An exploration of the UK unpaid carer's world

  
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Update 7 Nov


This page was written as prep for the meeting.  It is a very long page and 

it has been broken down into four, easier-to-handle pages starting here.



The Ross DMC set-up meeting                         Ross Vols here       Ross Home page here

Please advise amendments, additions etc - Contact.

Abbreviations
  • Advisory Board Liaison person - ABL - Deborah 
  • Volunteers - Vs
  • Alan F Harrison - AFH
Notes
  1. Recommended reading presumed to be read before the meeting

  2. Many items could carry a ? but that would be tiresome

  3. The Activity plan has not been written

  4. All Ross DMC pages are under construction

  5. The first discussion relating to the Ross DMC was in mid September when a start date of 2 Nov for a six-week pilot was agreed. In early October, the go-ahead for the present arrangements starting in January was given.   Early website pages intended for 2 Nov bear emphasis on DIY.  All present Ross webpages are intended not to include DIY in titles.  Please advise AFH if any have been missed.  

  6. Also please advise re typos, and links not working within Ross pages and the wider readership DIY pages.

Essentials

Must do:

We need to decide:

  1.  who will record Minutes

  2.  to agree the start date of 11 January

  3.  group composition

  4.      what expertise and resources are missing

  5.          subsequent action including Press Release?

  6.  the Press Release1 publication date

  7.  that visits to one or other DMCs are useful

  8.  an operational budget - see below

  9.  that all legal requirements are met

  10.  special roles

  11.             Deputy Project Leader  See 21 below

  12.                if appropriate at this stage 

  13.                       Chair, Secretary, Treasurer

  14.                       Group Leaders decided by groups

  15.   immediate registration with Herefordshire       Dementia Action Alliance here
            If 25 is undecided, the formation of a Core                   Team is advised


15  An operational budget for Year 1
  1. So far, £250 (donation) has been spent on equipment - 

  2. The writer has ordered a range of low-profile equipment amounting to £90 here. source 6.2.2.9

  3. Forecast for the year is a total of £600

  4. An idea of some of the costs can be seen at 6.2.5 First estimated running costs total for Year 1 here  £3700

  5. Allow £550 for unforeseen costs 

  6. Total £4250

  7. Add utilities, volunteer training, insurance, and other Christ Church costs.  An amount needs to be agreed by AB.

  8. Consider recommendations to AB re policy on participant charges 
While policy is being discussed but answers not urgent.  
  1. Will the DMC day begin with prayer? .. ..

  2. What is Christ Church doing about attracting more people (40 - 55) into the congregation?

  3. What is the view of the set-up meeting concerning attracting that age-group and the 20 - 40 age-group into the team?

  4. If the meeting decides to proceed, another group needs to be formed

  5. A set of to-be-public pages is being set up. here  

  6. A decision needs to be reached on 28 Oct.

Agenda

We can look at and make broad decisions:
  1. The team
  2. Recommended reading
  3. Our goals
  4. A typical day
  5. The draft Mission Statement
  6. Pre-publicity
  7. Publicity
  8. Pre-launch
  9. The launch
  10. First review
  11. The immediate future thereafter

1   The team

1  Start-up
  1. Coordinator - ABL
  2. Leader - AFH
  3. Deputy Leader
  4. Vs in sections arising from the meeting

2  When continuous funding is established in       the context of operating three days a week       and from 1000 to 1600
  1. Coordinator - ABL
  2. AFH as Leader
  3. DMC Manager  See 1.2.2 below
  4. Vs in sections
  5. AFH as V and other capacity as appropriate
  6. Deputy Leader - ditto


                 column under construction

Shall we begin with Intros.  You all know each other but I don't know many of you.  If you could say in which direction you may be heading, it will benefit the meeting. 
 
Any big-issue questions can be asked - no holds barred.

The broad grouping within Vs' choice includes:
  1. Front of house  
  2. Admin
  3. Communication - including publicity
  4. Resources 
  5. Finance
          There will be overlap.  

          Volunteers and daily routine here  

1   Front of House 

1A  On stage 
  1. Leading activities
  2. Supporting activities
  3. Participant support - Qs & As, referral 
  4. Meeting/greeting & departure
  5. Carer/caree log books
1B   Support
  1. Participant support - Qs & As, referral  
  2. Meeting/greeting & departure
  3. Premises comfort
  4. Carer/caree log books          

2   Admin
  1. Participant records
  2. Volunteer records
  3. Day by day records 
  4. Meeting Minutes

3   Communication 

3A  Publicity
  1. Press release 1 in the first instance
  2. Wider aspects including Internet later .. ..
  3. which includes this website until better provision is achieved
3B   Liaison with
  1. Age Concern Ross-on-Wye & District here
  2. Herefordshire Dementia Action Alliance here
  3. Crossroads Care Herefordshire here
  4. Age UK Herefordshire & Worcestershire here
  5. Herefordshire Carers Support here
  6. Herefordshire Disability United here
  7. Herefordshire Mind here
  8. Aspire Herefordshire here
  9. Healthwatch Herefordshire here
  10. Services for Independent Living here
  11. Ross Mental Health and Wellbeing Steering Group -  ABL and AFH are members 
  12. St Michael's Hospice here
  13. Ross-on-Wye Town Council here
  14. Community Psychiatric Nurses - CPNs
  15. Occupational Therapists - OTs
  16. District Nurses - DNs
  17. ART here
  18. Ross Gazette here
  19. Ross Residents' Handbook here  Consider this.
  20. Alzheimer's Society here
  21. Association of Dementia Studies here via  To discuss why small text used.

3C   Other
  1. Routine correspondence 
  2. Promoting Ross DMC to be public Home page 

4   Resources  

4A   People
  1. Training
  2. Validation
  3. Maintain the flow of activity leaders
  4.                                          volunteers as needed
  5. 3B lists another type of resource
  6. Other networking

4B   Equipment
  1. Seek definition re Christ Church equipment which can be used
  2. Records
  3. Storage
  4. DIY - liaison with 1A

4C   Premises
  1. Optimising 
  2. Back-up premises
  3. Health & Safety 
  4. Signage
  5.  Parking


5   Finance
  1. Daily finance records
  2. Petty cash
  3. Banking
  4. Funding

21  Deputy Project Leader 

  1. The DPL assumes responsibility for all aspects of the DMC operation in the event of AFH's absence on any day of operation 

  2. Early discussion with ABL and AFH 

  3. An early visit to A) the Leominster DMC or B) Droitwich DMC advised.  AFH is likely to be at A, and will accompany if B is chosen.

  4. The DPL is advised to become a Dementia Champion and to run a dementia talk for the rest of the team

  5. AFH recommends that he chairs the Front of House group

  6.                                    DPL chairs the Communication group


-------------------------------------------

 1.2.2  DMC Manager   under construction
  1. The operational budget of £4250 has been calculated within the context of the absence of all the factors involved.  The two DMCs in operation cannot be expected to release information due to being within a formal research project which does not report until February.  We will use the figure £6000.

  2. It is known that both DMCs cost £80,000 per annum each to operate, with a manager and two staff, three days per week. 

  3. The first time in-depth discussion takes place about needing a manager is when the first review takes place, say, after three months.  It would be in the context of operating on three days per  week from 1000 to 1600 (unless there are real reasons for status quo re hours per day which include participant and V feedback).  Add an hour at each end = 3 times 8 hours.  Add six hours admin = 30 hours per week.  Allow for holiday cover unless the DMC closes for two weeks.

  4. Allowing, say, £17,000 for our manager and £6000 costs, funding bids would need to be based on £23k.  One reason for the £80k figure is the research aspect of the project.  Even if it continues, the Ross DMC need not buy into it.  It is best not to.

  5. Funding bids based on £6k stand a better chance, obviously.  The difficulty is that like with like is not being compared.  The review after three months needs to be thorough.

  6. If decision-making as to which route to take is difficult, we are not talking about next week.  There's plenty of time to consider another factor.  We will assume the operation has been running successfully with volunteers with enough money to support paying for external help and the equipment, for three months.  Funding applications are made and, say, three months later, a manager appears on the scene.  

  7. After six months of settled routine, how are those who have been propelling the ship going to feel?  Volunteers will find themselves out on a yard-arm. They have been the keel of the project only to find themselves unable to influence the rudder.  How much of that will spray down to the participants?   If needed, the volunteers put their case to the Advisory Board via the AB Liaison person, within the three month review.


  8. £6000 to run one day a week does not mean £18000 for three days.  Let's settle on £15000.  Let's agree to review the situation after three months from doors open.  By then, we will know much more about operational costs.  Expect nothing re the first item above.  



2   Recommended reading

One purpose of the Cook's tour is to collect morsels for a later meal.  Savour what interests you for diet decisions.  1.1.4 aims to collect Vs of the same taste so that the wide range of tasks before us can be digested by like-minded and topic-interested dining companions spread across different tables.

It is recognised that hunger may not be widespread. Not everyone present is a V.  For them, time-availability prevails.

  1. Starter's orders here

  2. Recommended bare-bones text here* and Leominster video 
  3.   
  4. Dementia Meeting Centres - synopsis  - here

  5. Preamble and Introduction here

  6. First Press Release  here
views invited re the header graphic and resultant page-comment.  You may come to it at the early stage of your interaction with the pages.  Others may encounter it as the umpteenth page within a long session and as lighter relief.



3   Our goals

3.1

This extract is based on the list here with added italisised text, substituted small print, and ..... editing.

  1. Set up, promote, establish, organise and facilitate a DMC in Ross

  2. Include meaningful activities which offer therapeutic  individual-orientated and group-benefit  possibilities

  3. Co-operate in the creation of a stimulating, cosy  comfortable and safe atmosphere to stimulate members to engage in therapeutic, recreational and social activities relevant to their individual and group needs

  4.  Check the development of participants with regard to the goals formulated in the activity plan* ...  Note 3 above.  See Activities here  and Activities - purchases and DIY  here 

  5. the Activity plan will appear in Activities here  

  6. Ensure that the group is appropriately organised and arrangements communicated with attendees, . members, staff, volunteers and facilitators** and that the relevant health & safety checks and risk assessments have been completed.

  7. ** Recruit and support specialist facilitator(s) if applicable, for example for a skill or interest-based activity group. here

  8. If more info is required, 21 aspects of these items are here

  9. By using this extract, we are in accordance with the main DMC project.  However, nothing like the extract appears here or elsewhere as far as can be determined.

3.2  Start the planning of raising funds

3.3  V  training
  1. Dementia awareness - At least one of you will need the knowledge 
                                       of a Dementia Champion  here 1.5.4.1                    .... ...

  2.  . . . who will present it to the rest of the team

  3. Meanwhile, there is part of the presentation here.  

  4. All Vs in contact with carees will need, at least, awareness training re, for example, lifting




4   A typical day

         Timing and content        
  1. Start and finish are vital.  The rest of the day needs some flexibility.

  2. Arrival  of participants from 1040  - beverage available

  3. The time has been announced (in paperwork before arrival*) as 1100 and starts promptly at 1105 

  4. It ends promptly at 1445 due to members who are to be collected at 1500

  5. 1105 to 1120 - Phones  off*,  beverage and details re lunch         * to discuss

  6. 1120 to 1200 - first activity

  7. 1200 to 1220 - toilet break  -  beverage

  8. 1220 to 1300 - second activity - it could be making lunch

  9. 1300 to 1400 - lunch including clearing, washing up and WC

  10. 1400 to 1445 - third activity - probably sedentary - conclude with diary/log* and outline for next week

  11. 1445                 - hats and coats - -  reminder of programme for the next week

  12. 1500 - departure

  13. 1515 - 1545 - evaluation discussion
      
* 
5 & 19 - the plan is to provide carers and independent carees**  with an A5 binder  (at their cost?) 

See 15  An operational budget for Year 1, in the left column above -  Item 15 - Consider recommendations to AB re policy on participant charges 



**  8.5 here

from 3.1 here





5   The draft Mission Statement

Intro

With so many non-Ross pages promoting DIY, the initial question relates to the title - Ross DMC or Ross DIY DMC.? 

This needs careful thought. 5.1 doesn't depend on including DIY in the title.

5.2 does so depend, but A) early readers might wonder what has happened to it, and B) - all readers might gain better understanding of the issues involved

Assuming for the moment, we decide to leave out DIY in the title, the FAQs page needs conversion on a fresh page within any set of pages aimed at potential Ross DMC participants.  FAQs page here




5.1    The Ross DMC is committed to: 
  1. Providing a stimulating, exciting and innovative new service for people with mild or moderate dementia living in Ross and surrounding areas.  The new service is designed to provide support to them, their carers and families, and is designed to offer an enjoyable, flexible and adaptive programme.

  2. Improving local dementia care provision by giving participants with dementia and their participant carers real choice, whilst promoting and sustaining as much independence and control over their lives as possible 

  3. Demonstrating that real choice means that the DMC provides a service based on its participants determining what happens from day to day

  4. Ensuring that participants are informed of and can make choices from a full range of therapeutic opportunities designed to help reduce the burden of dementia or the burden of caring for someone suffering dementia
  5.  
  6. Publicising the essential difference between a daycare centre and a DMC in that carers participate in the wider aspects of the care process, hitherto being a one-to-one activity at home.
       
       5.7 - therapeutic v beneficial             opportunities v options

       
       Consider adding:

    10
  • A diagnosis of dementia can be frightening for those affected by the condition.  Both carers and carees, as well as independent dementia sufferers, can feel entirely alone.  The Ross DMC eliminates that worrying element from the situation.  Joining other people with the same needs and hopes brings companionship and relief within the new process of working within an environment designed to give the best outcome for all concerned.  Carers are equally important and benefit as much as carees and independent sufferers.  
    11
  • As well as providing personalised support, activities and services to carees and carers, there will be bi-monthly information sessions open to the public, supporting Ross in becoming a dementia friendly community and raising awareness of the ailment.
  
    12
  • The Ross Dementia Meeting Centre is an innovative example of good practice where visiting contributors  and dedicated volunteers combine with carers to provide comprehensive, cost-effective and easy to access support; enabling those with dementia to live longer independently with a better quality of life and delayed entry into residential care.


5.2    Text which was thought relevant early in the project development

  1. Continuing as the only practical form of DMC within a climate of dwindling financial support for local mental healthcare  this demands a summary of the normal way of creating a DMC but extends the MS

  2. Bringing a shorter lead-time to the creation of new DMCs by delaying some of the preliminaries 

  3. The continuity of  the too-few UK DMCs and the creation of more (this demands a summary of the two)

  4. 5.1 et seq




6    Pre-publicity


6.1     Informal pre-publicity
  1. Round-up of who has said what to whom

  2. Within the Christ Church congregation

  3.           Churches Together in Ross-on-Wye & District here*
  4.  
  5. Produce an A5 leaflet introducing what we are doing for 3, 5 & 9 - soon?

  6. Rotary Club here and similar
  7.  
  8. I need the name of the best person at Pendeen to speak to. Have asked Dr L at Alton Street Surgery.

  9. Networking re looking for activities people not poets yet and someone to advise on computing and social media.  The meeting will explore what other help needed. 
  10.  
  11. Networking re finding back-up premises in the event of a greater call for a Wednesday

  12. Decision re others to be informed
       *Will it publish anything before publicity appears?


6.2    Formal pre-publicity on the Internet
  1. Info on the Christ Church website?

  2. A new set of pages on this website?

  3. A link from the Christ Church website to ?

  4.                         Churches Together website?

  5.  A special Ross DMC website made by CC, CT?

  6. Is Ross Community Church here in CT?

  7. Links from Dementia Friendly parishes here

  8. Use social media.  Don't ask me - therein lies one of my many IT weak points.

6.3  Wider aspects while I think of them.  Not related to the heading.

If time, or for the future, can we discuss - The Church and the Carer.  Ask this question on the Christ Church website?  -  Are you a carer?            . . . . 

One interested person could borrow this book - The Selfish Pig's Guide to Caring  here  and pass it around.  




6.3  The Gazette
  1.  Once our PR dates are settled, I propose going in to talk to Jo Scrivin.  If two or three Vs keen to be involved in publicity emerge from the 28 Oct meeting, one could come with me.
  2.   
  3. Jo will appreciate plenty of notice. I hope for a whole page   - -  a right-hand page.

  4. What do readers think of a sponsored page?  Jo circulates a summary to businesses and orgs which pay for adverts as a frame for the text and pics.  The adverts, as is well known, will wish the Ross DMC every success.  

  5. What do readers think of a Gazette exclusive?  Not too impressed with the Hereford Times.  Will explain at the meeting as appropriate.



6.4  Carers 

1    Preamble
  1. I'd like to know who the carers and carees are if Dr L is to "supply" them all.  If Pendeen is on board, a more involved situation arises.  

  2. If we don't muster, say eight carer/caree couples and four independent carees  . .  we'll be looking for more via Press Release 1 13 here

  3. Given for the moment that they materialise, I hope Dr L and I will meet the carers and independent carees as a group as soon as is practically possible.

  4. Ideally at Christ Church.
       6.4.1.3 - 8 carer couples etc - leads to further complications if Gazette readers want to be included.  Do we             create the DMC provision on a second day per week?  Big question.


2    Email and letter here  hidden page





7   Publicity
  1. First Press Release  here

  2. Decide upon a small group to finalise it.



8   Pre-launch
  1. Create a plan now to be refined as outcome of 7.1 is known


9  The launch

9.1   Fanfare
  1. Open without a fanfare which would interfere with participants settling in.

  2. That might happen after, say, in the third week. Hmm. 

  3. Why not leave it to when a significant breakthrough is achieved re funding?  I don't mean the Methodist Church as first-funder call.  However, if it happens and wants publicity, we're happy to oblige.

  4. Consider the fanfare  here 

  5. It needs to be said that I wrote to the council months ago about the project and requested use of one of its meeting rooms for two public meetings.  Two months after that, I said rooms not needed but still hoped for interest in the project.  No answer to either.  Item 3 involving the Mayor?  Hmm again.  

  6. When you have found your copy of the Ross Town Council Newsletter - Sept 2016 , see Grants on p6.  Delete the Hmms above.

9.2   Operation
  1. See  3.3  Day 1 here

  2. Ideally, . . .one of our vols will see to lunch on the first day.   3.3.11 



10  First review
  1. This should happen after, say, three months.

  2. Create a plan soon to be refined when enacted.



11  The immediate future thereafter
  1. Continue funding applications in earnest

  2. There is a page on a Business Plan under construction.


pagetop       The Ross DMC set-up meeting here

                          Ross Vols here       Ross Home page here