Our Mum was diagnosed with vascular and Lewy bodies dementia about 2 years ago. Over the past 12 months, her condition deteriorated drastically. She was admitted into hospital in September 2019 after suffering a bad fall at home. Over the course of a 2 month long stay in hospital, Mum's condition degenerated much further. She was given 1 to 1 care for much of the time spent in hospital, primarily owing to her falls risk, unpredictable behaviours, and extreme anxiety. It was decided that Mum would have to move permanently to a care home upon leaving hospital. We struggled to find one which would accept her. Eventually one was put forward by the social worker at the time, and although they accepted her, they said that she really needed 1 to 1 care due to her challenging behaviours, severe anxiety and emotional distress. However, without any other options, and under considerable pressure from the hospital and social services, we agreed to Mum moving to this care home.
The care home soon contacted Mum's community mental health team and re-iterated the need for 1 to 1 care. The social worker submitted a funding application for this around Easter time and this was granted by the central health and commissioning group, however Mum became a self funder from Aug 2020 onwards, and the social worker has said they will no longer fund the 1:1, which together with the standard care home fees amounts to just short of £10,000 a month. I have tried to get clarity from the commissioning groups involved but just get mixed messages regarding funding responsibility, so we're no further forward, so the funds have had to be met from Mum's finances privately since August to ensure her level of care is maintained, and obviously they will be consumed very quickly as time goes on.
Mum was assessed for NHS Continuing Health Care before the pandemic, however this was declined as they said her medication had not been optimised. We understand another CHC initial assessment has been completed, and we're waiting for the local NHS CCG to follow this up and we have chased them.
It has been suggested that if the current care home is insisting that 1 to 1 care is necessary, it isn't the right place for Mum and perhaps another home would be better suited to her needs without the 1 to 1 care. We, the CPN and the SWs have investigated other care homes equipped to deal with very challenging dementia behaviours, but it's been a real struggle as one home which would have been suitable said no due to Mum's disinhibited behaviours and presentation, others have not had vacancies. The situation is made even more complicated due to the pandemic, not being able to visit homes, and being aware Mum won't understand why she's being moved which will only exacerbate her already high anxiety levels, distress and confusion.
Fundamentally, myself and my siblings are at a loss on what to do. Plainly, our Mum's care needs are not unique, but it feels that the only way she will continue to get the 1 to 1 care she supposedly needs is to pay for it privately. We feel we're just completely lost in this system, and it's very difficult to know where to turn, on top of the emotional turmoil of not having seen Mum for the past 6 months and not knowing when we'll be able to, as restrictions continue in Greater Manchester. It's a very worrying and stressful time for us all.
If anyone can offer advice regarding 1 to 1 care for dementia patients based on their own experiences I'd be very grateful.
The care home soon contacted Mum's community mental health team and re-iterated the need for 1 to 1 care. The social worker submitted a funding application for this around Easter time and this was granted by the central health and commissioning group, however Mum became a self funder from Aug 2020 onwards, and the social worker has said they will no longer fund the 1:1, which together with the standard care home fees amounts to just short of £10,000 a month. I have tried to get clarity from the commissioning groups involved but just get mixed messages regarding funding responsibility, so we're no further forward, so the funds have had to be met from Mum's finances privately since August to ensure her level of care is maintained, and obviously they will be consumed very quickly as time goes on.
Mum was assessed for NHS Continuing Health Care before the pandemic, however this was declined as they said her medication had not been optimised. We understand another CHC initial assessment has been completed, and we're waiting for the local NHS CCG to follow this up and we have chased them.
It has been suggested that if the current care home is insisting that 1 to 1 care is necessary, it isn't the right place for Mum and perhaps another home would be better suited to her needs without the 1 to 1 care. We, the CPN and the SWs have investigated other care homes equipped to deal with very challenging dementia behaviours, but it's been a real struggle as one home which would have been suitable said no due to Mum's disinhibited behaviours and presentation, others have not had vacancies. The situation is made even more complicated due to the pandemic, not being able to visit homes, and being aware Mum won't understand why she's being moved which will only exacerbate her already high anxiety levels, distress and confusion.
Fundamentally, myself and my siblings are at a loss on what to do. Plainly, our Mum's care needs are not unique, but it feels that the only way she will continue to get the 1 to 1 care she supposedly needs is to pay for it privately. We feel we're just completely lost in this system, and it's very difficult to know where to turn, on top of the emotional turmoil of not having seen Mum for the past 6 months and not knowing when we'll be able to, as restrictions continue in Greater Manchester. It's a very worrying and stressful time for us all.
If anyone can offer advice regarding 1 to 1 care for dementia patients based on their own experiences I'd be very grateful.
