Meeting:
Dementia Advisory Group
Date:
26 January 2016
Time:
14:00
Venue:
Evolve Business Centre, Houghton-le-Spring, DH4 5QY
AGENDA
1.
INTRODUCTION
1.1 Welcome and Apologies
Lead
Enclosure
5
1.2 Declaration of Interest
1.3 Minutes from last meeting
2.
5
Enc 1
AGENDA ITEMS
2.0 Dementia and Learning Disabilities
2.1 Gateshead Vanguard
JT (15)
KF(5)
2.2 Revised Terms of Reference (All comments have been
incorporated)
10
Enc 2
2.3 Updated work plan (as there is little time to discuss the
whole document, members asked to raise any specific
questions they have)
10
Enc 3
2.4
20
Draft Dementia Mapping Report
2.5 Patient and Public Engagement (Members are asked
to be aware that we have started the process of
identifying a patient and/or carer to sit on the group
and to discuss implications for the way the group runs,
language used, etc)
20
2.6 Update on Pathways Workshop (19th Jan 2016)
5
2.7 Well Pathway for Dementia update (Fingertips)
http://www.yhpho.org.uk/resource/view.aspx?RID=222
222
2.8 Discuss PHE Document (All were asked to look at
leaflet and think about how it can be distributed to their
local communities, latest version attached)
2.9 Mindmate App (via NHS Innovations North we’ve been
asked if there is a Dementia expert with an interest in
5
5
5
To be
tabled
Enc 4
the use of technology to assist patients and their carers
who would like to be involved ) http://www.mindmateapp.com/.
3.0 End of Life update
3.
STANDING ITEMS
3.1 Any Other Business
3.2 Next Meeting
4.
5
MEETING CLOSE
5
Meeting
Dementia Advisory Group
Date
8 September 2015
Time
0930
Venue
Evolve Business Centre
Present
Name
Initials
Louise Allan, Clinical Lead, NESCN
Johannes Dalhuijsen, Clinical Lead, NESCN
Jo Phillipson, Network Delivery Team Manager, NESCN
David Newman, Network Delivery Team Lead, NESCN
Suzanne Thompson, Network Manager, NESCN
Debbie Smith, Dementia Strategy Imp Manager, TEWV
Sharon Tufnell, Service Delivery Manager, TEWV
Jill Smith, Strategic Workforce Development Manager, HENE
Susan Meins, Commissioning Manager, North Tyneside Council
Catherine Butcher, Dementia Hub Coordinator, NEDA
Julie Daneshyar, Alcohol & Dementia Lead, PHE
Hazel Cuthbertson, Regional Ops Manager, Alzheimer’s Society
Becky Haynes, Commissioning & Dev Support, North Durham
CCG
Anne Bell, Consultant Psychiatrist, TEWV
Karen Nielsen, GP Lead, Newcastle / Gateshead CCG
Judith Gibson, Modern Matron, Gateshead Health NHS FT
LA
JD
JP
DN
ST
DS
ST
JS
SM
CB
JDn
HC
BH
Name:
Initials
Frances Naylor, GP Lead, Northumberland CCG
Kate Brundle, Head of Commissioning, Northumberland CCG
FN
KB
Apologies:
AB
KN
JG
MINUTES
1.
INTRODUCTION
Lead
Enclosure
1.1 Welcome and Apologies
LA welcomed all to the meeting and explained the
background to the group.
1.2 Declaration of Interest
None declared.
2.
AGENDA ITEMS
2.1 Terms of reference
1
The group reviewed the Terms of Reference and
membership.
To be added to the membership:
• Gateshead Health NHS FT
• Northumbria Healthcare NHS FT
• Cumbria Partnership NHS FT
• Third Sector representation
• Alzheimer’s Society
• Age UK
• HENE and all other stakeholders to be added
• NEDA
• AHSN
• Patient & carer representation
(members to be aware of differing boundaries)
KN & BH to provide links to CCGs.
CB spoke about NEDA and the potential of an online
forum via the various collaboratives. A mapping
process is being carried out and CB will update the
group on this at the next meeting. NEDA are also
working on PPI involvement and Newcastle,
Sunderland and Northumberland Carers are all keen to
be involved. LA advocated the use of focus groups by
way of building relationships with patients & carers.
DN
KN / BH
CB
ST spoke about the MHDNC Involving People Forum
and how this feeds into the MHDNC Steering Group.
LA felt that neurology had a strong representation on
this group. KN highlighted the difficulty in getting
independent views from people with dementia as
opposed to their carers.
HC updated the group on the Service User Review
Panels that are currently being developed in the Tees
region. Agenda items are planned in advance.
Three meetings a year was agreed.
Purpose
PPI to be added.
Priorities identified nationally via the NCD.
Work towards integration of health and social care
services – regular agenda item for updating.
Review local vanguard initiatives.
AL
DN
2
Facilitate and promote integrated working practices.
Revised TORs to be sent to the group for review,
comments back in 3 weeks.
DN / AL
2.2 Review work plan & progress so far
The group reviewed the work plan.
DN will update the group on the mapping project at the
next meeting.
DN
CQUINs – ST to liaise with Anne Greenley from NECS
and provide an update at the next meeting. LA to
contact Acute Care Leads.
ST
LA
ST explained that the SCN budget has been cut,
therefore limiting the funding available for the
Dementia Standards Project (via Delphi) project. This
will be explored further with other SCNs.
The group discussed other possible avenues to
explore. DN to draft an explanation of this project to
distribute to the group for them to use to explain to
others to scope for potential involvement.
DN
DN
AB updated the group on the memory clinics promoting
DN
Deciding Right across Teesside. DN to help identify
people for a potential Task and Finish group around
levers for introducing Deciding Right.
LA put forward the idea of communicating with people
through bus pass distribution.
HENE have funded a project called Patient Voices
using videos of patient experiences. It is not ready yet
but it is in process. Hopefully it will be piloted in the
New Year.
2.3 PHE Dementia Risk Reduction National Document
JDn gave a presentation to the group on the PHE
Dementia Risk Reduction National Document.
All asked to look at it and think about how it can be
distributed to their local communities.
Enc 1
2.4 Cross Sector Pathway Group
This group looks at a regional pathway. Further
feedback at the next meeting.
3
2.5 Dementia Diagnosis in Acute Settings (Potential
Acute Care Providers Group)
Representation from all providers to be invited to next
meeting.
DN
2.6 Potential for Mental Health Providers Group
LA asked the group if this would be useful for the
network to have a group for engaging specifically with
MH providers on a specific workplan. To be discussed
further at next meeting.
3.
DN
STANDING ITEMS
3.1 Any Other Business
Gateshead Health has advertised for two dementia
nurse specialists.
Newcastle has also advertised for two dementia nurse
specialists. Looking at a dementia navigator, working
with Alzheimer’s Society.
Tees, Esk & Wear Valley have produced a draft
dementia strategy and this can be obtained from
Debbie Smith.
3.2 Next meeting
26 January 2016, 2-4pm, Evolve Business Centre.
4.
MEETING CLOSE
4
Northern England Dementia Advisory Group
Northern England Strategic Clinical Network (NESCN)
TERMS OF REFERENCE
Chairperson:
Membership:
Dr Louise Allan
NESCN Clinical Lead
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
CCG GP leads for Dementia
CCG commissioning leads for Dementia
TEWV mental health trust
NTW mental health trust
Gateshead Health NHS FT (memory service)
Northumbria Healthcare NHS FT (memory service)
Cumbria Partnership NHS FT
Representatives from acute hospitals
Representative from NECS
Public Health England
Health Education North East
Local Authority Dementia Leads
Alzheimer’s Society
Age UK
North East Dementia Alliance
Academic Health Science Network
NESCN Dementia Lead
Public and patient involvement to be achieved via member links to
local collaboratives, charities, alliances, forums and local carers
organisations.
Frequency of
Meetings:
There will be three meetings per year or more often if the Chair
deems this necessary.
Quorum:
The quorum for the Forums meetings is a minimum of one-third of
the total number of members plus one.
Admin:
Action Points ☐
Purpose:
•
•
•
Minutes ☒
To advise on all aspects of dementia through the knowledge
and expertise of the group members and provide a network
response to pertinent issues.
To spearhead and effect change across the network region
by partnership working.
To identify variation in health related outcomes for people
with Dementia within the network region by making best use
of information available such as soft intelligence, National
Audits, national policy, and the priorities identified by the
National Clinical Director.
•
To reduce variation in health related outcomes for people
with Dementia across primary and secondary care through
collaborative working within the network region. Setting up
specific task to finish subgroups as and when necessary.
• To standardise clinical guidance and pathways to ensure
consistency in care for all Dementia patients and carers
across the network region.
• To take part in network wide audits and report on progress
and findings within the NESCN annual report.
• To discuss upcoming national audits, national funding
opportunities and pilot programmes to make
recommendations for participation to the wider network
members.
• To create and maintain an active work programme
document that will be reviewed at each meeting to measure
progress.
• To act as an advisory body on all Dementia related issues
and respond in a timely manner to other network advisory
groups, steering groups and the Senate.
• To work with other agencies and organisations as and when
needed and to co-opt other members onto the group when
appropriate.
• To facilitate and promote integrated working.
• To review methods of integration and share across the
network including interfacing with social care and third sector
organisations.
• To ensure that new initiatives such as NHS Vanguard sites
consider dementia in their planning and implementation.
Chair will be for 2 years with an option to extend for a further 2
years (maximum 4 years term of office).
Accountability:
Accountable to Northern England Mental Health, Dementia &
Neurological Conditions Strategic Clinical Network.
Ownership of
Group Projects and
Initiatives:
All projects, initiatives and outcomes will be owned by each
member of the group that has taken part in the group project or
initiative.
Ways of Working
Together
All relationships must be handled in an open and transparent
manner, which comply with the requirements of guidance issued by
the Department of Health 1. Healthcare professionals have a
responsibility to comply with their own codes of conduct at all times.
1. There will be three meetings per year, plus ‘task and finish’ sub
group meetings as required supporting specific projects for the
forum.
2. The Chair will share minutes with the Mental Health, Dementia
and Neurological conditions steering group on behalf of the
Communication
Arrangements:
1
Best Practice Guidance on joint working between the NHS and pharmaceutical industry and other
relevant commercial organisations, DH (2008)
Version Control:
Version: 4.2
Date: 15/01/2015
Review: Jan 2017
Associated Costs:
Declaration of
Interest:
Version Control:
Dementia Advisory Group.
3. Third Sector and NHS members should provide at least 2
weeks’ notice for requests for items to be considered for
inclusion on the agenda.
4. No member of the forum will use the projects and initiatives of
the forum and the outputs there from solely for the commercial
gain of their respective member company.
5. The projects and initiatives of the forum and the outputs there
from will be owned jointly by each participating member of the
forum that has participated in the corresponding forum project of
initiative.
The meeting will be hosted by the NESCN in a suitable venue
jointly agreed.
The general principle is that all potential or perceived conflicts of
interest should be declared.
Version: 4.2
Date: 15/01/2015
Review: Jan 2017
Northern England Strategic Clinical Network
Dementia Advisory Group Work Plan
2015- 16
Document Information
Title:
Dementia Work Plan
Author:
David Newman, Dementia Lead
Circulation List:
Mental Health, Dementia and Neurological Conditions
Steering Group
Contact Details:
[email protected]
Telephone:
0113 853305
Version History:
Date: 17 July 2014
5/8/2014
12/8/2014
3/9/2014
15/01/2015
19/01/2015
Version:
1.0
1.1
1.2
1.3
1.4
1.5
Review Date:
Working Doc
Working Doc
Working Doc
Working Doc
Working Doc
LA comments
1
08/04/2015
1.6
14/05/2015
20/05/2015
02/06/2015
26/06/2015
10/08/2015
1.7
1.8
1.9
2.0
2.1
10/12/2015
04/01/2016
15/01/2016
2.2
2.3
2.4
New Version
for 2015/16
Update
Update
Update
Update
Name change
and update
Update
Update
Update
2
The Work Plan has been agreed by:
Position:
Name:
Organisation:
Date Agreed:
Mental Health, Dementia and Neurological Conditions Network Manager
Suzanne Thompson
Strategic Clinical Networks
Position:
Name:
Organisation:
Date Agreed:
Clinical Lead
Louise Allan
Strategic Clinical Networks
Position:
Name:
Organisation:
Date Agreed:
Clinical Lead
Johannes Dalhuijsen
Strategic Clinical Networks
Dementia Advisory Group members agreed the Work Programme on:
Date Agreed:
Review Date:
3
Contents
Dementia Advisory Group Plan...................................................................................................................................................... 5
4
Dementia Advisory Group Plan
Ite
m
1
Task & Aims
Action/Update & Status
Lead
Mapping Project
Meetings have taken place with
9 of 12 CCGs.
LA
JD
DN
1. Establish a picture of services
and issues across the SCN
geography.
2. Maintain engagement with
health & social care dementia
stakeholders to retain the
capability to work as a network
locally and regionally.
2
15/1/16
Metric
Timescale
Report to
be tabled
26/01/2016
Outstanding are South Tyneside,
Darlington and South TeesNew
meetings have been requested
but are not scheduled yet,
therefore production of the report
is likely to go ahead without
these final interviews.
CQUIN Project
1. To influence future hospital
dementia CQUIN according to
local experience
Last
Update
LA
DN
Ongoing conversation with Janet
Summers at NHS England. LA to
make contact again after latest
email.
10/12/15
2015/16
complete
proposal
5
3
Improving Diagnosis Project
1. To maintain the good
performance of the SCN area
regarding the ambition to achieve
a 67% diagnosis rate.
2. To improve communications/
publicity on why diagnosis is
positive
1. Updated (August)
DN
diagnosis rates are due in
September. There may be
an additional requirement
for interpretation and
dissemination due to
change in calculation and
DPC.
2. Potential newsletter/FAQ
of GP questions to give
LA
GPs confidence in the
benefits of referring.
Could link to PHE
New diagnosis rate methodology
has meant only Northumberland
& HRW CCGs are below
ambition. HRW have been
offered education session.
Northumberland are being
supported to understand any
potential issues with their
borders/demographics and their
prevalence.
10/12/15
Network
area
diagnosis
rate
?
6
4
Dementia Standards Review
1. Systematic review and consensus
(via Delphi) on which of the
various standards we promote as
a network.
2. Agree those that are key for
health (first stage) or social care
(second stage)
5
Initial review was conducted.
Further development on hold
pending putting out to tender.
There has been interest in
carrying out this work however:
1. Full costing has not been
established
2. Funding has not been
established.
Funding through
underspend has been
agreed at the MHDNC
clinical leads meeting.
Test case of getting
spending approved
through new NHS
England process is
ongoing. Tender on hold
pending results.
End of Life Care Theme
1. To better integrate end of life care
(Deciding Right) into the dementia
pathway
– Anne Bell has met with
Kathryn Mannix to discuss
shared goals and has shared
TEWV future well being tool.
TBA
10/12/15
Anne
Bell
Report
?
recomme
nding
regional
standards
?
26/1/16
4/1/16
7
6
Support Theme
Health pathway communication
1. Integrating a notification form
into communication between
diagnosing services and GPs.
2. Consult on Y&H technical
support package for GPs & the
implications for roll out in the
Northern SCN region
3. Cross sector pathway project
(see Pathway project plan for
details)
4. Further PDS projects to be
defined
1. Draft form has been
developed and shared.
Progress has been
hampered by similar
initiatives in individual
trusts and complications
around electronic
systems.
2. Suggestion to write up a
case study of the
progress and barriers
here. Any other actions to
take forward?
3. GP feedback has been
that the templates made
available are too
complicated to be
workable
4. Screen shots of GP
system templates sent to
JD to take this work
forward
LA
04/01/16
To be
defined
around
rollout/
adoption
of
improved
comms
2015/16
8
7
Better Technology Project
1. To have website, digital space or
technology to help
communication.
1. Improve the ease with
which publications can be
found on the website. DN
raised this issue.
Currently still problematic
due to tech & admin
capacity.
DN
4/1/16
Agreed
methods
in place
and
utilised
?
LW
2. Several members of the
support team are
currently testing Yammer
as a potential way to
collaborate online.
However, uptake is slow
and there are
technological and cultural
barriers to uptake.
8
Delirium Training Project
9
Prevention Theme
Link to overall network prevention
agenda (risk factors)
3. DN wrote to Karen
Nielsen requesting a
follow up meeting with JD
on GP engagement
1. Costings requested
from NTW trust via
ION finance
2. Need to build list of
key contacts in trust
education
Raised with PHE the idea of
better use of dementia in public
health messages
Alcohol & Dementia suggested
to NEDA as a meeting theme
Dementia awareness week is
15-21 May 2016
Andy
Teod
orczu
k
Still no
update
on
progress
as of
4/1/16
DN
Number
of
delegates
trained?
?
?
10/12/20
15
9
10
Physical Health and Dementia
Theme
Identified area for potential work
or future event
No further progress
DN
?
?
10/12/15
10
Dementia
Helping your
brain to stay
healthy
www.nhs.uk/nhshealthcheck
Produced by
Public Health England
Why have we written this leaflet?
The NHS wants to help keep people healthy. This could lower
their chances of getting dementia – symptoms caused by serious brain disease.
Many people don’t know that what they do every day can help keep a healthy
brain. The good news is that it’s never too late to act.
What is dementia?
Dementia affects the way the brain
normally works. This makes it difficult
to do every-day activities. For example,
people who have dementia often forget
things or get confused.
There are different types of dementia. All
of them interfere with daily life. And all
of them get worse over time. Alzheimer’s
disease is one type of dementia.
Dementia affects about 850,000 people
in the UK. This is as much as the entire
population of Liverpool and Manchester.
Most older people do not get dementia.
But those people who are affected
are usually over 65. It cannot be cured
but you can reduce your chances of
getting dementia. Even if someone has
dementia, they can take action to lessen
the symptoms.
Myths about dementia
Myth 1: Dementia is inevitable.
If you are going to get it there is
nothing you can do.
Fact: Dementia is not inevitable. You
can act every day to reduce your
chances of getting dementia. Some
of the things you can do are
described later.
Myth 2: Dementia is inherited
from your parents.
Fact: Dementia is only inherited in
a very small number of cases. Most
dementia is not inherited.
Myth 3: Alzheimer’s and
dementia are the same thing
Fact: Alzheimer’s disease is the most
common cause of dementia. About
two out of every three people with
dementia have Alzheimer’s.
Myth 4: You don’t need to do
physical exercises as long as you
do crosswords and Sudoku
Fact: It is always good to stimulate
your mind and your memory. But
we know that a healthy lifestyle is
the best way to reduce your chance
of getting dementia.
The symptoms of dementia
•Forgetfulness. For example, trouble
remembering what has happened
recently or recognising familiar people
and places.
•Problems planning and doing tasks
you used to do easily. For example,
dealing with money, following a cooking
recipe or writing a letter.
•Feeling confused even in a familiar
place.
•Finding it hard to follow
conversations and losing the thread
of what you were saying.
•Trouble controlling your mood
or behaviour. For example, feeling
depressed, agitated or irritable.
If you have these symptoms it may not
mean that you have dementia. Other
things can cause the same symptoms.
Whatever the cause, it is best to speak to
a professional. Make an appointment with
your doctor or contact the Alzheimer’s
Society for more information (contact
details at the end of this leaflet).
Reducing your risk of
dementia
Your memory and your ability to think
and communicate all depend on your
brain. By keeping a healthy brain you can
reduce your chance of getting dementia.
The recommendations below will help
to keep your brain active and healthy.
Be physically active
Being physically active will help reduce
your risk of dementia. It will improve how
well you feel. And it will help to keep your
heart, bones and muscles healthy. Aim
to be active every day for 10 minutes or
more. Try not to sit for long periods.
Look for small ways to add more
movement to your daily life
Get off the bus one stop early and
walk. Walk short distances rather
than take the car. Walk your dog for
longer. Take the stairs not the lift.
Use your bike to get around.
If you have mobility problems
Walk short distances and build up
to longer ones. Use a suitable bike.
Do chair exercises. Go swimming.
Do some housework. Work in your
garden. Play with your grandchildren.
Eat healthily and maintain a
healthy weight
A healthy diet will help reduce some
forms of dementia. Unhealthy eating
and being overweight can affect the
blood supply to your brain. And this can
affect your thinking.
Aim to eat less sugar and salt. The
fat in sausages and processed meats,
butter and cakes can increase the
risk of heart disease and other health
problems linked to dementia. Try
to eat less of these foods, less fried
food and less sugary sweets and
drinks. And eat more oily fish like
salmon and sardines and more fruit
and vegetables.
Don’t drink too much alcohol
There are no safe levels for drinking
alcohol. Drinking alcohol can harm your
brain. Drinking at high levels over time can
also cause alcohol-related brain damage.
If you choose to drink:
• Men and women are advised not
to regularly drink more than 14
units of alcohol a week (6 pints of
beer or glasses of wine).
• Spread your drinking over three
days or more if you drink as much
as 14 units a week.
The more you drink above these
amounts, the more chance you have
of harming your brain.
Give up smoking
Managing your health
Smoking almost doubles your chance
of getting dementia. Smoking is
very harmful to the heart, lungs and
circulation of your blood. This can
affect the blood vessels in the brain.
By giving up smoking you can reduce
the risk of dementia.
Some people may already have a
health condition such as high blood
pressure or diabetes. To reduce your
chance of developing dementia it is
really important to manage your
health by taking the medicines you’ve
been prescribed.
It’s never too late to give up
smoking. People who quit aged
60 can add three years to their life.
There are trained advisors who can
provide information and medication
to help you to stop smoking. The
NHS Smokefree Helpline is free to
call on 0300 123 1044 or talk to
your GP or pharmacist for advice.
Ask about e-cigarettes as a way to
help you give up.
Find out more
Alzheimer’s Society
Phone: 0300 222 11 22
Email (helpline):
[email protected]
Website: www.alzheimers.org.uk
You can also find out more about
reducing the risk of dementia from
Alzheimer’s Research UK in the
‘Reducing your risk of dementia’ booklet
at: www.alzheimersresearchuk.org
Connect with people around
you
Staying mentally and socially active will
improve your personal wellbeing. It
could also help to improve your chances
of delaying or avoiding dementia.
Keeping mentally active by learning
new skills or joining clubs can also
be a good way to connect with
other people and improve mental
wellbeing. You could play Scrabble,
cards or bingo, do puzzles, help
your grandchildren with their
homework, join a quiz or darts
team.
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