Vivien Zarucki’s mother has vascular dementia and needs nursing care 24 hours a day. Her mother spent a long time in hospital while the funding for her on-going care was arranged. Vivien feels that health and social care services should be working together more effectively.
Vivien Zarucki, 43, works as a financial advisor in Bournemouth. Until last year, her 76-year-old mother lived a short walk away in her own home. Recently her mother’s health has declined rapidly, and after a long stay in hospital she now lives in a nursing home where she gets the care she needs.
Vivien first noticed something might be wrong when her mother’s behaviour started to change. She had previously enjoyed reading, cooking and socialising, but she was doing these things less and less.
“She used to go to bingo a lot, meet up with her friends. Then she stopped going,” says Vivien. “She used to love baking these fruitcakes, and that stopped happening as well. And when you thought it through, you could see it’s all the things for which you require short term memory or concentration – following bingo numbers, following a recipe.”
It was only when her mother suffered a series of small strokes, and her health quickly deteriorated, that she was diagnosed with vascular dementia.
Initially Vivien tried to support her mother to stay living in her own home. But psychological and mental health needs meant her mother had to move, initially to a residential home, and then to a psychiatric hospital.
Following a major epileptic seizure, she was admitted to a general hospital, where she stayed for a number a months. It was clear she would not be well enough to return home, and longer term care arrangements needed to be made.
“They cared for her very well physically. The nursing staff were fantastic and lovely to Mum. But an acute ward on a general hospital isn’t kitted out. She had no treatment for her mental health, none at all,” says Vivien.
Vivien believed that her mother was medically fit for discharge after seven weeks, however she remained in hospital for five months. Vivien says that the primary reason for this delay in her discharge was “bureaucratic”; an inaccurate assessment by the PCT, followed by a dispute between the PCT and Social Services over funding. Once these issues had been resolved, Viven’s mother remained in hospital a further one and a half months because there were no spaces in the right nursing homes.
Vivien explains that the hospital used a single assessment process to work out what care her mother would need when she left hospital. She thinks that in principle this is a very good idea and could help make arranging on-going care easier.
“It saves someone having to go here, there and everywhere, all around the houses,” says Vivien.
In her mother’s case she felt this assessment process did not work as well as it could have done. Her mother’s condition was assessed to see if she had continuing healthcare needs. This would determine whether her nursing care would be funded by the NHS, but it took many weeks to finalise whether her mother qualified for this.
“At the bottom of all this is money, understandably,” Vivian says. “They are there to help and care within budgets, I understand that entirely. But whether it’s social care, whether it’s NHS, it should not delay the end user in receiving the care they need.”
“It’s like warfare between the different departments and there is no-one there who can just guide you through. Nothing makes it easy.”
Vivien believes the involvement of the discharge coordinator at the hospital helped to finally resolve the situation, although she also feels that the threat of legal action encouraged everyone to work together.
“In the end we just started the whole thing afresh, with the discharge coordinator and the multidisciplinary team, everyone in there. It was all done how it should have been done in the first place,” she says.
Vivien is thankful for the support she received from the Alzheimer’s Society for helping her make the right decisions.
“They have been fantastic. It’s putting you in touch with the right people, getting hold of the legislation for you.”
Her mother’s case was “borderline” and went to a panel for a final decision, but she appreciated how the discharge coordinator kept her informed about the process and what to expect.
“You’d much rather be told how it is. You’d rather take it on the chin and have the truth than be misled or misguided, so that you can prepare better for the future,” Vivien says.
Finally the continuing healthcare funding was awarded and Vivien’s mother is now in a nursing home where she can receive the 24 hour support that she needs for her physical and mental health needs.
“The nursing home is a much calmer environment and much better for her,” says Vivien.