An exploration of the UK unpaid carer's world

Meeting - 30 Sept 2015 - notes prior to                                hidden page                 

23 09 2015  - AFH current stress level    No.  1.23  here   

The purpose of the this page and its subsequent page  2g Summary is to ask and receive answers to a series of questions and comment before the meeting so that it can concentrate on how the author will be involved working positively with 2g . . . 

  1. in his wife's treatment
  2. in the production of 2g website text and hard-copy material etc that can be used by informal/unpaid carers within the Triangle of Care model and other relevant concepts and techniques.
Item 1 may well be the only topic to receive attention within an hour, but it can set the scene for 2.


Preliminary reading - 2g Summary here      23 09 2015  - AFH current stress level    No. 1.23  here     


    Contents 

    Preamble - The essential questions are at viii

  1. The Dementia Triangle of Care
  2. Documents
  3. Self help group
  4. Wishy-washy Herefordshire
  5. 2g will need to confirm
  6. Regards


Dear Mrs T 


Preamble

i
The meeting will depend on use of my website via a projector and in that respect, I have booked the meeting room at the Royal Hotel from 2.30 to 4.30 with tea for five at 3.30.  Looking forward to the start at 3.00.

ii
The cost is £60 + 5 x £1.99.  Please settle the bill after the meeting.

iii
Sending this page via email on 20 Sept gives 2g a good chance to collect requested items and confirm at least  two working days before the meeting that they will be brought to the meeting.

iv
The crucial page before the meeting is the  Dementia Triangle of Care page - later.
    
v
You will need to confirm at least  two working days before the meeting  that 2g accepts the text on that which is highlighted in various ways in the context of my having a significant role in my wife's care.  There is much more text in that context elsewhere but this will do to start with.

vi
You will need to confirm at least  two working days before the meeting that 2g agrees to explain at the meeting why a formal reply was left so long. I want to know why a decision was made when all this started in early August, to prevent communication with me.  Initially, I aimed to engage AD.  Clearly, a nurse cannot take such a decision. 

vii
The essential description if unread,  is on the 2g Summary page here
 
viii
Comment

The organizational culture  within a company is a matter for its Board.  2g is answerable to the public at large and the author is entitled to proper and correct treatment. 
  
Organizational culture is a system of shared assumptions, values and beliefs that governs how people in an organization behave. The culture of an organization breeds an organizational climate, which represents how members of an organization experience that organization's culture. 

source here under    Organisation climate - Wikipedia, the free encyclopedia     and left as such to enable the reader to explore easily other aspects

Wife and I have been to a disability hotel - the Glamorgan Holiday Hotel here .  I have been so impressed with it, an organisational culture review is under discussion before publishing it here.   It gives 2g a target.

There is a  webpage - 2g must improve  - which can be annotated substantially with comment on its way of operation if 2g continues as it has up to responding to webpage pressure for this meeting.

  
ix
The essential questions are these:

Who made the decisions in vii/a?
Why?

Be sure that if no satisfactory answer is forthcoming, I will pursue 2g using the Freedom of Information procedure here.

x
Another unacknowledged stipulation refers to "It is 2g policy to send all such letters to the caree irrespective of ability to comprehend technical and medical terms used within them."

Please confirm that any letters 
  1. within my wife's interaction with 2g will be addressed to me.
  2. to the surgery are addressed to Dr L
as detailed here.


xi
If all the requests have been met and all questions answered to my satisfaction at least  two working days before the meeting, there can be brief discussion before moving on to how I can work positively with 2g.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

1   The Dementia Triangle of Care
1.1
The Dementia Triangle of Care page includes this statement by Thea Stein, Chief Executive, Carers Trust.  "Success in achieving change depends upon staff becoming willing ‘champions’ for better partnership working and being able to challenge practice that excludes carers."  2g has attempted to exclude me, up to the threat of naming and shaming. [[ here  also 11/b2 here ]] That clearly is unacceptable.  The Triangle page includes numerous statements etc to support the quotation. 

1.2
Regarding the many requests that  I will be involved per the Dementia Triangle, please outline how this will operate.  Include quotations and source of text within the 2g website.  

1.3
Assuming that such text is absent, please confirm at least  two working days before the meeting that we will work together to produce suitable text etc to advise informal/unpaid  carers how they can benefit from and be a partner with 2gether working towards the best outcome for their caree.

1.4
There is no Home page link to the 2g set of pages on the Triangle page as it is a public page.  Another public page of relevance is the Dementia Herefordshire Home page here.  In the section dealing with you is 

"Patients are provided with a Case Register

The last line does not come within the author's experience."  Please bring a Case Register with you or send it.  

Above that is " CrISP 1 programmes not explained - see here  more  Herefordshire"  More info please.


2   Documents

2.1  

I note that JT "has spoken with CB and located the documents you requested. Chris will deliver them to me and I will bring them with me when we meet.".  It has taken weeks to receive a response re CB, never mind over a year ago. Why no reply re other documents apart from unacceptably going through a third party - Adult Wellbeing?    2.2.2


2.2.1

I note that nothing has been done about these other requests. This is hardly a good start.  On the 2g Home page is this in large red text: 

C1.3   Request

Lists of the “What year is it?” questions and similar are just one approach I assume are used at 2g and I ask to be given as much as possible to help caree.  Also, please supply record sheets so that performance can be tracked and fed to you, CPNs, in GP discussion, perhaps DNs etc.  source here   reminder here 

[[ To AD } This paragraph is also highly significant within normal expectations relating to interaction. Assuming that you consider yourself an HCP - healthcare professional, you have some explanation to make as to why you did not reply.  


2.2.2

I want to know why a decision was made which resulted in Miss SP of Adult Wellbeing sending me this text:

  "In my discussion with SH she has explained to me that she is unable to provide you with a copy of the tests that they undertake, she explained that they would not advise that your wife is tested regularly as this could cause her increased anxiety.  SH will be in touch with you to arrange a visit.  The frequency of these visits will be approximately 12 monthly. 
 
source 12 iv here  My reply 12 iii et seq.  See also Update 14 Aug here.         See also viii above.

2.3.1

Why is it that when relating the 2g problem very briefly to our GP, he could print the 6CIT test in a few seconds?  Why is it that if he can see the sense of me using docs of that sort, you can't?  Why did you ask Adult Wellbeing to tell me it would be too distressing for my wife?   2.2.2  above.    See also viii above.


2.3.2

The 2g Caree assessment 17 August 2015 here doesn't need a higher-degree graduate to administer.  Even a first year BTEC student could have carried it out.  In fact, if any of these tests are carried out bit by bit, it would be less distressing than within the time-precious allocation on the day.  Recap my comment from 12 iii to the end of 12 on the Dear me page here.

 

3   Self help group

" I need a self help group pronto."  13 August here  2.1   

No response.  What kind of service(?) do you think you provide?   See viii above.  There's too many what-ifs? in the situation to even start exploring.  

My stress level is high and is evidenced by the page here.


This Gloucester group may have a local equivalent.  Please advise.

Positive Caring Programme

A series of six sessions that provide an opportunity for people who look after a friend, relative or

neighbour to meet with others in similar circumstances to gain and share information knowledge

and skills to help in their caring situation. 01452 500885 or 426254   source


Your Circle

A website for people living in Gloucestershire that can link people with the services and support

they may need to help them live an independent life for as long as possible. The site contains

information on local clubs, financial advice, support groups, home safety, drop in centre, activities

groups to support health and wellbeing and more.   more    HFDS? including drop-in centre?



Community Meals: This can be set up straight away and is not means tested. Delivered
hot meals currently cost £ 3.50 each and a direct debit can be set up for payment.     source               HFDS? 


 
4   Wishy-washy Herefordshire

4.1
I have read no tool-kit  and very little action-orientated HFDS official text relating to dementia and a lot has been read.  

4.2
Widening the search reveals the only concrete text:

Hampshire County Council/ Innovations in Dementia CIC/ Local Government Association South West Dementia Partnership  
Dementia Capable Communities Toolkit: an approach for involving people with Dementia in setting priorities for a dementia friendly community. Toolkit also provides briefing notes and checklists for businesses, help packs for customer facing staff, ‘kitemarks’ for dementia friendly facilities

 source   People with Dementia and their Carers  - Strategy and Implementation Plan 2013-2015   
              p7  here

Question:   Is this within any 2g Action Plan?                

However, it also says "What Works Resource Pack: Involving people with dementia to undertake mystery shopping."
My wife is at the Onset Dementia stage and she is fortunate compared with numerous other sufferers.  She could  not participate alone in mystery shopping any more than she could fly to the moon in her powered wheelchair.  Assuming this is a group activity, there are social benefits.  Not well described.

Context of the above extracts - Dementia Herefordshire Home page here 

4.3
Let us cut through the crop of wishy-washy Herefordshire text and produce material that can be used by informal/unpaid carers.

4.4

Let there be public recognition for unpaid/informal carers who respond to new promotional text on the 2gether website.

4.5

It certainly needs it.  Examine this URL 

 http://www.2gether.nhs.uk/treatments-and-therapies---information-for-carers  

with this result   

The page you are looking for does not exist or is temporarily unavailable

Below is a list of pages that may be what you were looking for.

Sorry there are no results matching your search



5  2g will need to confirm that 
  1. I will be involved per the Dementia Triangle and other text within the relevant pages

  3. Please outline how this will operate.  An email should arrive at least  two working days before the meeting

  5. 2gether agrees to explain at least  two working days before the meeting, its response to this page

  7. 2gether agrees to explain at least  two working days before the meeting why a formal reply was left so long

  9. 2gether agrees to explain at least  two working days before the meeting why requested forms etc were not supplied when requested

  11. Relevant to " I need a self help group pronto." 3 above and 13 August here  2.1,   2g agrees to explain at least  two working days before the meeting why nothing was done and what is to be done

  13.  Please confirm at least  two working days before the meeting that we will work together to produce suitable text etc on the 2g website to advise informal/unpaid  carers how they can benefit from and be a partner with 2gether working towards the best outcome for their caree.

  15. The cost of the meeting is £60 + 5 x £1.99.  Please confirm at least  two working days before the meeting that 2g will settle the bill after the meeting.
two working days before the meeting otherwise it will be postponed until .....  

6  Regards

Let us cut through the crop of politically correct letter-endings.  I find it very hard to send best wishes, least of all regards to a set of incompetent, don't get it  individuals.  I refuse to acknowledge them as healthcare professionals.

However, I have demonstrated that I will work towards improving the situation between us and working to improve the service provided.  Let 2g prove it is populated by healthcare professionals. 

Yours sincerely will fit my sentiments. 

Alan Harrison

pagetop here   for pasting   Meeting - 30 Sept 2015 - notes prior to  here                                      all  hidden pages 
                                      Preliminary reading - 2g Summary here
                                      AFH current stress level here                                  

                                      30th September 2015 Meeting Home page  here