An exploration of the UK unpaid carer's world

1

Professor Harrison explained his experiences as his wife’s carer and the difficulties and frustrations he has encountered. Professor Harrison particularly mentioned incidents regarding 

1. access to assessment tools, 
2. wanting to be actively involved in his wife care, 
3. frustrations regarding the limitations of the 2gether NHS Foundation Trust web site, 
4. timeliness of home care 
5. understanding individual’s and teams roles. 

2

It was noted that contact via Professor Harrison’s web site was not how 2gether Trust staff wanted to communicate with Professor Harrison regarding any concerns as it was felt to be problematic in promoting effective understanding any issues. 

Oooh, diddums!   

2g is the prime cause of the extent and detail of the numerous pages.  

1. Does 2g really think it could cope with flitting between dozens of emails each enclosing specific pages?  Add more for the updates.  
2. The website system goes beyond 2g reading the pages.  There's about a score of other readers; mostly healthcare professionals.  Of course - family and a few close friends have access.  
3. Nobody else has made similar comment.  Far from it.  Appreciation has been expressed for the way the case has been presented.  More important, however, is the sympathy from HCPs.  
4.  "An unnecessary tangled web of incompetence" as one healthcare professional put it.

However, if 2g would like to communicate in another way beyond this website, please make contact.

3

Jodie provided a range of information on areas that she felt maybe helpful including opportunities to participate in research.  Thank you.

4

Tim Wallin provided an overview of the service available for over 65’s and particularly dementia services in Herefordshire.

1. Secondary Care Services
2. Community Mental Health Teams 
3. Memory Assessment Service – provide assessment and diagnosis ....
4.  ... Community Dementia Nurse (working in collaboration with GP) annual review and short episodes of treatment/ intervention and signposting as required  Why not included in the Plan - letter 28 Sept plus more on how the team could work collaboratively with Professor and Mrs Harrison in future?  Why was this not included? "Review visit to be arranged with Sarah Harris (Community Dementia Nurse) with Jodie to review the plan collaboratively develop milestones and therapeutic activities with Professor & Mrs Harrison."  More on the HMS Letter 29 Sept 2015 page  here
5. There is also a new service and 2gether is working in partnership with Alzheimer’s Society.  When will it be announced?

        4    Community Dementia Nurse - no result  here 

        5   new service 2gether partnership Alzheimer’s Society - no result here

4.7

Never mind sending my contact details re seeking my views as a carer during the development stages of the web site. That would mean another reader of the entire set of pages.   I  hope that my participation in the website-content meetings can be arranged.  See foot of page here.

5

Actions agreed:

5.1  Mrs Harrison ' s care:

1. Jodie believed that a Care Plan had recently been sent to Professor and Mrs Harrison but this has not arrived. Jodie to resend.  - more here
2. Review visit to be arranged with Sarah Harris (Community Dementia Nurse) with Jodie to review the plan collaboratively develop milestones and therapeutic activities with Professor & Mrs Harrison. more here

5.2   Communication:

Sian to liaise with Communication Department regarding Professor Harrison’s experience of the web site including, 

5.2.1  

Highlight – lack of / difficult to access information on carer’s support groups

What about the urgency expressed for immediate connection to carer’s support groups?

5.2.2 

Lack of information about structure and care pathways to help people navigate to services and information

6

Professor Harrison’s well-being and his critical role in supporting his wife was discussed as well as options for support

1. GP generally the of hmm point of access 
2. Let’s Talk, self-referral - taking 1 and 3 as well, I raised the RC question in March.  Dr Lennane gave reasons for her not being available within the system 
3. Rosemary Carpenter’s role (CPN, Community Mental Health Team)  No mention at the meeting or since re whether the system can meet this request.  I request that 2g raises the matter directly with Dr Lennane and provides an overall recommendation as a result of readingthe entire set of 2g pages.  I expect a copy.
4. Carer Support Groups   See 5.2 1

8      Conclusion

1. Di Topham closed the meeting and thanked Professor Harrison and Rachel for attending. 
2. She apologised for any errors that had occurred in the past which had resulted in a breakdown in communication - more here
3. and hoped that the team could work collaboratively with Professor and Mrs Harrison in future. Possibly the only admittance that it had not done so before.  The next communication should please elaborate.

pagetop here   for pasting   30th September 2015 Meeting Home page here

                                        Notes to 2g 9 July 2015   (Homepage)  here