Dementia Improvement Group 10.09.2015
GB notes for Newsletter
Welcome and Introductions
NC asked all to introduce themselves. He then confirmed that he is standing down as clinical lead for
dementia and that this would be his last meeting.
The newsletter was agreed to be an accurate record of the last meeting.
NC had asked all commissioners to give him what they felt was their single most important
achievement between 2010 and 2015 (although most gave more than one)
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All cited improvements to community resources
Lots of work focused on primary care, with Swindon given special mention for losing its
secondary care focus and moving towards primary care
Memory assessment services – were evaluated last year and have really good outcomes
Intergenerational projects with schools (which are providing an improved community
resource)
Prescribing
Diagnosis rates – have improved in the South West as the region has always been a low
performer. The gap to the NHSE target has been closed and momentum is increasing. The
next data is due for release in October and the calculation method will for the first time be
based on the CFAS II study, which is anticipated will be more accurate and see a rise in
diagnosis rates.
NC closed by thanking all those who had contributed to the dementia agenda for their support and
congratulating them on all they had achieved.
Advance Care Planning in Gloucestershire
GK spoke about her experiences as the commissioning manager in Gloucestershire CCG and how
they implemented advanced care planning. GK explained that this is planning in advance the care
you would like to receive and that this work has strong links to the mental capacity act before
running through some of the key terms and issues.
GK shared the ACP booklet from Gloucestershire with the group, which has now been adapted by
other areas including Devon and Kernow. In Gloucestershire this has slotted into the Living Well
handbook that Helen Vaughan is leading on. GK pointed out that death and dying can often be the
elephant in the room and how helpful it can be to have these conversations event ahead of a
diagnosis.
The key point is that the booklet is patient held. It formalises ‘loose’ conversations that people may
have with friends or family, keeps everything in a single place and support communication
processes.
Gloucestershire have lots of resources on end of life care, ACP booklets have been put into GP
surgeries among other places, and there is an A-Z of resources on the network website.
What is the evidence base for ACP – does it work? There are important links to capacity for
dementia and it is best carried out before admission to nursing home and loss of function. GK will
share an article on ACP in dementia with the group and also recommended following
compassionindying.org.uk ‘Plan well, die well’. The key is around control as ACP supports patients
keeping control.
Dementia support workers could complete ACPs with patients, it doesn’t have to be GP led.
However GPs and healthcare professionals should always be made aware that you have completed it
and it is important for GPs to have copies of these and any lasting power of attorneys.
Advance Care Planning and Family Education Sessions in Torbay
EM is a specialist palliative care social worker at Rowcroft Hospice who has been working with
Devon Partnership Trust to see where they could add value to people with dementia. The service has
now been commissioned locally.
Following on from GK’s presentation, she doesn’t feel she needs to see any evidence but from her
own experience knows the value of ACP. Resistance has tended to be from healthcare professionals
rather than service users, and although EM had anxieties herself about how the group work aspect
would work they have been running sessions once a month for 2 and a half years and found people
very receptive.
These are difficult conversations for healthcare professionals rather than the patients. Emphasis
should not be on GPs, but there needs to be an upskilling of other staff like dementia advisors, and
needs to even go beyond healthcare.
EM shared details of a useful resource – a game developed in America for using in all sorts of
settings including ICU where patients may have limited communication. There are a number of
statements on cards and patients are asked to gravitate to those which are important to them.
Questions over mechanisms in place for ACP to follow patients, particularly if they are moving
around the country. Ideally they should come via the patient’s GP (once registered) but there can be
delays or patients may only be temporarily away from home.
Primary Care Dementia Practitioners
Cornwall started having conversations about what service was needed in 2010/11, as predicted
prevalence was expected to rise significantly by 2020. Some savings had been made from a
dementia ward and funding was available from the Prime Minister’s challenge that could then be
used for community resources.
Recruitment has been successful as there are high levels of interest in these posts. There are 15
PCDPs. All have undergone an intensive training programme and have a varied skillmix (MH nurses,
OTs, social workers, psychologists, RGNs) and are band 5 staff. All have training in end of life care.
PCDPs help patients and their families navigate the journey but are also very GP focused and
supportive and undertake lots of collaborative working. Each PCDP is attached to 3 or 4 GP practices,
but this is based on QOF data to ensure equitable workloads. They carry out the annual physical
health check and referrals into community and specialist services have reduced by 254. Feedback on
the service provided is very positive.
SE has been a PCDP since November 2014 and is attached to 3 GP practices. She runs the ‘Time to
Dance’ event which provides the notion of something to look forward to as well as having other
physical and social benefits. Dancing for dementia is research that shows the impact of movement
on dementia patients. They have run 3 to date and feedback from patients and carers has been very
positive after all of these.
Research opportunities are passed on to patients and they have good links to research nurses.
Dementia Risk Reduction
NC handed out copies of the Alzheimer’s Society Reducing your Risk of Dementia booklet. He
stressed that this will be an important topic, as PHE is launching an initiative in January 2016
focusing on social classes 3 4 and 5 and ages 45+
South West Clinical Network Dementia Lead
JF gave thanks to NC for all of his hard work as clinical lead and this was seconded by the group.
The hope is to replace NC and the network will be circulating an invitation for expressions of interest
in the post shortly. Anybody who would like further information should contact
gaylebridgman@nhs.net