead to a deterioration of his abilities leading to frequent hospital re-admissions and further stress for the family.
Before being discharged home the Patient Flow Co-ordinators at Victoria Hospital took steps to discuss George’s progress with him, and the medical staff on the ward as well as with other family members who had raised concerns about “what would happen with discharge this time?”
The Patient Flow Co-ordinator felt that George had so many failed discharges and re-admissions to hospital that Short-Term and Rehabilitation (STAR) facility would be best possible outcome this time. STAR is used to determine the care required over a 24hr period with a re-ablement approach through a period of assessment in a care environment. The purpose is to be able to discharge George home with the appropriate equipment, care and support network to prevent further hospital admissions.
While George was receiving care in the STAR facility, the Patient Flow Co-ordinator referred his carers, Margaret and Ena, to Sandra, the Hospital Carer Support Worker at Victoria Hospital, to develop a carer’s support plan with them. Sandra was able to listen to the concerns about care and family dynamics to establish the key outcome needed in an action plan to meet their own support needs as George’s carers. She explained her role as the Hospital Carer Support Worker for Fife Carers Centre and the support she could provide to Margaret and Ena to help them prepare for George’s discharge from hospital.
The outcome of Sandra’s visit to Margaret and Ena was productive and will be ongoing for the foreseeable future. Sandra discussed coping mechanisms and various methods of support and what requirements needed to be in place for George and Ena on his return to live in their home. She was able to support Margaret with an appropriate carer support plan and agreed to meet regularly for carer support whilst George was within STAR. Once George was back home Sandra was able to liaise with her community counterpart at Fife Carers Centre to provide a handover for continuity of support in the community setting.
This case study demonstrates the successful use of a multi-agency, cross-sector approach to facilitate a supported discharge for a patient and particularly the development of an outcome-based support plan for his carers. All involved have felt supported during a very difficult period in their lives.