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Mid Kent Matters
Autumn 2019
DATES FOR YOUR DIARY
Wednesday 18th September
Support Group
Wisdom Wellbeing & Therapy Centre, 10 am – 2pm
and on 2nd & 16th October; 6th & 20th November; 4th & 18th December; 15th Jan
Friday 20th September
Support Group
Heart of Kent Hospice, 10am – 2pm
and on 18th October; 15th November; 13th December; 3rd January
Saturday 28th September
Patient & Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
and on 30th November; 25th January
Monday 4th November
Carers Group Lunch Meeting
Malta Inn, Allington Lock, Maidstone ME14 3AS, 12 noon
Saturday 16th November : Christmas Bazaar
Princes Hall, High Street, Rochester, 10am-3pm
MND Christmas Cards will be available at all November meetings
Please remember to renew (or start!) your 100 Club subscription,
ring Sue Copping on 01634 815467
Wednesday 18th September
Support Group
Wisdom Wellbeing & Therapy Centre, 10 am – 2pm
and on 2nd & 16th October; 6th & 20th November; 4th & 18th December; 15th Jan
Friday 20th September
Support Group
Heart of Kent Hospice, 10am – 2pm
and on 18th October; 15th November; 13th December; 3rd January
Saturday 28th September
Patient & Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
and on 30th November; 25th January
Monday 4th November
Carers Group Lunch Meeting
Malta Inn, Allington Lock, Maidstone ME14 3AS, 12 noon
Saturday 16th November : Christmas Bazaar
Princes Hall, High Street, Rochester, 10am-3pm
MND Christmas Cards will be available at all November meetings
Please remember to renew (or start!) your 100 Club subscription,
ring Sue Copping on 01634 815467
News for People Living with MND
AIt seems no time at all since I last wrote for Mid Kent Matters. It has certainly been a busy summer for all at Mid Kent, both on the Fundraising and Awareness/Campaigning fronts as you will see from many articles in this edition.
As always, we are grateful for your ongoing support in all our projects and events. We are all very excited about our initiative for a Support Group (replacing the facility sadly lost from the Hospice) at the Wisdom Hospice, which will be held on the first and third Wednesdays of each month. By the time that you read this, these sessions should be well underway (commencing 4th September). We hope that as many of you as possible will attend as its success depends on you and how you want it to develop. There continues to be many changes within the Health Service, the MND Association and also at Branch level. We are determined that you will all continue to be able to access the best service possible. So please do not hesitate to get in touch with me with any of your concerns or comments – both positive or negative, so that we can do our best to influence the Service Providers. |
You may be aware of a news report in July on research which linked MND and microbes in the gut. The research paper suggests that there may be a connection between MND and the Microbiome (ie the bugs that live in the gut). This link for MND has not been studied as widely as for Multiple Sclerosis, Parkinson’s or Alzheimer’s diseases but there is increasing evidence that the bacteria in the gut can play a role in a wide range of neurological conditions.
MND is thought to be caused by a combination of genetic, environmental and lifestyle factors and these new studies support the theory that the Microbiome may play a role in developing MND. This adds to an emerging but fuzzy picture of a different metabolism that seems to occur in people with MND, with diet and exercise also being studied as potential factors associated with the disease. As always, this research is only one of many research projects with which the MND Association and scientists are currently engaged. We look forward to seeing you at our various events and meetings, planned for the rest of the year. Thank you for your support Sheila. |
From the Chair
As you will read in this newsletter we continue to have had a very busy summer and I would like to thank all of you who have supported the branch in so many ways . We are so lucky to have so many committed family and friends and collectively we really do make a difference. If you feel that you have any time or skills to offer to the branch we are always ready to welcome new volunteers so please do contact me .
Annette
Annette
Treasurer's report
During the last four months we have received an amazing sum of £10001 from donations and fundraising for which we are most grateful.
We have received a total of £2380 from In Memorium receipts, and both individual and corporate donations, including £100 from the General Gordon Chapter. Our committee members and fundraisers have worked hard with the many and varied fundraising events, your help with setting up stalls, transporting and putting up the Mid Kent Branch Gazebo, refreshments and cake and plant sales, arranging and supporting at football tournaments, quiz nights and dances, quiz sheet sales, counting collection tin proceeds and monthly prize draws, has raised a massive £7553! Thank you : Footsies Dance Centre, Parkwood Social Club, Jolly Caulkers, Little Market Leybourne, Wine and Wisdom, King and Queen East Malling, POCO LOCO bar, Bearsted and Thurnham Tombola, Alicia Duff, Shambler charity Football match, Connor’s Beer Run, Jean (Quiz Sheets), Linda (Garden Cake Sale), Annette (Plant Sales), Joyce (Plant Sales), Lynne (Foreign Coins), Sue (100 Club) and not forgetting everyone who attends and supports each of the events. Our spending over the months May to August has totalled £11717, of which £7010 has been on care and £2436 on equipment. |
We have provided quality of life grants and carer’s grants and paid for therapies and treatments for people with MND and their carers. This has included help with the cost of installing a stairlift, batteries for an electric wheelchair and the purchase of pressure relief items plus other small equipment items. We have covered the maintenance, and repair costs, delivery and collection of equipment and installation and provision of lifelines and continue to provide support, therapies and counselling at the MND Support Days at the Heart of Kent Hospice. Our other expenditure has been on branch administration, including prizes for Jean’s quizzes and the 100 club winners and we have also paid for attendees to the MNDA Annual Conference and Training Day.
Our bank details for anyone wishing to donate directly or via standing order- MNDA Mid Kent Sort Code 30.96.09 Account Number : 02968567 Cheques – The cheque clearance procedures at the banks have recently changed and all cheques now clear within 1 day. It is important that the payee on the cheque reflects the name on our account and that cheques are not amended in any way. We are in the process of applying for an indemnity which will cover alternative “payee” options. (for example “MNDA” or Motor Neurone Disease Mid Kent), but it will be best if we endeavour to ensure that in future any cheque for our branch should be made payable to MNDA Mid Kent Lynne |
Bucket and Box Collections
Emilie Coleman proudly presented the branch with a very heavy bucket full of
cash and cheques that had been collected in memory of her grandmother Sheila
cash and cheques that had been collected in memory of her grandmother Sheila
Jan Murphy, the landlady of The Jolly Caulkers pub presented Joan with a cheque for £456. Jan is a friend of Tracey Toomes (one of our longterm supporters) and decided to make MND one of her pub’s charities, when she heard that one of her customers had motor neurone disease. She has taken another collecting box and will continue her support.
Wisdom Hospice Fete - And Another Plant Stall!
After the first hour the stall began to look almost (!) empty!
Drumming for the Mind
Drop-in weekly sessions at Medway Adult Education, Rochester Community Hub. Tuesdays at 11am-12.30pm. These sessions are suitable for those living with a neurological condition and their family, and friends. Come along on the day to find out more, ring 01634 338400 or discuss with your AV.
The Scrap 6 Months Campaign
Sheila and Colin outside Parliament
On the 3rd July, Volunteers from the MND Association, from across the country, attended Parliament in support of the Scrap 6 Months Campaign and to receive a report of the All Party Parliamentary Group (APPG) on Terminal Illness.
The event was jointly hosted by the MND Association, Marie Curie and the APPG, chaired by Drew Hendry MP. Clinicians and many other professionals also came to support the Campaign. The focus was on removing the Six Month Rule on life expectancy, so that benefits might be accessed quickly and replacing it with a clinical judgement made by a Health Care Professional. Drew Hendry in his address stressed the importance of understanding the stress that comes for families facing a terminal illness diagnosis and the necessity for speed in dealing with claims and well-being. Madeline Moon, MP, spoke passionately on the role of caring and the impact on Carers. She had recently lost both her mother-in-law and her husband to MND and understood completely the difficulties and the cost, both financially and physically, that caring can bring. |
Volunteers invited their MPs to attend the event but, sadly, all our local MPs were not able to accept our invitation. However, Gareth Johnson (Dartford) and Rosie Duffield (Canterbury) were in attendance and confirmed their support for the campaign.
Jeremy Vine, the Radio 2 and Channel 4 TV presenter, was also in attendance and spoke passionately in support of the Campaign. Following the 3rd July event, the All Party Parliamentary Group (APPG) on MND held their AGM on 9th July where Rosie Duffield was among the MPs who attended. On July 11th, the Work and Pensions Secretary, Amber Rudd announced a review into how the Benefits System supports people near the end of life or those with severe conditions. A Round Table event was attended by the MND Association’s Policy Manager, Alex Massey. On August 7th, a petition to scrap the 6 months rule, with 55,000 signatures was handed in to Downing Street by Dave Setters, a person living with MND. |
Medway Neuro Arts Festival
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Boat Trip Along the Medway
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We were delighted to be involved with this year’s Medway Neuro Arts Festival, organised by the Medway Neurological Network. The MNN consists of organisations that are all working with to promote the interests of people living with neurological conditions in the Medway area.
The Arts Festival was held on 20 and 21 July 2019 and showcased the work of many of these organisations, including art work, wheelchair dancing, Tai Chi workshop, a poets corner, and a dementia garden planted by people living with dementia and their carers. The Festival was launched with the support of Kelly Tolhurst, the MP for Rochester and Strood. There is no doubt that there is strength in numbers and given that many of the issues facing people living with MND are also a challenge for people living with other neurological conditions, it is really positive to be involved in events such as the Arts Festival in order to build connections with other charities and organisations who can work together to campaign on these issues. You can see more of the activities and information about the Festival on the MNN website: http://medwayneuro.org.uk Carers GroupThere is now a small but friendly group of carers and ex-carers who meet for lunch every couple of months. We usually meet at the Malta Inn as it’s a fairly central. If you would like to join us we would be delighted to see you. Our next meeting is on Monday 4th November - if you would like to find out more please phone Sue Copping on 01634 815467.
Odd Coins Make Money
I am still collecting any Foreign Currency (in or out of circulation) and any old British Currency (notes and coins).
According to the Royal Mint only £24 million old £1 coins have been returned to them with £145 million still in circulation. I can pay these in directly to the bank without having to exchange them so if anyone has the odd one floating around at home, in pockets, down the back of the sofa, etc, then pass them on and I will be happy to take them to the bank. Feel free to contact me if you have any coins for collection (01732 845278) or pass the coins to an AV or committee member. Lynne |
On the only good day in a week of torrential rain 11 people enjoyed a trip along the Medway river on the Kingfisher river boat. Although fully adapted to take wheelchairs we found to our cost that this does not always work as the river was so swollen we could not get the ramps up to the boat. Sadly this meant that Sally could not board but we have reserved her a place for next year. Without rubbing salt into the wounds – we had a lovely day meandering up and down the river with a buffet lunch and spot of fizz at midday. The highlight has to be the Kingfisher which flew in front of the boat for several seconds ( whilst Yvonne was in the loo and missed it!) It was a lovely day and now we know how it works we will book a couple of trips next year. Annette
Kingfisher River Boat Trip Along the Medway
MNDA 40th Anniversary Event
With volunteers from across the UK, Joyce and I attended the 40th anniversary event at Boughton House in Northamptonshire on 21st June. It was another hot day and there was a full programme, so some of us were wilting by the end of it! After coffee and a welcome by our host the Duke of Buccleuch (as he admitted a difficult name to pronounce!), we were divided into three groups. In turn, we attended a session on MND research by Prof. Ammar Al-Chalabi, enjoyed a short tour of some of the private parts of the house and a whistle-stop tour of the gardens before enjoying Afternoon Tea in the relative cool of a marquee on the lawns at the side of the house.
The first of the afternoon’s presentations was by the small group which formed in 1979 as a way of supporting people and families affected by MND, and which grew into the Association we know today. They were followed by Brian Dickie, our long serving Director of Research Development, who addressed “The Future” and members of the late Professor Steven Hawking’s family “In conversation with …”. So ended a day which had been begun badly with road works and diversions, but which was useful and informative, and which took place in splendid weather in a wonderful setting. Jean |
Football Match at Maidstone United FC
On Sunday 14th July it seemed that every 18 - 25 year old descended on Maidstone United's home ground, The Gallagher Stadium, for a friendly but fiercely fought football match between ex (and some current ) pupils from Maidstone Grammar School and Oakwood Park Grammar School.
The football match was being played in memory of Terry Shambler -a fellow pupil and dear friend. Terry was aged 18 years when he was killed in an accident whilst on holiday in Cyprus on 18th July 2014. He attended Maidstone Grammar School (MGS) and had just finished his A levels when he and his friends had gone to Cyprus. His friends organised the match, bringing together people he knew from both MGS and Oakwood Park. Terry’s youngest brother Oliver who still attends MGS also played in the match. The game was end to end but we won't talk about the score - suffice to say it was a pleasure to be surrounded by so many delightful young people.
These young people chose MND as the recipient charity for the event as Terry’s grandfather has this condition and we are very grateful for their support. The event raised a magnificent £1501.28p in cash on the day and over £500 more on their “Just Giving” site. Thank you lads we will make sure this money helps to make a difference - just as you did.
Annette
The football match was being played in memory of Terry Shambler -a fellow pupil and dear friend. Terry was aged 18 years when he was killed in an accident whilst on holiday in Cyprus on 18th July 2014. He attended Maidstone Grammar School (MGS) and had just finished his A levels when he and his friends had gone to Cyprus. His friends organised the match, bringing together people he knew from both MGS and Oakwood Park. Terry’s youngest brother Oliver who still attends MGS also played in the match. The game was end to end but we won't talk about the score - suffice to say it was a pleasure to be surrounded by so many delightful young people.
These young people chose MND as the recipient charity for the event as Terry’s grandfather has this condition and we are very grateful for their support. The event raised a magnificent £1501.28p in cash on the day and over £500 more on their “Just Giving” site. Thank you lads we will make sure this money helps to make a difference - just as you did.
Annette
The match was played in memory of Terry Shambler at the Gallagher Stadium, Maidstone
Volunteers Week in the Pentagon, Chatham
Dave getting ready for a HANDY session of Pat Ball at our stall in Volunteers Week. The theme of the week was HELPING HANDS as well as the game, visitors were invited to draw around their hand and write a thoughtful sentence. The session gave us another opportunity to meet and talk with volunteers from other organisations.
Presentation at Patient and Carers Meeting
Jonathon and Sally presented Sheila with a cheque for £200 at a Patient & Carers meeting – the result of a successful Plant Sale held by his Mum in Sittingborne
Medway Neuro Arts Festival
Eastgate House gardens in the sunshine was enjoyed by all (above). The Town Crier posed with Sheila and Sam while Linda, Ellie and Sheila sheltered from the sun and waited for their next visitors.
Borstal Church Fete
Joyce and Jean had a good day – not too hot!- selling plants to anyone who walked by their table. Most of the customers lived in the village and several plants have since been seen in their new locations.
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100 Club Winners
June 2019 58 : Sally Doherty 73 : Zara Diffard |
Bearsted Fayre
The fayre was a success on Saturday. I have enclosed a few picture for MKM, Lin and I ran the tombola stall with help from my son and his girlfriend Carl and Kirsty.
Dave Sheridan put the gazebo up for us before the event and popped back in the afternoon to help with the Tombola and taking the gazebo down again. Lin's daughter Faith (and friends) also helped with ticket folding and counting the takings! It was a really hot day as you will recall however we had a lovely shady spot and were kept really busy all day from around 12pm until 6pm when we left! We also had some books on the stall that we sold for donations. We made a fabulous £330.60 with £20 of that coming from the books. Lynne |
Brisk business in a vital shady spot at the Mid Kent Tombola
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All At Sea
Judging by the number of all correct solutions I have received I gave this sheet the wrong title! In case anyone hasn’t had a guided tour of the Cutty Sark and is still puzzled by no. 48, “ a short shift” or it’s wearer is the dictionary definition of “cutty-sark”!
The answers are:-
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26. Prawn 27. Barracuda 28. Minnow 29. Plankton 30. Stickleback 31. Tench 32. Pike 33. Oyster 34. Lamprey 35. Porpoise 36. Golden Hinde 37. Lusitania 38. Mary Rose 39. Morning Cloud 40. Discovery 41. Hispaniola 42. Beagle 43. Bounty 44. Bismark 45. Dreadnought 46. Endurance 47. Titanic 48. Cutty Sark 49. Mary Celeste 50. Black Dog 51. Temeraire 52. Victory 53. Great Britain 54. Ark Royal Herbs & Spices will be the next problems! |
Walk to D'Feet In Memory of Brenda Sheridan - September 2019
It was a sunny morning at Shorne Country Park on the first day of September and Dave had single-handedly erected the gazebo before most people arrived – he should have a medal too! Over Fifty people, of all ages and uncounted dogs set off just after 10 o’clock – most of them pictured above. While they were away, Annette, Amy and Jean manned the “shop” and sold several Tombola tickets. Several of the walkers wore orange or blue tutus and were aflicted with blue and orange legs, but it didn’t stop them finishing and collecting the medals specially made for the event by Dot.
Wine & Wisdom - 1st June 2019
Concentration for all the teams seems to be the order of the day …
and for the winners it paid off!
EASY FUNDRAISING
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Don’t forget, we’ve registered with Easyfundraising and have already raised £65 for the branch. It’s a great site where you can help Motor Neurone Disease - Mid Kent Branch raise funds simply by doing your everyday online shopping!
Over 3,600 big name retailers are included, such as Amazon, Argos, John Lewis, ASOS, eBay, Boden and M&S. Every time you shop, we receive a small donation to say ‘thank you!’ It’s completely free and over £27M has been raised for causes just like us so far. We want to raise as much as possible so please sign up and help us at https://www.easyfundraising.org.uk/causes/mndmidkent/ or https://www.easyfundraising.org.uk/invite/7H3TVZ/VT9CIE/ |
USEFUL INFORMATION
Motor Neurone Disease (MND) is the name given to a group of related, but widely varying, diseases affecting the motor neurones in the brain and spinal cord. Motor neurones are the nerve cells that control muscles; hence their degeneration causes weakness and muscle wasting.
MND is usually regarded as progressive but the rate of progression varies greatly from person to person and between the three main types of disease. In the UK it is believed that there are about 6,000 people suffering from MND at any one time.
BEFORE YOU SPEND MONEY ON A PIECE OF EQUIPMENT, CHECK WITH THE APPROPRIATE PROFESSIONAL. IF IT IS SOMETHING THEY DO NOT PROVIDE, SPEAK TO YOUR ASSOCIATION VISITOR OR SHEILA THOMPSON (01634 723677).
WE MAY BE ABLE TO HELP YOU.
Mid Kent Branch covers the ME postcode area except ME13, and includes DA11-13
Meeting place : The Wisdom Wellbeing & Therapy Centre, High Bank, Rochester.
Branch web address - www.midkentmnd.org.uk
OFFICERS
PRESIDENT: Professor David Oliver
VICE PRESIDENT: Mr Colin Thompson, 01634 723677 colinwthompson@btopenworld.com
CHAIRMAN : Miss Annette Scott, 01622 820719 annette.scott4@btinternet.com
PATIENT CARE : Mrs Sheila Thompson, 01634 723677 sheilaathompson@btinternet.com
SECRETARY : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
TREASURER : Mrs Lynne Eldred, 01732 845278 lynneeldred@hotmail.com
LOCAL CONTACT : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
FUND RAISING : TBA
MKM : Miss Jean Lear, 01634 404378 jeanlear@btinternet.com
MND CONNECT : 0808 8026262
MND is usually regarded as progressive but the rate of progression varies greatly from person to person and between the three main types of disease. In the UK it is believed that there are about 6,000 people suffering from MND at any one time.
BEFORE YOU SPEND MONEY ON A PIECE OF EQUIPMENT, CHECK WITH THE APPROPRIATE PROFESSIONAL. IF IT IS SOMETHING THEY DO NOT PROVIDE, SPEAK TO YOUR ASSOCIATION VISITOR OR SHEILA THOMPSON (01634 723677).
WE MAY BE ABLE TO HELP YOU.
Mid Kent Branch covers the ME postcode area except ME13, and includes DA11-13
Meeting place : The Wisdom Wellbeing & Therapy Centre, High Bank, Rochester.
Branch web address - www.midkentmnd.org.uk
OFFICERS
PRESIDENT: Professor David Oliver
VICE PRESIDENT: Mr Colin Thompson, 01634 723677 colinwthompson@btopenworld.com
CHAIRMAN : Miss Annette Scott, 01622 820719 annette.scott4@btinternet.com
PATIENT CARE : Mrs Sheila Thompson, 01634 723677 sheilaathompson@btinternet.com
SECRETARY : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
TREASURER : Mrs Lynne Eldred, 01732 845278 lynneeldred@hotmail.com
LOCAL CONTACT : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
FUND RAISING : TBA
MKM : Miss Jean Lear, 01634 404378 jeanlear@btinternet.com
MND CONNECT : 0808 8026262
Motor Neurone Disease Association
Registered Charity Number 294354. Registered in England.
Company Limited by Guarantee No 2007023
Registered Charity Number 294354. Registered in England.
Company Limited by Guarantee No 2007023
