Nottingham and Nottinghamshire ICB

My Parents End of Life Journey

Personal Health Budget

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My mum “Tina” became unwell in 2008, she had suffered a brain haemorrhage and a small number of hours were provided for care to provide support, this was through personal budget. Upon her health needs increasing, in 2016, mum became eligibility for Continuing Healthcare, a care and support plan was developed jointly to meet all her needs with clear outcomes. In 2018 mum suffered a further brain haemorrhage and in the same year my father “Mike” was diagnosed with cancer and mixed Alzheimer’s and vascular dementia.

This was devastating, both my parents were unable to cope anymore. It raised
concerns on where and how care may be delivered, my parents’ choice was always
to remain at home. Mum remained eligible for Continuing Healthcare and during
personalised conversations with the clinicians and personal health budget
coordinators a personal health budget for my mum was possible, this was a huge
relief to her and the family. Our fears were that mums’ needs were such that she
would require to be in a care setting, which would not have been right for mum. My
parent’s relationship flourished during time with the care in place.

Unfortunately, mum’s health deteriorated during 2020 following problems with potassium levels, she had multiple failed hospital discharges and as a family we struggled, it was becoming overwhelming, and we could not manage. There were thoughts of her going into a care setting however we knew this would have been detrimental and mum wouldn’t have coped, it would have massively impacted her already fragile mental state.

Upon further personalised conversations with the clinician, personal health budget coordinator, mum’s personal health budget was reviewed, and the appropriate care hours were provided to meet all of her needs at home, which was such a relief to her and the family, knowing she wouldn’t be taken away from everything that was important to her.

Her final 3 years of life were exactly how she wanted them to be, cared for at home
by employing personal assistants, she had her own bungalow, her family, had her
cat, was safe and she was cared for. It was important for mum to feel in control of
her own life, she was central to all the decisions and was provided the time required
to process, understand, and make informed decisions all the ways through.

My father’s battle with cancer also became difficult in 2021, after struggling to
navigate the system and barriers, he was granted eligibility for fast-track funding. It
was disappointing that funding wasn’t available a few months earlier as this would
have made a big difference to Dad’s quality of life.

My father sadly passed on the 3rd November 2021 and mum sadly passed only 25 days later the 28th November 2021. It brings huge comfort and warmth when grieving to know they that their end-of-life journey was valued, and they had full control of that journey and made choices that were right for them and knowing that both parents had good deaths.

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