For many carers, when the person they care for leaves hospital, it can be an overwhelming and frustrating time. Many feel as though they are not considered or involved in the planning or discharge process. Roberta has been one of Carers First’s Trustees for two and a half years, advocating for awareness of carers’ rights. Her story shines a light on those experiences and highlights a need for change in the hospital discharge process for both carers and their cared for.
Roberta cares for her elderly parents. Her mum was diagnosed with Alzheimer’s in 2019, and her dad is frail with COPD (Chronic obstructive pulmonary disease). Some of her caring responsibilities include managing the household and medical admin, shopping, washing, cleaning and taking care of the house. While Roberta cares for both parents, her dad is also a carer for Roberta’s mum. Roberta’s dad recently contracted an infection which led to a hospital admission lasting six weeks.
From the very beginning of the hospital stay, there were miscommunications about his care needs between the medical staff and departments which caused disruption to their daily routine. It would often take days for scans, tests, and reviews of his progress. For Roberta this meant that caring for both her dad and mum while he was in hospital became extremely complex and difficult to manage.
Roberta shares, "It was unpredictable, everything was short notice, and I couldn't plan ahead."
She explains how she felt hospital staff dismissed the caring role, rather than taking it into consideration,
“As my dad’s carer, I made sure I spoke to doctors and nurses to make them aware of our caring roles. But it didn’t feel like it was acknowledged or relevant to them.”
Roberta’s dad had contact with an Admiral nurse, who took him into hospital when he initially became unwell. He was helpful in supporting both of them and even made the hospital team aware of his needs and the caring situation at home. Despite this, the hospital team took no course of action to provide him with a Carer’s Assessment or a support plan regarding his role.
During this time, Roberta’s mum was not receiving any additional support at home, leaving Roberta with no choice but to move in with her mum to be her full-time round-the-clock carer and feeling completely overwhelmed.
Roberta expressed her concerns over the hospital’s decision to discharge her dad without carrying out any proper assessments to observe his wellbeing and ability to continue in his caring role, “I was told on a Monday morning he’d be discharged that same afternoon. This came as a shock as he still needed an assessment. It was completely disregarded. I wasn’t involved in any discharge planning.”
Safeguarding concerns were raised by Roberta after the hospital staff failed to explain the medications to her dad upon his discharge, including liquid medication which he could not administer himself due to his visual impairments, and yet he was still expected to be fit to leave the hospital and continue his caring duties at home. Throughout this stressful ordeal Roberta was left in the dark and wasn’t offered the chance to be involved in the planning or contingency plans.
Roberta’s story represents the thousands of carers who have been uninformed and disregarded when their cared for leaves hospital. She emphasises the need for positive change in how hospitals and healthcare professionals involve carers in the hospital discharge process, especially after a long stay “Even just an acknowledgement of carers rights by hospital staff and social services would be a step in the right direction. It’s also important that carers know their rights and what to ask for and how to advocate, in moments of stress.”
Like many carers, Roberta had to discover the information and support she could access for both herself and her parents without the help of health and social care professionals. Her advice to other carers would be,
“Don’t be afraid to ask, make your caring role known to each doctor and nurse you talk to. They want to help but are often busy and there can be many handovers between teams. Take any help you can get. Know that you might have to ask for it more than once but keep going. Reach out to Carers First and make use of their resources and support. It’s about knowing that someone out there says “I see you, and I can help you.”
If you feel inspired by Roberta’s story and would like to share your own experiences, get in touch with our team today.
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