What is your local NHS Trust like?

[Tragicuglyducky]

Everything that I have needed from our memory team or CMHT seems to only be possible through the person who has been assigned to my dad. I went to see my dad yesterday and it turns out that he didn't know how to get himself a drink. He's been thirsty all day! Today I decided that I need to find out how to get the ball rolling for setting up regular visits from carers. Rang my memory team, the nurse was out on a visit today and the best I could get from the person answering the phone was that they would leave a message for the nurse to call me back. I know they won't call me back today. I know that after 2 days I will need to chase them. I know that when I chase them the nurse won't be in again. And the cycle begins again. This is why it took 3 months to get the initial memory assessment and another 2 months to get a diagnosis!

Am I doing something wrong? Are the people who answer the phones purely telephony staff that have NO KNOWLEDGE whatsoever that they can't even give me a general idea?

 

[Beate]

I would have thought that to organise regular carers you need to contact adult services rather than the memory team?

 

[Sue J]

I have been trying for 7 years to get regular help via NHS - I was phoned the other day to be told 'I'm not forgotten', I felt like it was just to check I was still alive. I have fared better arranging own care through Age UK.

 

[Shedrech]

Hi Tragicuglyducky
please do as Beate suggests, contact your Local Authority's Adult Care service and ask for an urgent assessment of your dad's care needs
stress that you are really concerned as he does not seem to know how to get himself a drink so he's at risk of dehydration, which will worsen his dementia

 

[byrnedjp]

Ive used Dementia advisers, Carers Centre staff, Advocates,Social services, Ageuk, Mind, Community matrons etc....Support is so fractured and random that a Carer has to contact as many people as possible in order to get decent help. If only all these agencies actually spoke to each other - Oh and also once youve established a relationship with any of the above do not be surprised if they disappear on "long term sick leave"

 

[WORRIER123]

Definitely adult care. Our one was the opposite and insisted dad had carers and I live at home with him
They kept chasing me up
I called for a carers assessment and they were back to me within the hour so I do think it depends on the area which shouldn't be the case
Keep on at them. Duty of care and all that
Good luck

 

[Sue J]

Definitely adult care. Our one was the opposite and insisted dad had carers and I live at home with him
They kept chasing me up
I called for a carers assessment and they were back to me within the hour so I do think it depends on the area which shouldn't be the case
Keep on at them. Duty of care and all that
Good luck

Reading on here it most definitely does depend on area. I have tried Adult Care Services both for myself and my friend, whose situation is worse than mine and despite telling them they listen to her and close the case, I'm afraid they use her dementia symptoms as their excuse not to provide care and don't look at need. Very sad but true. I hope you have a better experience Tragicuglyducky.

 

[Tragicuglyducky]

Thanks guys, just found a number for adult care so I'll try them tomorrow. I don't know how to start the process of social care so that's why I called the memory team. I don't seem to know anything and it's devastating that the person on the end of the phone isn't more helpful. I explained why I was calling, could the person who took the call not tell me to call adult care? It eats me up so much that I'm expected to know things I just don't! All I can say is I'm so so so grateful for this forum and the plethora of guidance and suggestions of the users here!

 

[Sue J]

Thanks guys, just found a number for adult care so I'll try them tomorrow. I don't know how to start the process of social care so that's why I called the memory team. I don't seem to know anything and it's devastating that the person on the end of the phone isn't more helpful. I explained why I was calling, could the person who took the call not tell me to call adult care? It eats me up so much that I'm expected to know things I just don't! All I can say is I'm so so so grateful for this forum and the plethora of guidance and suggestions of the users here!

Don't be fobbed off by them but insist on an assessment of need and be there when it happens. Hope you get on OK.

 

[WORRIER123]

Yes keep insisting
I felt like a bad child being told dad must have care. He has dementia diagnosed in October and although he cannot make his own meals etc he isn't as bad as some people I hear about on here
Even now they hound me to come and do reviews. Postcode lottery !

 

[Kevinl]

Get an e-mail address and start getting it in writing, start a paper trail. Social Services and the like hate you putting it in writing that way they can't pretend they didn't get the message. Social Services usually and the care teams all use e-mail but they hate letting the general public in on it. Have a google around and find the nearest appropriate e-mail and you'll probably find they forward it to the right person.
It took me 30 seconds to find the "general enquiries" e-mail address for both the memory assessment team and the local resource centre both of which my wife has attended. In answer to the last bit, as far as I've seen it the phones are usually staffed by a receptionist so you're unlikely to get anything useful off them other than a message forwarding service.
K

 

[Otiruz]

One of the most tragic elements of having dementia or trying to help someone suffering from it, is that there are no set criteria of assistance set down by any local authority, governing body or health professional. Every single path I have ever read on TP seems to vary in its' direction. Perhaps it's about time the Alzheimer's Society lobbied government to address this sorry state of affairs?

If I have cancer my GP refers me to a specialist, the specialist decides on my treatment, my chemo/radiation/operation is organised by my health authority. If I have dementia I'm left to flounder and wander from here to there occasionally bumping into someone who can help.... (this is not meant to demean anyone who has, or is having excellent help). It just seems on the whole, to be disorganised. Look at us on here who are trying to help each other - wonderful in so many ways, but most of us have had completely different experiences in terms of assistance, advice and care. (Think this may have been my first rant). Tragicuglyducky I sincerely hope you get the care and support you and your dad deserve.

 

[velocity]

This eats me up too, its really frustrating, 'Fobbing off' and 'not knowing' seems to be an art in itself these days. Its literally drives me round the bed aaaaaaarhg
And of course that blank look
Lots of luck xx

 

[velocity]

Something needs to happen to help the whole situation.

 

[Sue J]

One of the most tragic elements of having dementia or trying to help someone suffering from it, is that there are no set criteria of assistance set down by any local authority, governing body or health professional. Every single path I have ever read on TP seems to vary in its' direction. Perhaps it's about time the Alzheimer's Society lobbied government to address this sorry state of affairs?

If I have cancer my GP refers me to a specialist, the specialist decides on my treatment, my chemo/radiation/operation is organised by my health authority. If I have dementia I'm left to flounder and wander from here to there occasionally bumping into someone who can help.... (this is not meant to demean anyone who has, or is having excellent help). It just seems on the whole, to be disorganised. Look at us on here who are trying to help each other - wonderful in so many ways, but most of us have had completely different experiences in terms of assistance, advice and care. (Think this may have been my first rant). Tragicuglyducky I sincerely hope you get the care and support you and your dad deserve.

You are right Otiruz. The GP's option it would seem is to refer to the Memory Clinic - well where I am the Memory Clinic means they forget about you when you claim there is nothing wrong with you and no further follow up. When one of the symptoms of the illness is 'denial' - much has still to be learnt.

 

[Otiruz]

You are right Otiruz. The GP's option it would seem is to refer to the Memory Clinic - well where I am the Memory Clinic means they forget about you when you claim there is nothing wrong with you and no further follow up. When one of the symptoms of the illness is 'denial' - much has still to be learnt.

You are so right Sue J. Maybe in time all the information can be collated from this forum and used to help formalise a system of diagnosis and care in the future. X

 

[Sue J]

You are so right Sue J. Maybe in time all the information can be collated from this forum and used to help formalise a system of diagnosis and care in the future. X

I really hope so Otiruz. It would make life easier for everyone.

 

[Dave66]

Hi Tragicuglyducky

What a frustrating situation you have.
Another example of funding, demand and the postcode lottery.
We are fortunate with the help on offer for Mam in this corner of the country.


Mam has a Social Worker/Mental Health Nurse, Support Workers, Adult Social Care (Carers), Occupational Therapy, Alzheimer Society Ladies, Admiral Nurse. All of these I have direct contact numbers for and email address. Most of these services I believe are contracted out now by our Council, excluding AN & AS ladies of course.

Whenever anyone visits Mam, I ask for contact details. I never ring anyone, I prefer emails and the back up they offer, but it is handy to have a number in case of an emergency.

Contact Adult Social Care, ask them to do an assessment. Contact Admiral Nurse, if you have one in your area. Contact the local branch of the Alzheimer Society and see if someone can come out and visit you, you should get plenty of advice and help from them. Ask the GP for contact details of any Council agencies/organisations etc and get ringing/emailing them.

Good luck

 

[Tragicuglyducky]

Thanks guys! Getting everything down in writing is an excellent idea! I'm already feeling the need to prove how much I have had to beg for assustance! And yes, "floundering" is the perfect way to describe this so far! When I tried to get a memory assessment for my dad this is the order I went in: psychiatrist's secretary, community mental health team, memory team, GP, nurse at local surgery, memory team. Painfully kafkaesque! It would be a brilliant idea to get better structure in the Nhs to deal with dementia! I was especially disappointed with my experiences because you see a lot of advertising campaigns about dementia, I was under the impression that it is taken seriously yet so far I think no one can be bothered to deal with it!

 

[fizzie]

If you can find your local carers cafe you will get a lot of local info and support there and a free cuppa too. People don't judge you, they are there to help you and the amount of local knowledge that floats about is amazing. I don't know where you live or I would search it out for you.
As the others have said Adult Social Care duty desk and get an email. The 'lose' phone messages'!!!!