Asking for your input again!

[Skye]

A couple of years ago I asked for your experiences of care for patients with dementia in hospital. The result of that was a report which has proved very useful in improving standards.

Now I’m asking for your experiences of care in the community.

Some of you will know that last year the Scottish government issued guidelines for integrating care in the community for mental health patients, including dementia. Each area now has to submit its own plan for implementing these guidelines. I’m on the dementia panel, and as most of the others are clinicians, I’m finding it hard to get across that it’s not just a matter of agreeing who should be prescribed anticholinesterase and antipsychotic medication. What I want is an integrated package across all agencies. I’m fighting hard!

What I’d like is for as many of you as possible to answer some questions. I stress that this is an informal survey, purely for my own interest. However, if I get enough replies, I’ll collate them and post them here for anyone to use.

If you are afraid of being identified, I’d be happy to receive PMs. And if you haven’t identified where you’re from in your profile, I’d be grateful if you could at least give me the country – though this isn’t essential. Don’t feel obliged to answer all questions, any information will be valuable.

Finally, Katharine, I don’t think this breaches the new guidelines, but if it does, please feel free to remove.

I. Do you have a social worker?
II. Do you have a CPN?
III. Do you have an overall care co-ordinator? If so, is he/she SW, CPN, other?
IV. Have you had one of the above, but been discharged?
V. If so, do you have an emergency number to call if needed?
VI. Do you feel confident that that help is there if required?
VII. Does anyone ring regularly to check how thing are?
VIII. Are you satisfied with the care you are receiving/have received?


Thank you in advance,

 

[Grannie G]

Here we go.

Good simple easy to answer questions Hazel.

Q1
A No.

Q2
A Yes.

Q3
A Yes. CPN.

Q4
A Yes. SW. File closed.

Q5
A Yes.

Q6
A Yes.

Q7
A Yes. CPN rings or visits.

Q8
A Yes.

 

[Skye]

Thanks, Sylvia. Perfect!

 

[Helen33]

Hi Hazel

1)No

2)No

3)No

4)Yes

5)No

6)No, not confident

7)No

8)Yes

This has been quite difficult to answer because several of the above have popped in and out of our lives but nothing is at all clear as to who does what. I feel the services are like a plate of spaghetti - all intertwined and ravelled up.

The only 2 people who ring to see how we are, are the lady from the AZ Soc. who has always been very clear about her and the AZ Soc. roles and the man from the Princess Royal Trust who I've never met but I rang them once to query assistance and I was very surprised when he followed up a month later to see how we were.

Love

 

[Skye]

This has been quite difficult to answer because several of the above have popped in and out of our lives but nothing is at all clear as to who does what. I feel the services are like a plate of spaghetti - all intertwined and ravelled up.

Thank you Helen!

That's exactly what I feel, and I'm trying to untangle them.

One of my points is that besides being better for the carer, it will actually be more economic, as it will avoid duplication of labour!

 

[christine_batch]

Just in case it may help

Dear Hazel,

I am completing the list upto the time Peter went into Nursing Home.

1. Yes

2. No

3. Never met one

4. Yes File closed on admission to N.H.

5. No

6. No

7. No

8. No

The only organisation always available for help & support was the Alzheimer's Local Branch.

Good Luck
Christine

 

[jenniferpa]

Hazel - I'm doing this from the period from when my mother had her strokes until I moved her to extra-care (where these sort of functions were taken over by a paid care manager). County of Lincolnshire, incidentally.

Answers to all questions: No. The nearest thing we ever had was a hospital social worker who I spoke to once by phone who once they discovered we were self-funding I never heard from again.

 

[Skye]

Thanks, Christine and Jennifer.

I should have put that past experiences were also valid.

 

[ROSEANN]

Hi Hazel

1 Yes
2 Did have one seems to have disapeared
3 No
4 Yes file closed then reopened
5 Yes
6 No
7 No
8 Not really

The most surport we get is from our local AZ cafe who also arranged day care,they also let me know if they think there is a change in my husband.

Hope this helps, we are in Staffordshire

Love Roseann

 

[sue38]

Hi Hazel

I. We did have a SW but her contract was terminated 2 weeks ago, not heard if we have been assigned a new SW/CPN yet.

II. We have had a few visits from a CPN but in our area you either get a SW or a CPN, not both. We got the impression this was for his CV so he could become a care coordinator.

III. Yes, see I. above!

IV. Not yet. It's actually the SW who has been discharged!

V. No

VI. No

VII. No

VIII. No

Sorry that I - IV are not simple answers and may not help.

 

[Skye]

That's fine Sue, thanks.

And thanks, Roseann.

 

[lesmisralbles]

I. Do you have a social worker?
II. Do you have a CPN?
III. Do you have an overall care co-ordinator? If so, is he/she SW, CPN, other?
IV. Have you had one of the above, but been discharged?
V. If so, do you have an emergency number to call if needed?
VI. Do you feel confident that that help is there if required?
VII. Does anyone ring regularly to check how thing are?
VIII. Are you satisfied with the care you are receiving/have received?


I. YES
II. YES (SHE IS THE SOCIAL WORKER)
III. NO
IV. NO
V. NO
VI. NO
VII. NO
VIII. NO

Barb & Ron

 

[gigi]

Dear Hazel.....

1. Well....I have the name of a Social Worker. My recent attempts to contact her re mum have resulted in the Duty Officer being involved. Probably because my query is not about Eric...but I am carer for both...

2.Yes

3.I don't think so..

4.No...but earlier this year the CPN wanted to discharge Eric because he was "stable".....

5.No...I have an office hours phone number. (Mon-Fri..9-5)

6.No

7.I have regular visits..from the CPN at my own request.

8.No.

Good luck with this, Hazel..and thanks for what you do..

Can I add that our most useful person is the AS Volunteer Coordinater...who also liaises with the Mental Health team. I left a message about Eric on Friday..and she was on my doorstep at 10.30 thismorning. She's a star.

Love gigi xx

 

[Skye]

Thanks Barb and gigi!

It's good that so many people are finding their best support comes from AS.

Brilliant, but should it be like that?

 

[Margarita]

1. Yes

2. No

3 yes ( she is the social worker )

4 No

5 yes

6 Yes

7 No

8 Yes

 

[Skye]

Thanks, Maggie.

Any more? All input appreciated.