Evolve Business Centre, Houghton-le-Spring, DH4 5QY AGENDA. 1. INTRODUCTION Lead Enclosure. 1.1 Welcome and Apologies 5

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1 Meeting: Dementia Advisory Group Date: 26 January 2016 Time: 14:00 Venue: Evolve Business Centre, Houghton-le-Spring, DH4 5QY AGENDA 1. INTRODUCTION Lead Enclosure 1.1 Welcome and Apologies Declaration of Interest 1.3 Minutes from last meeting 5 Enc 1 2. AGENDA ITEMS 2.0 Dementia and Learning Disabilities JT (15) 2.1 Gateshead Vanguard KF(5) 2.2 Revised Terms of Reference (All comments have been incorporated) Updated work plan (as there is little time to discuss the whole document, members asked to raise any specific questions they have) Draft Dementia Mapping Report 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) 2.6 Update on Pathways Workshop (19 th Jan 2016) Well Pathway for Dementia update (Fingertips) 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) Mindmate App (via NHS Innovations North we ve been asked if there is a Dementia expert with an interest in 10 Enc 2 10 Enc 3 20 To be tabled Enc 4 5

2 the use of technology to assist patients and their carers who would like to be involved ) End of Life update 5 3. STANDING ITEMS 3.1 Any Other Business Next Meeting 4. MEETING CLOSE

3 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 ST DS ST JS SM CB JDn HC BH Apologies: Name: Initials Frances Naylor, GP Lead, Northumberland CCG Kate Brundle, Head of Commissioning, Northumberland CCG 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 AB KN JG FN KB 1

4 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. KN / BH 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. CB ST spoke about the MHC Involving People Forum and how this feeds into the MHC 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. AL 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. 2

5 Facilitate and promote integrated working practices. Revised TORs to be sent to the group for review, comments back in 3 weeks. 2.2 Review work plan & progress so far The group reviewed the work plan. will update the group on the mapping project at the next meeting. CQUINs ST to liaise with Anne Greenley from NECS and provide an update at the next meeting. LA to contact Acute Care Leads. / AL 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. 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. AB updated the group on the memory clinics promoting Deciding Right across Teesside. 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. 2.4 Cross Sector Pathway Group This group looks at a regional pathway. Further feedback at the next meeting. Enc 1 3

6 2.5 Dementia Diagnosis in Acute Settings (Potential Acute Care Providers Group) Representation from all providers to be invited to next meeting. 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. 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

7 Northern England Dementia Advisory Group Northern England Strategic Clinical Network (NESCN) TERMS OF REFERENCE Chairperson: Dr Louise Allan NESCN Clinical Lead Membership: 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 Frequency of Meetings: Quorum: Public and patient involvement to be achieved via member links to local collaboratives, charities, alliances, forums and local carers organisations. There will be three meetings per year or more often if the Chair deems this necessary. The quorum for the Forums meetings is a minimum of one-third of the total number of members plus one. Admin: Action Points Minutes Purpose: 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.

8 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. Accountability: Chair will be for 2 years with an option to extend for a further 2 years (maximum 4 years term of office). Accountable to Northern England Mental Health, Dementia & Neurological Conditions Strategic Clinical Network. Ownership of Group Projects and Initiatives: Ways of Working Together Communication Arrangements: All projects, initiatives and outcomes will be owned by each member of the group that has taken part in the group project or initiative. 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 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

9 Associated Costs: Declaration of Interest: 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 Control: Version: 4.2 Date: 15/01/2015 Review: Jan 2017

10 Northern England Strategic Clinical Network Dementia Advisory Group Work Plan Document Information Title: Dementia Work Plan Author: David Newman, Dementia Lead Circulation List: Mental Health, Dementia and Neurological Conditions Steering Group Contact Details: Telephone: Version History: Date: 17 July 2014 Version: 1.0 Review Date: Working Doc 5/8/ Working Doc 12/8/ Working Doc 3/9/ Working Doc 15/01/ Working Doc 19/01/ LA comments 1

11 08/04/ New Version for 2015/16 14/05/ Update 20/05/ Update 02/06/ Update 26/06/ Update 10/08/ Name change and update 10/12/ Update 04/01/ Update 15/01/ Update 2

12 The Work Plan has been agreed by: Position: Name: Organisation: Date Agreed: Position: Name: Organisation: Date Agreed: Position: Name: Organisation: Date Agreed: Mental Health, Dementia and Neurological Conditions Network Manager Suzanne Thompson Strategic Clinical Networks Clinical Lead Louise Allan Strategic Clinical Networks Clinical Lead Johannes Dalhuijsen Strategic Clinical Networks Dementia Advisory Group members agreed the Work Programme on: Date Agreed: Review Date: 3

13 Contents Dementia Advisory Group Plan

14 Dementia Advisory Group Plan Ite m Task & Aims Action/Update & Status Lead Last Update 1 Mapping Project Meetings have taken place with LA 9 of 12 CCGs. JD 15/1/16 1. Establish a picture of services and issues across the SCN Outstanding are South Tyneside, geography. Darlington and South TeesNew 2. Maintain engagement with meetings have been requested health & social care dementia but are not scheduled yet, stakeholders to retain the therefore production of the report capability to work as a network is likely to go ahead without locally and regionally. these final interviews. Metric Timescale Report to be tabled 26/01/ CQUIN Project 1. To influence future hospital dementia CQUIN according to local experience Ongoing conversation with Janet Summers at NHS England. LA to make contact again after latest . LA 10/12/ /16 complete proposal 5

15 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) 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 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. LA 10/12/15 Network area diagnosis rate? 6

16 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 End of Life Care Theme 1. To better integrate end of life care (Deciding Right) into the dementia pathway 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 MHC clinical leads meeting. Test case of getting spending approved through new NHS England process is ongoing. Tender on hold pending results. Anne Bell has met with Kathryn Mannix to discuss shared goals and has shared TEWV future well being tool. TBA Anne Bell 10/12/15 4/1/16 Report recomme nding regional standards?? 26/1/16 7

17 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

18 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. raised this issue. Currently still problematic due to tech & admin capacity. LW 4/1/16 Agreed methods in place and utilised? 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. 3. wrote to Karen Nielsen requesting a follow up meeting with JD on GP engagement 8 Delirium Training Project 1. Costings requested from NTW trust via ION finance 2. Need to build list of key contacts in trust 9 Prevention Theme Link to overall network prevention agenda (risk factors) 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 May 2016 Andy Teod orczu k Still no update on progress as of 4/1/16 10/12/20 15 Number of delegates trained??? 9

19 10 Physical Health and Dementia Theme Identified area for potential work or future event No further progress 10/12/15?? 10

20 Dementia Helping your brain to stay healthy Produced by Public Health England

21 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.

22 Give up smoking 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. 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 or talk to your GP or pharmacist for advice. Ask about e-cigarettes as a way to help you give up. 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. Managing your health 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. Find out more Alzheimer s Society Phone: (helpline): helpline@alzheimers.org.uk Website: 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: 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. Crown copyright p Dec 15 1 mill (ANT) Produced by Williams Lea for Public Health England If you require further copies of this title visit and quote /Free NHS Health Check Tel: Minicom: (8am to 6pm, Monday to Friday) Local NHS Health Check provider stamp here: