Minutes for Forget-Me-Nots meeting on 10/02/17 at Thanington Resource Centre, Canterbury

Transcription

1 Minutes for Forget-Me-Nots meeting on 10/02/17 at Thanington Resource Centre, Canterbury Attendance: Members Staff Students Unable to attend Anne-Marie Melvyn Sheila Carol Julie Keith Anne H Chris R Chris N Mark Eddie Celia Carolina Martin T Martin C Chris H-A Conrad Reinhard Lewis Celina Sammi Michael - Charles - Trevor - Tony - Elizabeth - Polly Welcome, introductions, visitors & apologies: Chairs for the meeting: Reinhard Co-chair: Anne-Marie Apologies: Charles and Elizabeth. Welcome to Liz Taylor and Kate Comfort: o Liz Taylor (Service manager for East Kent Alzheimer s Society). Staff include: 2 dementia support workers, a part-time group facilitator and a part-time administrator. Peer support groups and cafes are currently running for anyone interested. They are currently being funded by Kent County Council 1

2 (KCC) until April Adverts for the groups are put on the KCC website. Groups e.g. EKIDS/Age UK put in tenders for events then money is given out accordingly. Peer support groups are essentially opportunities for coffee and a chat to get problems off one s chest. Currently there is one in Ashford (which runs twice a month by Tesco) and one in Dover (which runs once a month at the Beacon church). There are no more currently due to the funding situation. Groups and cafes are open to anyone and are accessed by contacting students who can pass on information to Liz or Kate. Anne-Marie: how do we find out about them if not online? Liz said that this is an issue that they are aware of. There had been suggestions and there will be consultations regarding this issue. Liz will give update on results of consultations. In other news, there has been a re-publishing of the Dementia Guide which now includes photographs of people of multiple ages, backgrounds and abilities. As per service users suggestions, the newly published Dementia Guide has different coloured tab in each section to make reading easier. The new Dementia Guide had both FMN and BPS involvement. Alzheimer s society had produced a new design for badge. Badge is only accessible online as of now. For anyone who is interested to have one, but can t access the website, contact Liz or one of the students. o Kate Comfort (dementia support worker) is currently the only full-time one in East Kent. Kate networks with other organisations and visits people with dementia at home (once or twice in total) to see what they need and respond to what they say. Kate said that she signposts people to other services if they need them (such as befriending services as this is not something which is offered by her). Kate runs a service-user review panel (SURPs) which have previously looked at material such as the Living Well with Dementia magazine, etc. Keith gave information about the Canterbury SURP (Canterbury Pilgrims) including that one subject is discussed for hours. The purpose and benefits of the groups were questioned as they are thin on the ground. Members of the groups also get something from the discussions. 2

3 Carolina asked Kate why she hasn t answered the phone call from her husband a few months ago. Kate said there was no record of the call, but she will be happy to look into it and help Carolina if she needs it. Liz said that she will also look into this for Carolina. If FMNs are interested in any groups or cafes, let students know and they will forward your details on to Kate. New dementia guides will be sent to students to bring to next meeting in case attendees did not get to pick one up due to the limited supply.. To discuss: 1) Update on the FMN website (Reinhard) The FMN website is moving along. Reinhard said that they have a helping hand in the KMPT communications department who has organised where to find group s page. People can now look on the KMPT page for service-user involvement groups and then link straight to the FMNs page. o The URL is: If there is any content you would like to add, let staff know and they can communicate with the necessary people to add it to the website. The current FMN website has content including updated minutes. 2) Update on the volunteer coordinator (Reinhard) Nothing new from last month. They are waiting for the job advert to be put out. There is a volunteer who is almost ready to start. They would like more information and to attend a monthly meeting. They have not contacted students yet and this must be followed up (Michael to do). 3) Update on the Back to Work campaign (Chris R) Think Tank is working on similar project. There is a meeting coming up to take this forward. Back to Work campaign will be discussed in steering committee and will update Chris on results. 4) Update on the logo for banner (Reinhard/Sammi) The new banner template came through (with an updated badge) from the communications department. The group reported that it now looks much more like the suggested design. There was a discussion about the sizing of words on the poster. 5) Facebook group for people with dementia and carers in Kent (Mark) 3

4 Mark went to other parts of the country which have Facebook pages where members ask questions and are informed about events. The question was asked: Do FMNs want a Facebook page? Lots of people were interested in hearing about other groups Facebook pages/groups Mark agreed to collate information about other groups to present at the next meeting. To be added to March agenda. 6) Coloured Cards (Chris N) Sometimes it is difficult to get fair opportunities to speak in meetings. In other groups, people have cards and if a member wants to say something, they hold up a card with the written message: I want to speak please to help chairs identify who wants to speak and to stop people from being talked over. Many FMNs noted that it s a good idea. Cards can be made easily To be made for the next meeting in yellow but need to make the agenda a different colour. Feedback from recent events: 1) Items from Keith Keith updated members about Charles heart attack. Charles was stabilised and was able to stay at home. He is getting better but is shaken up. He wishes to be remembered to the group. Keith said that Dementia Diaries is now been run by Rachel Niblock ( , niblock@myid.org.uk). Keith noted that he was proud and moved to see a film involving Melvyn and others. The guardian published it online alongside Dementia Diaries. Over 63,000 people saw it in the first week. URL = The link to film needs to be on the new FMNs website. Keith and Polly going to event in London soon about funding for research projects into causes and care for people with dementia. Each project will cost 2million and there are 12 possible options. o Attendees were told that more money is allocated to some projects depending on factors like the length of the project. o The annual budget in 2012 was 2milllion. It is expected next year that they will spend 10million which will rise to 15million in next 2 years. o Due to the success of the panel set for the appointment of the Dementia Institute Director, the MRC is now looking to use Service Users affected by the relevant conditions in future interviews for appointments. 4

5 o There was a query about a research project into MRI markers. It was explained that these are for identifying what to look for in MRI scan images. Reinhard questioned whether it was necessarily a care project. Keith agreed to bring the application for the MRI project in April to provide all with more information about it. Melvyn suggested to Keith that he bring up projects for stigma as none received funding in this round of applications. o Keith spoke at an NHS conference in London with Lewis in front of lots of professionals and reported it as a success. o Three Nations Dementia Working Group: a new national network was set up of and for people with dementia. It covers all areas of England, Wales and Northern Ireland and will serve to be a force in advising Government professionals and charities. Keith has been asked to be the representative from the South East. Everyone with a diagnosis will be able to join which could amount to 850,000 members. More information will come in the summer. o In KMPT 4 years ago, the diagnosis rate was 38%. Now 4 years later it is 68%. o Books: Walk the Walk, Talk the Talk has raised a total of 2300 for the Alzheimer s Society and Innovations in Dementia in 3 months. Welcome to Our World has raised over 6000 in total and is now available again from the Alzheimer s Society online shop and through Keith. There is a new book coming out which will be published later this year which Keith has been asked to write the preface for. In the Happiness in Dementia chapter, the author mentions Welcome to Our World and notes that they wish that support to find meaning in dementia as happened with the book FMNs wrote would be available to all. Martin T: songs of praise which is usually shown on a Sunday evening will be making programmes about denominations of Christianity. It will start in St. Martin s church. Martin had brief chat about Augustine s relation to the church. It was a challenge but completed. Following the chat he told them he had a diagnosis it may be used in the broadcast. Break Small group discussion: 1) Opinions on Helen Greatorex s 10 commitments FMNs reviewed the statements and commented on them. This will be collated and fed back to Helen. Helen has agreed to come back to a future FMN meeting. 2) Twitter update: The group was given the latest analytics about the FMNs twitter page including that we now have 620 followers gaining 23 since January. 5

6 Attendees were asked if they would like to add anything to the page Future events/visitors: 1) Evaluation of Marlowe Theatre, Canterbury on 22 nd February 12.30pm-2:45pm. Evaluation of how dementia-friendly the Marlowe Theatre is as a location. Sammi has contacted interested FMNs. The person leading in the Marlowe is called Kim and Philly Hare from DEEP is also due to attend. FMNs to meet in foyer of Marlowe. In response to a question from Eddie about the progress of dementia research, Keith mentioned recent articles in the Times newspaper. The conclusion was that a cure is a long way off. Lots of research has focused on mice injecting protein which leads to dementialike symptoms in the mice. Drug treatments which have been used may not be applicable to humans. Keith to send to students copies of the mice article before the next meeting for copying. 2) Life More Ordinary project involves three artists working with small groups of people with dementia to capture artistically what it means to live with dementia. The artists are available on 7 th & 8 th March, and Maidstone and Canterbury were being suggested as locations. Attendees were asked if they were interested. Carol & Sheila were, as was Anne- Marie if there is no drawing involved. These members to be given information about the Canterbury date. Need to finalise the date and communicate this to members.... Open forum: Lewis spoke about the Power of the Object Group which is a new project following on from the sculpture project Celia attended. It will commence on the 24 th Feb at the Beaney in Canterbury. People need to book in advance but it is free. Chris R is taking part in an upcoming online research project about four types of dementia. Keith shared an from Liz Jennings who has spoken to people at Odeon and said that they can offer after-film talks following senior screen showings for minutes. 3 for buy one get one free plus refreshments. Films start at 11am. Melvyn: Transport for people with dementia is difficult. FMNs have spare money and would like to talk at the next month s meeting about spending some of this on transport for those who need it (to get to and from FMN meetings). To be added to the next agenda. 6

7 Lewis: Chris H-A has helped support FMN social meetings but is now unable to do so due to a lack of time. Is anyone else willing to provide reminders? There is also a new service-user involvement group starting in Sittingbourne therefore Lewis may be stepping back slightly from the group but will be back if needed. Agenda for the next meeting Facebook group for people with dementia and carers in Kent (Mark) Using FMN money for transport (Melvyn) Next chair for the meeting: Chris R Dates of next meetings: The next social meeting is on Monday 20 th February from 12:30-2pm at the Abode Hotel (on the High Street, near the Marlowe Theatre). Please note that these happen on the third Monday of every month. If anyone would be willing to give reminders for future FMN socials, please speak to Chris H-A or staff! The next business meeting is on Friday 10 th March from 2-4:30pm at the Thanington Resource Centre, Canterbury. Please note that these happen on the second Friday of every month. If you would like to add anything to the agenda please contact: Stephanie Celina (Celina): stephanie.celina@kmpt.nhs.uk Sammi Bellamy: samantha.bellamy@kmpt.nhs.uk Office: Office: Mobile: Michael Blackburn: michael.blackburn@kmpt.nhs.uk Office: