April - May 2018 Newsletter of The South and West Cornwall MS Group

South & West Cornwall MS Group Newsletter April - May 2018 Welcome!

Donation to Stem Cell Research We have been hearing a lot about this topic in recent times. It is providing “hope” of a positive treatment to MS. The topic and news feeds are of great interest to many of our Members.

So therefore, at our Volunteer meeting Tuesday 17th April, we unanimously agreed to donate the sum of £2000 to the cause.

Something closer to heart affirmed our decision. Malcolm our late Group Co-ordinator, was offered the opportunity to undergo the procedure and accepted. Unfortunately he never had the chance and “hope” it offers. We hope all our Members join with us in making this donation in memory of our inspirational leader, Malcolm Glister who passed away on the 14th Feb. 2018.

Apologies Some of our Members may have received their copy of the last newsletter, March - April whereupon on page 2 (two) was a list of events. At our Volunteer meeting in March we decided to have a “Get Together at Beefeater, Carnon Inn and the venue was booked for the 19th of May. Unfortunately that date is the date of the forthcoming marriage of HRH Prince Harry to Meghan Markle. Sorry for not realising the importance of the day to some of our Members. Therefore the event will not be held on the 19th of May but has been re-booked for the 9th of June. We wish the lovely couple every happiness on the day and throughout their married life.

So, Come along on Saturday 9th June for lunch and are pleased to welcome, Sarah Cowling a Therapist from Merlin to tell us about her work and update us on the hydrotherapy at Merlin. We look forward to seeing many Members supporting this event. As our Group Volunteers wishes to share great food with great company, all our Members who attend will be given a voucher to provide lunch. We have decided to provide a voucher to the value of £10! Yes, TEN POUNDS! So that will provide a good lunch with items starting at £5 on the lunchtime menu, there will be plenty to chose from. We look forward to seeing you there. Old Friends, new Members, bring and introduce your Family to us. Show them what The South and West Cornwall MS Group is all about and what a "friendly, Family Group we are!

Bring and Buy Coffee & Seedling Morning Hilary our Finance Volunteer has received a cheque for £500 from Jane Rogers and Annie Walker of, Two Quays House, Gweek the proceeds of their recent event on 14th April. Well done to Jane and Annie for their hard work in raising this for our Group, together with Children s Hospice South West.

There will be another event later in the year.

All views expressed in this publication are individual and not necessarily the view or policy of the charity and its supporters.

Multiple Sclerosis Society Registered charity nos. 1139257 / SC041990

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Wendy and Kev Hughes Cake Day on Saturday 28th April

Wendy and Kev’s Cake Break An invitation was made by Wendy and Kev Hughes of Penryn to our Group to come to their Cake Break on Saturday 28th of April. They had an “open house” sharing lots of different cakes and other delightful treats with family, friends and neighbours.

Raising funds for our Group, all the time. There was a raffle and other things to enter a chance to win a prize with boxes for donations, in exchange for some “real home made cakes”. As I would say “just like my Granny used to make!” Well I would say that because, I spent many hours just like this with my Gran, eating her wonderful cakes, who only lived in a house, opposite the road from Wendy and Kev. The cake break shows what a wonderful opportunity to capture and experience those memories. Thank you to Wendy, Kev and family for a “lovely afternoon” spent with a “lovely family” together with “lovely friends and neighbours” eating some really “lovely cakes”!

Wendy has said that £250 was raised! Well Done! Mike M.

Bingo at Carnon Downs on the 1st and 3rd Saturday of each Month

Amanda and Richard Chapman are two Members who organise two bingo sessions for anyone to come along at Carnon Downs Village Hall on the first and third Saturday’s of the month. Six games of bingo is played together with a card game (called Oi or something pronounced like that!) and a raffle. Cash prizes are awarded with remaining cash donated to our Group. Depending on how many people come to the bingo, we have £30 or near £100 donated. The venue also provides an opportunity to meet and share a cuppa with other Group Members who attend, together with the public. So come along and have a good time. You may go home with more cash than you came and spent with!

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Killiow Golf Club - Carvery Sunday Lunch Karen has organised an event at Killiow Golf Club, Killiow Estate, Kea, Truro, TR3 6AG,on Sunday the 12th August at 12.30 PM. We have had this event before on the 8th of October 2017 and was thoroughly enjoyed by everyone who attended Facilities at Killiow are wheelchair friendly. Please call Karen on 01872 274 188 to place your name on her list. All with MS and Carers free of charge. Guest’s as per menu prices on the day. Here are a couple of photo’s from last year at Killiow.

Christmas Luncheon at The Falmouth Hotel Karen has booked our Group to have a traditional Christmas Luncheon on the 8th of December meeting 12.30 PM for 1.00 PM lunch. All with MS and Carers free of charge. Further details will be published in the coming months.

“The Snow Ball” at Tregenna Castle Hotel This event is being hosted not by our Group, but by Morwenna Rice, Emma Sparks and Tamsyn Hall. It is taking place on the 23rd November with funds raised in aid of the MS Society and Macmillan Cancer Support. The event price of £35 per person includes a drink on arrival, three course meal, live music from “Sandy Acre 7” with a disco until 1.00 AM. We have been informed that “casino tables, a sweet cart and fun games a raffle and silent auction” with the organisers promising “one hell of a night!” Further details can be found here: http://www.wozzoncornwall.co.uk/events/the-snow-ball-tregenna-castle-st-ives-a20c6e Also their Facebook page: https://www.facebook.com/events/170326173576973/

CAB / CAC - Citizens Advice Cornwall There is a “fast track referral” to the CAB / CAC Cornwall for our Members. Malcolm was the “referrer” who would have sent details through the CAB portal should anyone wish to use it. We are pleased to tell you that the service is still in place with Mike M. and Martin Welton as the registered users. If anyone wishes to use the services of the CAB, please call 01872274911 or email: southandwestcornwall@mssociety.org.uk

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A Group Address If anyone wishes to send post, a membership form, or other correspondence to us, please send to: South and West Cornwall MS Group 2 Sara's Row Redbrooke Road CAMBORNE TR14 7AZ What is the GDPR ?

On May 25th, 2018, the “General Data Protection Regulation (GDPR)” will officially go into effect. The GDPR replaces the outdated 1995 Data Protection Derivative (DPD) by updating procedures for how organisations collect, handle, process, and protect an individual’s personal data. The DPD was an attempt to govern data protection across the EU. Since 1995, the ways in which organisations collect and process data has through dial-up to only .04 % of the global population. While mobile phones had been invented nearly twenty years earlier, only 16 % of British citizens owned one. Over the last two decades, Internet and mobile phone usage has radically altered the world.

Today, 48 % of the world has Internet access and have a variety of options/devices for connecting to the Internet. Mobile phone ownership in the UK has grown by 80 % and consumers can now access the Internet through mobile 4G networks. The prevalence of the Internet has allowed organisations to collect even more data about consumers.

Organisations now have access to everything from consumers' geo-location to bank account/credit card information. As our lives become increasingly monitored by organisations, new laws are required to address new technologies and ensure the protection of personal data.

Over the coming day’s and weeks left, all our Members will receive correspondence from National Centre about GDPR and what it means to us. Your membership will be updated accordingly, with your contact details, also with your preference/s of how we may contact you. Please ensure you read the details and respond. It is important as without knowing your preferences, we will not be able to send you a copy of this wonderful newsletter (honest - only joking) but seriously, we want to increase our circulation, not decrease it !! Any questions call us. Or email.

Telephone: 01872 274 911 - or email : southandwestcornwall@mssociety.org.uk Meeting for Lunch at Tricky’s, Redruth Our monthly meeting for lunch at Tricky's, Redruth, will be Monday 14th May. No need to book, just turn up, we pay for our own food and beverages. Meet at 12.30 PM with about fifteen to twenty Members coming, it's become a great event in our calendar. Look forward to seeing you there!

All views expressed in this publication are individual and not necessarily the view or policy of the charity and its supporters.

Multiple Sclerosis Society Registered charity nos. 1139257 / SC041990

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A Jumble Sale at Carnon Downs Village Hall Our Finance Volunteer Hilary, is a very prominent Volunteer for K9 Crusaders Dog Charity here in Cornwall. We have sometimes events (such as the Seedling Bring and Buy at Gweek) whereupon, we share the event, or help publicise an event for another charity. Merlin Tregothnan Open Day is one such example. We are pleased to help K9 Crusaders to "spread the word" about their forthcoming Jumble sale at Carnon Downs.

Together with Hilary, are three of our past and present Volunteers helping with the Jumble Sale. Some of our Members in the past has also called upon K9 Crusaders for help. Being looking for a dog as a companion, or if they may assist, in walking their dog in times of need. So well done to K9 Crusaders or all their sterling work. The South and West Cornwall Group supports everything they do.

The Jumble Sale at Carnon Downs Village Hall on the 2nd June starts at 11.00AM. After the sale, our twice monthly Bingo session starts at 2.30PM. Why not go to the sale and grab a bargain then have a spot of lunch up at The Carnon Inn, come back to the Bingo Also if you come along, old towels and blankets are always welcome to K9 Crusaders for their "Guests"!! So if you can provide some, please bring them along !

Hilary Merton our Finance Volunteer and a Poster Produced by K9 Dog Charity Promoting Their Jumble Sale on the 2nd June

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Half Term Trip by Train to Plymouth - By Mike May Every school holiday or half term, Ellen and I like to take our two eldest Granddaughters for "a day out" usually Penzance or Falmouth. But on the 16th of February, I booked for us to go to Plymouth. I have been thinking of doing this trip for some time. A month or so before, I went to Plymouth on my own to look at something in a shop, also to visit Malcolm in Derriford Hospital. It was not the same being on my own, as the day's Ellen and I used to have together in "better times"! I have wanted to see what "Changing Places" disabled toilets with a hoist and adjustable bench was like to give the "necessary care" one has to give to a loved one on such a time out from home.

One word..........FANTASTIC! The day was the best weather we have seen for a long time. I was told by someone in conversation the day before that "out of the last one hundred day's, there has only been six without rain!" Looking at the weather forecast on Tuesday, 13th February, Friday the 16th of February, was going to be the best day during the half term week. Having booked with GWR (Great Western Railway) Assisted Travel line on 0800 197 1329, we departed Truro on the 9.41 AM, arriving in Plymouth at 10.54 AM. Out of the station and onto a bus to the city centre (busses every two minutes it seems!) then straight to Scope in Cornwall Street, to facilitate personal care to my Wife Ellen.

On the Train Heading for Plymouth

Outside Plymouth Railway Station

Having Used “Changing Places” in Scope, Plymouth

Details about assisted travel by train: https://www.gwr.com/plan-journey/journey-information/assisted-travel Book 24hrs before and as well as the wheelchair space, two “companion” Seats can be reserved also.

Changing Places: http://www.changing-places.org/ (A National Key Scheme “RADAR KEY” is required to access the facility).

Detail’s Here; https://www.radarkey.org/genuine.php They can also be purchased from “The Tourist Office” Town Hall, Truro.

We had a choice of Scope or the facility at Drake Circus also. Scope was the nearest.

By 11.30 AM we were out shopping with the girls and Ellen "as fresh and clean as the minute she was dressed”, in morning by her Carers. Drake Circus was very busy when we visited and had just missed a party of about four young wheelchair users with their Carers having just used "Changing Places" there. Still 2.30 PM and still plenty of time to get back to the station for our 3.11 PM train back home, arriving into Truro at 4.25 PM, Home well before 5.00 PM in time for the “tea time” visit from the Carer’s!

All views expressed in this publication are individual and not necessarily the view or policy of the charity and its supporters.

Multiple Sclerosis Society Registered charity nos. 1139257 / SC041990

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Our Visit to Eny's Gardens, Penryn on the 9th of May

Thirteen or so Members met at Eny's Gardens, Penryn to enjoy a visit to see the annual display of bluebells and to walk around the grounds and gardens before having a lunch at the cafe'.

The weather was overcast but stayed mostly dry enough to enjoy the day. Some spots of light rain was felt but did not persist. The ground underfoot was dry and firm making excellent conditions to walk or use a scooter. There were some rather spectacular and colourful flowers on display through the gardens. Photographing them made a change from the awesome display of bluebells last year when we visited. A welcome lunch of soup, sandwiches or cakes with a

refreshing beverage, hot or cold, greeted us at the end of the walk, either sitting in or

sitting outside the cafe'.

We must thank Karen for all her hard work in planning trips like this for all of us to enjoy.

Can't wait for the next one!

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Some Useful Group Telephone Numbers and Other Contacts Finance Volunteer: Hillary Merton 01872 863896 MS Support Volunteer: Martin Welton 01872 274 911 Admin & Group Membership Volunteer: Janet Jelbert 01209 717776 Collecting Volunteers South: Karen and Keith Moore 01872 274188 Collecting Volunteers West: Ann and David Jones 01736 757297 Communications, Web and I.T. Volunteer: Mike May 01872 272957 Health & Safety Volunteer: Nikki Jenkin 01736 787089 Bingo Organisers: Richard & Amanda Chapman: 01872 870061 The Merlin Centre: 01726 885530 MS Nurses at Treliske: 01872 253063 Treliske Hospital General Switchboard: 01872 250000 St Michael's Hospital, Hayle: 01736 753344 West Cornwall Hospital, Penzance: 01736 874000 Camborne Redruth Community Hospital (Barncoose): 01209 318000 Falmouth Hospital : 01326 430000 Marie Therese House, Hayle: 01736 758875 Kernow Carers Service: 0800 5878191 Adult Care and Support - Cornwall Council: 0300 1234131 MS Society Helpline: 0808 800 8000.

Our Group telephone landline is available for general enquiries and is also a direct line for local MS Support: 01872 274 911 or email : southandwestcornwall@mssociety.org.uk Our email address which is separate and accessed, only by our Support Volunteer, Martin Welton is:

southandwestcornwallsupport@mssociety.org.ok

Contact Details for MS National Centre

By Post: MS National Centre (MSNC), 372 Edgware Road, London NW2 6ND TEL: 020 8438 0700

By Email: For General Enquiries; supportercare@mssociety.org.uk also; For Help, Guidance and Support; supportercare@mssociety.org.uk All views expressed in this publication are individual and not necessarily the view or policy of the charity and its supporters.

Multiple Sclerosis Society Registered charity nos. 1139257 / SC041990