I had my CHC Assessment today. It took nearly 4 hours. The MDT team were strangers except my social worker who I met previously. No one came to represent my health needs so I had to rely on my own ability to think of everything I struggle with and find letters as evidence.
They were shocked I had no MND nurse or coordinator. I was referred to falls team in January but had never been seen. Had no strategy in place for if I choke despite being assessed high risk. Had no OT input so no help with transfer aids or a manual handling belt (which sounded scary but I'm assured isn't), no referral to pain clinic (as I have other issues that exacerbate pain), no Pressure Assessment... and the list goes on. So therefore hard to prove my issues or my 20%weight loss. They just looked shocked. I ended up in tears and said I was extremely scared by my lack of health support.
I just don't think I can go through much more of this stuff before I withdraw completely and give up. I feel like writing HELP in blood on my forehead... but no one will notice.
Fingers crossed I get good news. But it seems very hard to meet their criteria.
They were shocked I had no MND nurse or coordinator. I was referred to falls team in January but had never been seen. Had no strategy in place for if I choke despite being assessed high risk. Had no OT input so no help with transfer aids or a manual handling belt (which sounded scary but I'm assured isn't), no referral to pain clinic (as I have other issues that exacerbate pain), no Pressure Assessment... and the list goes on. So therefore hard to prove my issues or my 20%weight loss. They just looked shocked. I ended up in tears and said I was extremely scared by my lack of health support.
I just don't think I can go through much more of this stuff before I withdraw completely and give up. I feel like writing HELP in blood on my forehead... but no one will notice.
Fingers crossed I get good news. But it seems very hard to meet their criteria.
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