Annual report for 2018-2019 - Dementia and Alzheimer's …



TOC \o "1-3" \h \z \u 3 Nations Dementia Working GroupAnnual report for 2018-2019Overview of the year PAGEREF _Toc11764462 \h 1Membership PAGEREF _Toc11764463 \h 2Campaigning PAGEREF _Toc11764464 \h 2Speaking PAGEREF _Toc11764465 \h 2What have we spoken about? PAGEREF _Toc11764466 \h 3Where have we been influencing change? PAGEREF _Toc11764467 \h 3Three Nations PAGEREF _Toc11764468 \h 4Plans for 2019 PAGEREF _Toc11764469 \h 4Acknowledgements PAGEREF _Toc11764470 \h 5Overview of the yearIn the past year we have made great progress. There have been several changes in the membership of the steering group, and we have grown our wider membership to over 65. We also have over 150 people on our newsletter mailing list. Our steering group has ten members, with two vacancies, one of which we would like to be filled by someone from Northern Ireland. We have held six face to face steering group meetings, in London, Oxford and Manchester. We have also started monthly webinar meetings between these, to keep in touch better and to reduce travel. This has also presented an opportunity to equip members with new technological skills.Another innovation is fortnightly Twitter events on a variety of subjects. We want to become better known on social media, and it is a great way of finding out what others are doing and saying. We are gaining engagement which continues to grow with each event. In September a film was made about the 3 Nations Dementia Working Group during our two day meeting, and this is now on the home page of our new website. In August we selected and commissioned a web design company to create our new website, and this is now fully functional, if a little short of content as yet. The website has had good engagement, with the average user spending 3.5 minutes on the site, which, we are informed, is an excellent statistic. A membership application process is on the site, as well information about what we do and offer, and our regular newsletters.We therefore have a firm structure and tools to enable us to move forward strongly in 2019.MembershipWe now have 65 members around the three nations. Currently we restrict membership to people living with dementia or mild cognitive impairment. However, we want to be the “go to” group for professionals and unpaid carers as well, and we have decided to open associate membership for these groups too. Associate members will receive updates and will be invited to partake in opportunities which will be relevant to them. Associate members will also add to our numbers when it comes to campaigns, surveys or petitions, and in turn it gives everyone who wants to the opportunity to support and share the 3NDWG’s work. The core membership and steering group will remain people living with a diagnosis of dementia. We also are keen to represent people living with dementia in care settings. Their voices are rarely sought or heard, so we are exploring models of membership for this very large important group.Campaigning3 Nations Dementia Working Group is, amongst other activities, a campaigning group. We want to influence improvements in all aspects of living with dementia, and we have had lengthy discussions on issues such as the post code lottery of support provision, the collapse of social care services, changes to the Mental Capacity Act, and the quality of dementia care in care homes.We have launched a petition on the 38 Degrees website, calling for action to address the cuts in social care funding in recent years. The reduction in availability and quality of social care has a disproportionately negative effect on people living with dementia.A few members of the group spoke at the launch of the All-Party Parliamentary Group (APPG) on Dementia’s inquiry into dementia and disability, and many members submitted their experiences and thoughts as part of the inquiry, the findings of which will be published later in the year. Furthermore, Debbie Abrahams MP has agreed that the 3NDWG can sit as non-parliamentarian members of the APPG, which is a brilliant opportunity to influence politicians, and demonstrates the APPG’s commitment to listening to people living with dementia. In March 2019 we held a workshop to learn about how to campaign effectively, reaching as many people as possible, with the Alzheimer’s Society campaigns team. We learned some of the tools and tricks of social campaigning to ensure our voices are heard, and spoke about the ways in which we can work together with the team to support each other’s campaigns. In 2019 we intend to choose another theme for a campaign to get real improvement in care and support for people living with dementia.SpeakingMembers of the steering group have been busy speaking at events around the three countries, in Europe and even across the world. In 2019, we would like to share even more speaking opportunities with our wider membership.We have travelled to speak in:Barcelona (Alzheimer’s Europe)Belfast (Alzheimer’s Society Dementia Voice) Birmingham Bolton Brighton (UK Congress)BristolBrusselsCardiffChicago (ADI Conference)County GalwayCumbria ExeterHay (Literary Festival)LeedsLiverpoolLlandudnoManchesterNottinghamRhuddlan RochesterSalfordSheffieldShrewsburyStokeTodmorden WestminsterWe have been featured on local radio and television several times too, and in a two page Daily Mirror article.Our members Wendy Mitchell and Keith Oliver both had books about living with dementia published during the year.What have we spoken about?Principally, steering group members speak about their own experiences of living with dementia as a way of informing professional staff and political leaders on the state of dementia care in the three nations. We have spoken more specifically about:What matters to people living with dementia?The health and care systemsRights, including CRPD (Convention on the Rights of Persons with Disabilities)Dementia care in hospitals and other health care settingsPost diagnosis supportDisability and dementiaDementia in the NHS Long Term PlanPost code lottery of dementia care and supportProposed changes to the Mental Capacity ActPalliative careDementia friendly communitiesWhere have we been influencing change?These are some of the events and conferences that our members have spoken at this year:All-Party Parliamentary Group Enquiry into Dementia and DisabilityAlzheimer’s Disease InternationalAlzheimer’s Society Annual Conference (opening session)Alzheimer’s Society Management ConferenceAlzheimer’s Society report on the Prime Minister’s ChallengeAlzheimer Europe (European Working Group of People with Dementia)British Film InstituteBritish Psychological Society conferenceBuckingham UniversityChannel 4 Disability Conference, ChesterClinical Commissioning GroupsConservative Party ConferenceCQC annual conferenceDementia Cross Party Group, WalesDementia Discovery FundDementia Friendly Churches conferencesDementia Friendly Communities ConferenceDementia Friendly London SummitDementia in Rural Ireland conferenceDementia is Everyone’s Business conferenceDementia United Strategic Board meetingDepartment of Health and Social Care Programme BoardElder Mediation Summit, BristolEuropean Age Platform Conference, BrusselsGlobal Disability SummitHay Literary FestivalIDEAL research project conferenceKent Community Health TrustKings Fund ConferenceLabour Party Conference Manchester Airport Accessibility ForumManchester UniversityMental Health and Substance Misuse Committee, WalesNational Audit of DementiaNHS Long Term Plan conference (speaking directly to Matt Hancock MP)Northern Ireland Dementia Voice conferencePushing Up Daisies conference, TodmordenSheffield University MA in Dementia Studies course (lecturing)Stafford Health Economy Working Group on DementiaTransitions into Old Age eventUK Dementia CongressWelsh Ambulance ConferenceWorld Alzheimer’s Day ‘Ask the Experts’ panelWorld Dementia CouncilThree NationsYou will see from these lists of activities that we are involved across most areas of England and Wales, but less so in Northern Ireland. This could possibly be partly attributable difficulties presented by geography and travel, and lack of membership in the country. We will continue to work with all organisations we can to spread our influence. In Northern Ireland the Alzheimer’s Society Dementia Voice team is working hard to increase influence too.Plans for 2019Our main plans for the coming year are:To grow membership of 3 Nations Dementia Working Group To recruit one or more steering group members in Northern IrelandTo be better known by professionals so that they come to us for advice, information and speaking activitiesTo get seats at the table on influential committees and decision making groupsTo develop our campaigning expertise To identify key issues to campaign on, andTo work closely with Alzheimer’s Society so that we can together get the changes we so desperately want to see, and need.AcknowledgementsThe steering group wishes to acknowledge the support of our Project Support Officer Hannah Fitzgibbon and her colleagues who actively enable, support and promote us. We also thank the Alzheimer’s Society for following through on their commitment to supporting us by continued funding of the group.Thank you to all of our members across the three nations for their contributions to our work, and to those members of the steering group who have stepped down in the past year.Written by the 3 Nations Dementia Working Group Steering Group, April 2019. ................
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