CONTINUING HEALTH CARE FUNDING

[knittingannie]

Article by Rachel Mortimer in the Telegraph sunday 27/11/22

re CONTINUING HEALTH CARE Funding

well worth a read and worth contacting yourMP.

Action is needed to improve the care to patients with severe health needs .Victoria Derbyshire tried but seemed to come up against a brick wall.Thousands are suffering managing alone to care for loved ones

[Khalissi]

I 💯 agree with you. The lack of understanding from medical professionals on PSP is draining - the amount of times I have had to explain what it is, how it impacts my dad and the daily unknown challenges. We have been trying to get CHC since last month to no avail. No adult social care either has been provided. I wish PSP was more commonly known to others or at least the effort to try and understand this horrible disease.

[AlliD]

I was caring for my husband with the help of one carer visit a day to get him up in the mornings. This time last year I was juggling working from home, looking after my husband and struggling with my arthritis. I had a complete meltdown and decided to go to my GP. She was great and organised a palliative care nurse for him and other things. The district nurse visited the following week and asked me a series of questions. She then said she’d put him forward for CHC. That care was an absolute godsend. We’d now got carers coming in four times a day and the relief was immense. Out of the blue, once he was bedbound I had a phone call to say our local NHS trust needed to assess whether he needed specialist care or personal care. This assessment took place over Zoom with the assessor and a social worker. The assessor gave her decision on each question and the social worker chipped in if she disagreed. At the end the assessor said he only needed personal care at the beginning and end of the day. I burst into tears and explained again that he needs to be turned four times a day to prevent bedsores but the decision was made. The social worker had googled PSP before the meeting but the assessor said she’d never heard of it.

I was in tears for the rest of the day and barely slept that night. The next morning I got a call from the assessor to say that she’d googled condition and had taken my advice to look at the PSPA website and she was reversing her decision! She was very different in this call, very empathetic and said she now understood why I was so upset at her decision. I was very grateful she’d taken the time to look at the website after our meeting and for her saying in the call she would make sure her colleagues were made aware of the condition.