My mum

[marshfarmcat]

Will try to be brief... Diagnosed in May 2017 after a very serious fall in August 2016 which left her with a TBI, as having PSP and possibly CBD, in a nursing home now and I’m still fighting with social services for CHC funding, the nursing home is good and they know about her condition but she has no specific care package to my knowledge, no physio, no speech therapy and no plan for dealing with what seems to me a rapid deterioration, she spends most of her time in bed as the struggle to be mobile with a rotator is now getting the better of her. I’m sure this is an all too familiar story, I have had two years of hell trying to get anyone to help me, I have my MP involved on my behalf to get CHC in place. Her house is a whole other story that no solicitor in the land seems to be able to help me with.. thanks for reading

[Marie_14]

Welcome to the site but sad you need to be here. Everyone is very kind and helpful though. You will get lots of advice. Think they are all having their afternoon naps now! 😊

I am surprised if the Nursing Home understands PSP they are not giving or organising speech therapy and physio for your Mum. Physio will really help her a lot. Speech therapy can help if you get the SALT involved from your local hospital. Have you got anyone involved? You sound very isolated. You need the Neurologist to draw up a Care plan for your Mum as that should kick start things. As for CHC well you have done the right thing going to your MP. Hope he/she is worth the salary and helps! Might be an idea to tell him/her that there are therapies which could help but you need advice from the Neurologist. You might get help with that too?

Tell us a bit more about your Mum and how she is being treated now. Lots of people on here going through the process now who can point you in the right direction. Have you got Power of Autorney for Health and Finances in place? Also a DNR if your Mum is happy with that?

Hugs to you.

Marie x

[marshfarmcat in reply to Marie_14]

I am very isolated, I’m single, late 40’s and work full time. I have been totally consumed by trying to get suitable care for my mum, because of the TBI clouding the issue she has been passed backwards and forwards between the two funding panels, health and brain injury although the neurologist said the TBI was of no consequence to her condition, more likely the condition had caused the TBI. She last saw him in May 2017 and I’ve no idea if or when she will see him again, he was at the brain injury north east wales centre. I have not heard from social services since November last year when I had a meeting to address my formal complaint during which it was suggested I should contact the funding panel to chase it up. I do have LPA’s for both finance and health but have not addressed the DNR subject with my Mum yet, I haven’t really even discussed her condition with her and I don’t know how to. The nursing home have had her measured for a ‘crash helmet’ to try and protect her when she falls but no other therapy has been offered as yet. Thanks for replying xxx

[Marie_14 in reply to marshfarmcat]

This is possibly the worst case of downright neglect I have heard for a long time. I am not far away from you so if you want to meet up for a chat and a coffee I am happy to do so. I certainly don't know everything but they are neglecting your Mum. By they I mean the NHS. Is Mark Tami your MP or is he the one for Wrexham? You need an appointment to tell him that your Mother is not being looked after. In fact put it in writing then you will have to get a reply. If you want to meet up let me know?

Marie x

[Tippyleaf]

Welcome to the site, where we understand the challenges and share frustrations - great place to get info and practical guidance - sorry you have had to join us - sounds like you have had a hellish time

Take care

Tippy xxx

[raincitygirl]

Dear Marshfarmcat,

I add my voice to those welcoming you to this site. At this time it sounds like you need practical help navigating the UK health system, so I'll stay out of it, but I'm glad you've found us - you won't feel so alone now

Good luck!

Anne G. (Canada)

[marshfarmcat in reply to raincitygirl]

Ha. Yep it’s a mine field. Thanks xx

[Mikey12345]

I feel like the American counterpart of your story except we don't have a medical system as helpful as yours if you can navigate it.

Good luck. I'm sure the others will guide you through the maze.

Hugs,

Liz