If only Dementia care was under one organisation instead of the multitude of agencies, how can a medical diagnosis be a social services issue? It’s a terminal illness .... why isn’t it treated as such?
This I can never get over... I must be thick to not understand the convoluted systems that are in place.
I am happy to add my voice to try & get this disease recognised for what it is. Ironically more people will experience cancer than dementia according to the latest statistics, & the funding for cancer is on another planet compared to the funding for dementia!I completely agree this is a physical illness with a terminal stage, it is not a social care issue or even a mental health issue
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “ I certainly would happily lobby about this . It’s a huge injustice .
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “ I certainly would happily lobby about this . It’s a huge injustice .
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “ I certainly would happily lobby about this . It’s a huge injustice .
we need to get ourselves organised! My mums experience led to safeguarding issues being raised & now having sorted that - Dads experiences have raised safeguarding!!! I’m disgusted mostly by the whole charade carers are put through; but I have also met some lovely people who do have a moral conscience & make a big difference. Actually if I’m brutally honest they do their jobs.
Think that says it all....
I wonder what would happen if everyone on TP who is caring for a PWD emailed their MP on the same day describing the disjointed and unfair service we get? Or if we all turned up at our MPs surgery in the same week/month?
Maybe after Brexit!
I have read this thread from the beginning... it resonates so much
If my mother had cancer she would be scooped into a pathway.
If my mother had cancer, no one would have started any meeting with are you self funding?
If my mother had cancer she would have a named consultant, probably a specialist nurse all funded by the NHS
My mum is self funding. I can’t tell you it is much easier tbh. I have come up against the same struggles with when is the right time, guilt, desire to do the best, worry over how long the money can last (homes are £900 a week), lack of involvement by SW, GP, I don’t have LPOA H&W and therefore no control etc. Professionals usually hear we are self funding and leave. No assistance to discover what her needs are, what support is required, is she safe?
It isn’t acceptable , it’s scandalous. Some of the stories on here are horrific . Like you say there needs to be big changes and soon . I don’t for one minute expect Boris to do anything about it but just push it in to the long grass again.
I’m fairly irritated that now my mum has been declared end stage and we’ve been given 2 months I’ve been contacted by care support worker and the NHS has supplied 3 months worth of incontinence products. We have requested both much earlier on and been dismissed or ignored. I think the CSW will offer me respite...it’s a joke.
I composed a email explaining the present situation and past history.
I feel it is important we take every chance possible because every time we loosen a brick in the wall it is important for everyone.
Remember the Berlin Wall? When it was built it seemed invincible then suddenly it fell.
We must keep chipping away, it is all so unjust.
Last November our case was considered urgent. I have dealt with temporary Case Workers and should have a visit from a long term one on Monday.
Our daughter emailed MP about a week ago, a reply was received from an assistant who asked for more details.
My daughter gave me a copy and said I could pursue if I wished.
I composed a email explaining the present situation and past history.
I feel it is important we take every chance possible because every time we loosen a brick in the wall it is important for everyone.
Remember the Berlin Wall? When it was built it seemed invincible then suddenly it fell.
We must keep chipping away, it is all so unjust.