CHC success!

[Hdee]

I wanted to share our success at getting CHC funding for mum! I’m so happy, in the end she had 1 ‘severe’ - (for mobility), 4 ‘high’ and 3 ‘moderate’ from the assessment meeting. We had a lovely assessor who went and met mum before the meeting. After her spending £90,000 in fees so far it feels fair! I told mum today and she was over the moon. My advice is to get the care home staff on board, I arranged a meeting with Mum’s key worker and explained that we needed to explain how mum is on her worst day, she went through the care notes to make sure they were accurate with Mum’s current needs. Thank you for all your past posts on funding, I first found out about the funding from this group and prepared well for the meeting by reading your posts. I’m so relieved and wanted to share something positive. Take care all x

[Red6875]

Huge congratulations- that’s an incredible achievement! Xx

[DoingwhatIcan]

Hi Hdee… that’s brilliant news! We’re anxiously awaiting a chc reassessment after my dad has outlived his fast track. I went through the DST yesterday and got myself wound up that he no longer qualifies as he has deteriorated so much that he’s not unpredictable any more. Please forgive my asking, and don’t answer if you don’t feel comfortable… but could you give any small details on how your mum fits in the severe category? I think we have a few ‘high’s but that’s it…

Thanks so much! I’ll be taking your advice and meeting with the care home team beforehand as he’s in respite st the moment..

All the best x

[Hdee in reply to DoingwhatIcan]

Hi, apologies… I wrote mum was severe in the mobility category but I got that wrong… she is severe in the cognition category. We didn’t expect to get a severe here but she was awarded this as she isn’t able to understand risk, due to still trying to stand up at times when she is unable to and will have falls. The highs were in mobility, emotion/psychological, communication and nutrition. During the meeting They kept referencing the other four principles that they consider of - nature, intensity, complexity and unpredictability and how with psp there is often a huge element of complexity- with a lot of interplay between Mum’s needs - e.g. that communication affects emotional etc. This is just as important in their consideration so have a think about how they impact each other beforehand. I am sure they’ll continue with the funding for your dad, they have to take into account that PSP is a degenerative condition too. Good luck… if you have other questions please ask.

[DoingwhatIcan in reply to Hdee]

Thanks so much Hdee! I’m going to plan a prep meeting with the home… really appreciate your help

[AliBee1 in reply to DoingwhatIcan]

Good luck. I found Hdee's answer very informative.

[AliBee1]

Brilliant news. It will encourage others to try for it. Big hug AliBee

[daddyt]

A huge win for your mum... and you. It shouldn't have to be so difficult to get her the support she requires.

Tim

[Hidden]

We have Mum's assessment tomorrow so lovely to read good news. We've done so much prep. She's only been in the care home 6 weeks as we've managed to keep her at home so not sure the care home will be a lot of help. The Consultant and Parkinsons nurse are onside so fingers crossed

[Hdee in reply to Hidden]

Good luck! The good thing about the assessment is that they will ask for your opinion on each of the domains and I felt my comments were considered, so make sure you have notes on each with examples of why you feel she is a ‘high’, ‘moderate’ etc. Mum didn’t come into the actual assessment, I thought this was best as it would have been upsetting for her to hear us all discuss her at her worst. Let us know how you get on.

[Hidden in reply to Hdee]

Mum was accepted and we are so pleased but it's only what she deserves. The meeting was tough going and Mum didn't attend as she wouldn't have been able to contribute much but the facilitator was very fair and clearly explained the rational behind areas we thought were high and she thought moderate. It was definitely worth doing our hours of prep working through each domain and gathering evidence and making notes. As we suspected the care home weren't much help but we will be moving her to a nursing home. She's only been at a residential home temporarily as Dad couldn't manage at home and it's become very obvious in the last week or so she needs nursing care so this has come at just the right time to give her the care she needs and deserves after a lifetime of working for the NHS s

[Hdee in reply to Hidden]

I’m so happy for you and your family! It is such a relief and something good within the awful world of PSP. Well done for all your hard work and I hope it means your mum can get the support she needs.

[Hidden in reply to Hdee]

Thank you. It is a truly dreadful disease.