Dear All
Welcome to the update for The Carers’ Call to Action. We find ourselves responding to ever changing circumstances and time runs away! Hence the hope to produce an update every two months proved to be far too ambitious.
The range of meetings, events, pledges and initiatives locally and nationally highlight how important it is for us to have people who can spread the message of our shared vision locally. We will be working far more closely with local dementia action alliances and have resources available for meetings and events including leaflets, slide presentation and a concise overview.
We also now have a 20 point checklist for commissioners about what support we advise should be available to all carers of people with dementia.
Staffing:
· We now have funding for the Call to Action Co-ordinator role for 3 days a week until Sept 2014. Some funds are available from Sept 2014 until March 2015 but this budget will be reviewed depending on any further identified funds and demands of the role.
· We also have funding for a Carers’ Co-ordiantor role for three days up until July 7th. Again funds are available from July 2014 until March 2015 but this budget will be reviewed depending on any further identified funds and demands of the role.
· Joy Watkins has stepped down from the Carers’ Co-ordinator role and Louise Langham has been appointed. Louise has experience of caring for both parents living with dementia in many care settings. Thanks to receiving excellent support from her local authority, she was able to care for her mother for 10 years until she passed away at home in 2011. Louise relied heavily on her local Admiral Nurse Service to help rebuild her life after her caring role ended. She cared whilst working full time and part time in the Civil Service before taking early retirement to enable her to care full time. She is strategically involved locally ensuring support for family carers is prioritised, and also involved in regional and national projects, including the ‘Transforming dementia care for hospitals’ development programme with the RCN.
· Simon Kitchen will continue to support and promote CC2A in his role as well as exploring funds and fundraising opportunities.
· Sarah Tilsed and Renee Arceo provide core DAA, website and admin support.
Events:
· We have 8 further Great British Care Shows where we have a stall and presentation slot (London, Nottingham, York, Bath, Brighton, Haydock and Yarnfield). Please contact if you are able to attend.
· Barbara Pointon and Joy attended The Great British Care Show in Norwich. Barbara received a very positive response to her powerful presentation and 50% of attendees signed up to CC2A.
· We have a stall, presentation and open mic slots at The Alzheimer’s Show (May 16th & 17th) in London and Manchester (July 4th & 5th) Please contact if you are able to attend.
· Dementia Congress (Brighton November 10-12th)– we have been approached by Hawker Publications who are interested in working with us and DEEP towards an exciting new format for the opening plenary session involving people with dementia and their carers. There may well be other opportunities at congress. Rachel is meeting with Sue Benson (Hawker) and Rachael Litherland (Innovations in Dementia) to discuss on April 24th
· The Carers’ Call to Action event September 10th. The quarterly event scheduled for September 10th will now take place in the following week. Instead the space donated by LGA of venue and buffet lunch on September 10th will now be totally devoted to CC2A. Peter Watson has kindly agreed to chair. We will have a capacity of up to 90 people. We need to particularly focus on inviting people who will disseminate information and spread the word within their local area. This can include people from Health & Wellbeing Boards, CCGs, LGA, Healthwatch and Local DAA. We will also hope to invite two key figure e.g. Norman Lamb, Jon Rouse. We aim to present stories from carers, examples of services, our core message and examples of god practice. So for example we could present Triangle of Care and Rocky Road. We will be circulating a provisional plan for the day and very much welcome your thoughts and contributions.
· RCN event 20th May – Louise will be attending at RCN have kindly agreed to include our leaflet in their delegate pack free of charge. Rachel T has also said she will give CC2A a plug.
· If you are aware of any events we should be at then please do let us know. We also need you to think about any events you are presenting at and use the slides we have on the website www.dementiaaction.org.uk/carers
News:
· LGA event – One Year on Review of Health & Wellbeing Boards - CC2A has a perfect fit with the call for Health & Wellbeing Boards annual review to have local meaningful and responsive engagement with their communities. To strengthen local democratic accountability voice of patients and service users at Health and Wellbeing Boards is part of a bottom up movement. To re-design the face of health and social care integration and commissioning going forwards, with limited resources demands drawing on expert by experience and ownership of tough, pragmatic decisions in the community. Jon Rouse (Director General for Social Care, Local Government and Care Partnerships at The Department of Health) has highlighted priorities for 2014/2015, one of which is Carers – he recommends that Health and Wellbeing boards should be thinking to sign up to The Carers Call to Action!
· The Dementia Movement Public Health England and The Alzheimer’s Society will be launched in May. The movement will build on the Dementia Friends and Dementia Friendly Community Initiatives as well as addressing stigma and prevention.
· The Coalition for Collaborative Care. The Coalition is still in its early stages, and they want to continue to involve as many people as possible in developing it. They are working on how to involve people more widely and make sure everyone's interests and experience are used to the full. As part of this, they plan to bring people together at an event in June and they will be in touch soon with more details. We are signed up to this initiative and will be involved
· Care Bill – The Department of Health have produced some really useful fact sheets about the care bill but Elaine Edgar has kindly offered to produce a concise presentation for us. www.gov.uk/government/publications/the-care-bill-factsheets
· Better Care Fund will move care into the community away from hospitals – an even greater need for community practitioners to have training and access to expertise in dementia care. 151 plans have been submitted to The Better Care Fund and plans will be signed off by end of April to commence in 2015. The treasury have stated that this is a long term continuous plan and process to shift care from acute care into community sector.
· Laura Cook, a member of our Core Steering Group from The Alzheimer’s Society has been invited to join the RCGP Carers Stakeholder Working Group as they are working on a number of carers-related projects. It will be really very useful for the Carers’ Call to Action to be involved to feed details of the campaign into this working group. Some of the work going on in RCGP linking in with CC2A includes
1.DH funded project which aims to support staff in primary care: Developing an online information hub consisting of generic information and local signposting. However, this will initially focus on dementia and end of life care. It will be launched in July, piloted with 4 or 5 CCGs.
2.Recruiting 12 GP Carers Champions based over the country.GP Champions may be able to help disseminate the CC2A Carers Booklet.
3. Training workshops for commissioners in carer awareness
4.Building an evidence base for supporting carers showing that this helps to reduce hospital admissions (part of the new GP contract is that GPs will reduce hospital admissions).
5.They will be doing work in Carers Week or supporting the campaign from Carers UK in Carers Week.This may be an opportunity to publicize the CC2A?
· Dementia Awareness Week – May 18th – 24th – we will work with local DAAs who are attending numerous local DAA launch events across England during this week to include CC2A in their information/presentations and hand out CC2A leaflets
· Carers Awareness Week – We will be keeping an eye on what other carer’s initiatives are taking place – but will continue to network during June 8th – 14th
· There will be a review of National Dementia Declaration –We have already highlighted on behalf of the CC2A that the I supporting information to I statements are from the person with dementia’s perspective and do not necessarily support the needs of family carers. However Worcester University will be carrying out a survey for the DAA to review:
1: I have personal choice and control or influence over decisions about me
2. I know that services are designed around me and my needs
3. I have support that helps me live my life
4. I have the knowledge and know-how to get what I need
5. I live in an enabling and supportive environment where I feel valued and understood
6. I have a sense of belonging and of being a valued part of family, community and civic life
7. I know there is research going on which delivers a better life for me now and hope for the future
· There is a bit of a sign up lethargy or there are so many things to sign up to! But we have over 225 individual/organisations sign ups. We need to encourage more people to do so. Strength in numbers!
· Twitter is a great way of finding out about what is hot off the press as well as engaging with a much wider audience. We now have 767 followers – please remember to follow, re-tweet and use hash-tag #DAACC2A and our user name is @DAAcarers
· We will be working more closely with local DAA members to cascade and have a local voice this includes creating a power-point presentation and concise overview – see website
· We are creating a booklet for carers supporting the five aims with questions and solutions – we have delayed progress on the booklet as we feel that the format of 20 point checklist may be a better format. We will look at this further with a carers peer review process. We are aiming to launch the booklet at the event on September 10th.
· We have created A Commissioners 20 point guidance/checklist
· We will be collating examples of good practice to illustrate the 20 point checklist
· Please see the consultation on the development of Reading Well Books on Prescription list focused on dementia.www.readingagency.org.uk are keen to hear your views and would be very grateful if you could spare time to read the consultation paper and complete the linked survey athttps://www.surveymonkey.com/s/Y5MGGTPbyMonday 28 April 2014. Contact Debbie Hicks | Director of Research Tel: 0871 750 1203 | Mobile: 07500 010 683 for further information.
· See the full call to action at website www.dementiaaction.org.uk/carers
· See the full list of signatories at www.dementiaaction.org.uk/carers
Important Publications:
· A Good Life with Dementia - Red & Yellow Care
· Pain In People with Dementia A Silent Tragedy – Napp Pharmaceuticals
· Supporting employees who are caring for someone with dementia – Carers UK, Employers for Carers
· NHS England – Transforming Primary Care
· The Health & Wellbeing System Improvement Programme and Partnership Prospectus
· One Person, One Team, One System – report of the Independent Comission on Whole Person care for the Labour Party
· Putting Patients First – NHS England
And recent articles:
Forrester, LT. Maayan, N. Orrell, M. [et al] (2014).Aromatherapy for dementia.Cochrane Database Systematic Reviews. February 25th2014; Issue 2: No. CD003150.Full Text Link.
Zabalegui, A. Hamers, JP. Karlsson, S. [et al] (2014).Best practices interventions to improve quality of care of people with dementia living at home.Patient Education and Counseling. January 30th2014. [Epub ahead of print]. Review.
Nace, DA. Drinka, PJ. Crnich, CJ. (2014).Clinical uncertainties in the approach to long term care residents with possible urinary tract infection.Journal of the American Medical Directors Association. February 2014; 15(2): 133-9.
Peisah, C. Luxenberg, J. Liptzin, B. [et al] (2014).Deathbed wills: assessing testamentary capacity in the dying patient.International Psychogeriatrics. February 2014; 26(2): 209-16.
Potter, JM. Fernando, R. Humpel, N. (2013).Development and evaluation of the REACH (recognise end of life and care holistically) out in dementia toolkit.Australasian Journal on Ageing. December 2013; 32(4): 241-6.Full Text Link.
Fossey, J. Masson, S. Stafford, J. [et al] (2014).The disconnect between evidence and practice: a systematic review of person-centred interventions and training manuals for care home staff working with people with dementia.International Journal of Geriatric Psychiatry. February 18th2014. [Epub ahead of print].