How could services improve

[Rosalind]

Our CPN has asked me to attend a team meeting on how services could be improved - all field workers have been asked to invite a user or carer, for feedback from the horse's mouth.

Having agreed, my mind has gone blank. One thing I think would have helped is some sort of timeline on vascular dementia and what to expect, right from the diagnosis. I feel I was just chucked into caring for a condition I knew nothing about. Also some sort of training on how to handle difficult conflicts with husband would not come amiss - do I nag, do I explode, do I weep, or what?

I also feel I have got far more information from this site than anywhere else. At least I know about silly things like getting the sexes of the cats mixed up, reluctance to wash. When these things manifest themselves I am probably hyper about 'Oh no, another symptom of deterioration' but sometimes this sort of thing helps reassure me that it is not me that is going dotty.

There have been times in the past when I have really wondered if I was getting everything quite out of proportion and that there was not really much wrong with my husband, although now I get far more feedback from friends and relations about whether he is having a good or bad day, which makes it clear that his condition is now obvious to all.

Anyone out there got other points about service to carers?

 

[Helena]

First and foremost Carers should be adequately compensated for their work and devotion instead of being faced with all their savings and assets ripped away to pay for care home fees , respite etc

 

[Tender Face]

Hi Rosalind! My gut feel is that any kind of service provider (in any sphere) who actively seeks feedback from users is probably operating to a pretty high standard in the first place! How refreshing to see this line being taken at least SOMEWHERE in the NHS!!!!

I shouldn't worry about your mind going blank... I'd personally be keeping a little jotter with me to note down thoughts as they occur (probably a lot triggered just by reading around here). When I was drafting my (epic!) complaint to Audiology I found it really useful to re-read a thread I'd started here - and especially to look back at some of my own posts to remind me just what a dizzy spin they had got me in!!!!!

Tend to find in meetings too that another person's input will trigger allsorts.... (just attended an interesting one at work this morning which was meant to be a 10 minute job.... and spun out to 2 hours!!!)

Of course, if the service is really already operating at a high level, it's a nice chance for users to show their appreciation..... I've seen professionals in my field grow ten inches taller just on receiving a very positive piece of evaluation for work they've done ... that then reflects in their attitude.....

Sorry, waffling away...... good luck with it! Great initiative.... hhmmm.. working groups, now there's a thought.....

Love, Karen

PS: Would be really interesting if you have the time to get an update on how it goes (don't expect a full report!!!!)

 

[Rosalind]

Somehow, in trying to correct typo in title I have got this message up twice - wonder if a moderator could meld the two, and get Services right in heading? If so, thanks.

Anyway, Karen, you are quite right - should give praise and gratitude where it is due. Have just had CPN and Alz Support people here to review care package, and one more thing I have thought of is a set way whereby I can have a private word with them, not in earshot of my husband, when they visit - either on way back to their cars, or whatever. I feel a bit awkward telling tales about his bizarre behaviour in front of him.

Rosalind the bad typist

 

[Nutty Nan]

Rosalihnd, two things come to mind:

1. Information (which you have already touched on) - perhaps not everything in one go, as that would not be helpful either, but drip-fed, possibly by a CPN? Actually, just the fact that CPNs exist, and that they are often the most useful link between patients/carers/other agencies, is something I found out by chance, several years into this unexpected journey.

I may be in a minority here, but I would certainly like to sing the praises of our current CPN (previous ones would not match up to her at all). She visits regularly, as things got tougher, she made her appointments fortnightly instead of monthly, she lets me talk away freely, but she also asks pertinent questions which point me towards what may be the next hurdle, or what to be thankful for, as 'it' could easily be the next thing that is 'lost'........ She was also instrumental in getting Social Services to carry out a long-overdue assessment, and she has pointed out vital things such as applying for Attendance Allowance and similar.

2. Prompt action (as far as possible) from Social Services for Assessments, or at least honest answers as to timescales and sequence of events. They do not seem to appreciate that by the time a carer asks for help, he/she is usually pretty desperate. We all try to prove to ourselves and all and sundry that we can cope. Asking for help seems like an admission of weakness, and as we don't know the system, we have no idea what sort of help may be available. On several occasions, Social Services have said "if you need anything, just give us a ring and ask". In all honesty, with most of the real problems I couldn't have imagined what to ask for!

To illustrate what I mean: when it became obvious that my husband was not coping on his own any longer (I am still working), unable to use the telephone, failing to locate the 'fridge to help himself to his prepared lunch or a drink, etc. etc., I was convinced that the only solution would be for me to give up work (a job which, incidentally, I enjoy!). Her comment was "There is NO need for you to give up work. If you were a man you would not say that! There is lots of help we can give you. I will come and carry out an Assessment at your home, and we will take it from there. I can't wait to meet your lovely husband!"

Call it naive, but I thought my prayers had been answered. That was in February 05. By Easter I was still waiting for an appointment for the Assessment. To cut a seemingly endless story short, after countless phone calls and letters, and a desperate statement from myself that I would definitely not be able to go back to work after the Summer Holidays (I work in a school), a care package was arranged at the end of August, a care agency did their assessment on Sept 1st, and the carer started one day before my return to work ...... It was a very stressful time, and although everyone told me that we were entitled to help, I felt very guilty for 'demanding' it in the end.

Apart from a slightly more prompt response, it would have been helpful to know that 'action' may take this long, and I have often wondered how much longer we would have been left 'hanging on', had I not been forced to stamp my feet because I was due to resume work at the beginning of September. I suspect that family members who are more available, i.e. not committed to a job, are much less likely to be offered help with carers for their loved ones.

Rosalind, your question has taken me down memory lane, and I realise I have been rambling - apologies! Perhaps my contribution will help you make some suggestions.

Thanks for volunteering your time!

 

[May]

Brave you Rosalind, I echo thanks for giving your time on behalf of all of us. Like you I've had more info from this site than anywhere else. But a few of suggestions if they are of any use.
1) If dementia's diagnosed make certain the consultant gives it to who ever is concerned in a clear and unambiguous form of words, (As you may have guessed in our situation this was not the case)with a chance to ask questions either at the time or later followed by IMMEDIATE referral to a CPN.
2) 'Joined up thinking', ie information from a central point on who does what and who provides the various services & allowances available when necessary.
3) The need to care as much for the 'carer' as the 'cared for'. Carers WILL run themselves into the ground coping, it's their nature.
4)The need for professionals to be scrupulously honest about when services will become available. In our case we had a delay of six months and by that time they couldn't start anyway as Mum had been admitted to hospital as an emergency! We were told two months and nothing, I called and was told you're second on the list, another month nothing, again your nearly at the top of the waiting list At this point I had what might be termed a 'fair and frank' exchange of views with the team leader , I was polite and did acknowledge that I understood resources were finite, but I did point out it of no use giving dates and then not being able to commit to them, much better to give a realistic answer, even if it is a difficult conversation to have with the carer, raising hope that help is in sight is liable to cause more stress if it cannot be delivered.
Good luck Rosalind, let us know how it goes

PS. Nothing but praise for DWP, they were brilliant.

 

[Norman]

I feel I was just chucked into caring for a condition I knew nothing about.

Hi Rosalind.
Make more information readily available for carers like you


Set up a reference group of carers and meet about every 8 weeks to discuss and raise items of concern.
Have senior managers from NHS,and Social care and Health,present.
Items not resolved go forward to the next meeting.

Produce a booklet of useful telephone numbers.
Your suggestion for training is a good one tried and proven in the Midlands.
Short 1 hour courses on every aspect of dealing with a Dementia sufferer.
Hope this is helpful.
I am still giving my talks on "Living with Dementia" that way I can fly the flag for TP!!
Norman

 

[Margarita]

For me it’s the other way around don’t know what I would of done with out my social worker , she a great help & gets every thing organised when I need a carer to come in for mum , get a taxi for me & up to take us & pick us up from respite , organised another day for mum at AZ day centre .

 

[shauny]

services

hi rosalind, im a social worker who thinks this forum is a godsend for carers and families. I have said this elsewhere on TP we live in a postcode lottery society im afraid. Shauny

 

[Lila13]

I wrote long detailed letters to the nurse in the hospital where my mother died, and to her GP. I don't get the impression that they take any notice.

The first social worker was very good, but the second one was worse than useless.

Of course each can off-load responsibility to the others, I went to see the GP and she said I'd have to talk to the people at the hospital (knowing it's too far away for me to get there easily) or to Social Services etc.

I don't know whether any of these people could have prevented my mother from dying when she did, I just think they could have improved her quality of life while she was here, instead of increasing our general state of confusion.

Lila