Asking for help

I’m wondering if my experience is common regarding asking for help from S.S adult care. I was referred by Parkinson’s nurse after struggling with my husbands care. I waited 3weeks & the Social worker that came had no experience of Parkinson’s. Did not know if carers would have knowledge of PD. Did not know if respite care would have knowledge of PD. I really felt this for me had to be paramount to understand his needs & provide the help needed. I was told I would have forms sent to me to fill out for a financial assessment & left me with lots of paperwork to read. I was also told to look up local care homes to see if they provide for PD clients. Not what help I expected or am I expecting to much.


Good evening Jane0804 … It sounds as though you have been unlucky with the social worker you were sent.

Mine was wonderful & did everything for me & more. A real 11/10 performance.

Of course it may be that I am single, live alone & have Parkinson’s. I would probably have struggled to fill out the forms so I was grateful it was all done for me.

I do think I was very lucky with the person who helped me.

Best of luck.

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I find it unacceptable on how much is placed on the caregivers shoulder.

Since not living on the UK I can’t really have an opinion on your system, but from reading many posts on this forum I kind of have an idea :angry:.

Here in Switzerland its an administrative nightmare.
While hubby has access to his GP & Neuro pretty much when he wants it also comes with high obligatory monthly healthcare insurance costs, deductibles & copay.

Caregivers (mostly burned out & tiered to their bones…I know I am) dont get any recognition whatsoever.
The amounts (cant remember the exact one) on how much the cantons (unsure about the UK equivalent) are saving on placing the majority of responsibility on the carer was a shocking read). So no surprise there that nothing ever changes. Sigh! Rant over :upside_down_face:

I agree. It’s very untenable and stressful being a carer. My partner has managed his Parkinson’s very well for 10 years but after xmas he had a huge decline - I know think he had a massive cognitive reserve which meant he was operating well despite Parkinson’s dementia which he has just been diagnosed with. Anyway, I had never had to do anything with the Parkinson’s nurse or hospital before this and I was suddenly thrown into a world that I had no knowledge of except for the neuro rehab team who had come to our house last year to work with my partner on his mobility. They were a god send as I reached out to them again and they put in back in touch with the right people. Looking back, I wish that the PD nurse and neurology team had thought to schedule an appointment with the two of us - like a special session for the carer and the PD person… just to go through issues that might arise, who to contact and everything.

As it happens, my husband has good savings and I’ve now gone down private carers route - this is because I discussed care home options with PD nurse and others and was advised this is really last stage as they think my partner would deteriorate rapidly. I did get him a care needs assessment and a social worker - they are looking into a stair life but they referred us to the OH of the council and I know from last time - when we were referred it took nearly 2 years but we did end up with a full level access shower and wet room.

Paying for private carers gives us a level of control and ability to talk to someone who manages the agency about what they can do, how to work with people with PD. It’s not the total solution and there is still stress on my and my 19 year old son. But having professionals come in 2 times on 5 days a week does give us a breather.

Social services haven’t been very helpful yet but at least we have a named social worker and he is in the system. I feel like if there is an emergency then at least they will have to do something - for me, when the professional carers say they really can’t move him, then he will have to go into a home. I think.

Hi Steve2 I’m so glad you got the support needed your very lucky. I’m still waiting iv heard nothing since seeing the S.W. 2weeks ago. Reading the responses from others it’s hit & miss.

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