The Lifeboat April 2014
South & West Cornwall Branch Monthly Magazine
Cover Picture
South & West Cornwall Branch represented by the Young MS and friends and the youth group at the crashbox and classic car club event at the Tregenna Castle Hotel
at Inside the Lifebo this month MS News
Page 11&12 This article was sent in by Jan Barton
Page 3 NICE issue initial negative review on new MS treatment, Tecfidera MS nurses to be discussed in House of Lords Page 4
Report says PIP backlogs have led to delays and uncertainty
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Would you like to get involved in shaping the future of a research project – the SWIMS Project? South & West Cornwall Branch Photography competition
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From Mary Smiths blog Sent in by Susan Creese Laona’s page
Page 7 Page 8
Alternative front cover
Get Loud & Proud in MS Week! Your feedback on what activities you want in your area
Page 9/10 Quiz page 1
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How is your magazine produced? How does the voucher scheme work Thought of the month
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Read-A-Thon news
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Cabaret evening - Tregenna Castle Sent in by Wendy Hughes, Part one of two
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Youth group
Page 17
Young MS and Friends
Page 18
Events
Page 19
Information page
Chairman’s Report Hi everyone, Firstly Jasper made me laugh last month with the picture of me In that stew pot. There is exciting news with Truro camera club working with this branch to pilot an idea of mine called 'Snap or tunity'. It is a novel idea for a photographic competition Read the rules later in the magazine.
Our committee has a new member with Paul joining Richards SUPPORT TEAM. Paul has MS and will act as a person who is going to set up discussion group to share MS. So watch this space. Finally I would like to remind you that my big garage sale is on the 26th of the month with our dynamic duo Amanda and Richard running our Bingo evening on Thursday the 26th at Chacewater , so please come along.
Mike Editors Note Hello everyone, The months seem to fly By these days, but hey its spring and still raining so some things remain constant. There are lots of things going on this year, I have put together a years activity programme (page 18) for you to take part in. And if you respond to my request for your thoughts there could be more. I must thank all those who send in material for the magazine, it makes it much more interesting to have your input. One of my pet issues is that of awareness in our communities, What’s so good about MS awareness? Awareness of MS, in my view, has several distinct advantages: 1. An understanding of the condition called Multiple sclerosis 2. An understanding of the charity and its aims 3. An understanding of the problems that people who are affected by the condition have to endure 4. Awareness in schools so that young people can have knowledge and understanding. These are the volunteers of the future.
6.The more people that are of aware and understand MS the easier it will be to recruit volunteers. 7.The results of awareness bring in funds, the more people know about us, the more likely they are to donate funds. So that it in a nutshell, what can we do to increase our awareness in South and West Cornwall, here are a few suggestions: 1. Start a South and West Cornwall awareness group who can work on increasing awareness in our area. 2. By word of mouth and the distribution of literature, we can provide brochures and information about our branch. 3. Hold public seminars. Does the idea of becoming a member of a South & West Cornwall Branch awareness group sound good to you? If you are interested contact me and we can work out a plan. Geographic location is not a problem, we can have groups working in different parts of our area. Lastly, if you intend to attend our functions please let me know in good time, often venues need numbers in good time before The event. Thank you for your support, have a great Easter. Malcolm
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News from the MS National Centre NICE issue initial negative review on new MS treatment, Tecfidera NICE have said they’re ‘minded to say no’ to allowing the new oral MS drug dimethyl fumarate (Tecfidera) to be freely available on the NHS in England and Wales for people with relapsing remitting MS. The drug was licensed earlier this month to treat people with relapsing remitting MS. The pill is taken twice a day and is proven to cut relapse rates and may also delay disability progression. NICE consultation NICE are now welcoming feedback on their initial decision from patient groups, healthcare professionals and others. We will be offering our feedback and encouraging NICE to reverse their negative decision; people with MS can also independently offer feedback. The pharmaceutical company making the drug have also been asked to provide further evidence. Safe and effective treatment Without NICE approval, the treatment will be hard for people to get. Nick Rijke, Director of Policy and Research at the MS Society, said: “This initial decision is disappointing news, but we’ve been here before for other MS treatments and seen the NICE decision overturned, so we’re hopeful to see a repeat of that. This treatment is proven to be safe and effective in treating MS and we’re appealing to NICE to make it freely available on the NHS.”
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Four new MS drugs Dimethyl fumarate is one of three treatments for RRMS currently going through European licensing and the NICE appraisal process. A further treatment, Aubagio, was licensed and finally NICE approved in January this year – even after NICE issued an initial negative decision. The other two medicines are alemtuzumab, a licensed treatment given byinfusion, for which the NICE final decision is expected in the next few months and laquinimod – another MS pill, which will hopefully be licensed and reviewed by NICE later this year. MS nurses to be discussed in House of Lords MS nurse provision in the UK will be discussed in the House of Lords later – it represents an important opportunity to quiz the Government about what it is doing to ensure every person with MS has access to an MS nurse, wherever they live. A vital lifeline MS nurses are consistently cited by people with MS as the most important member of their MS health team and the person they are most likely to contact. They are at the end of a phone to provide support when people need it most, they can reduce the impact on other health services by managing first line areas of care and they can help to avoid unnecessary and costly emergency admissions. Research has recognised that the UK’s MS nurses are the most advanced in Europe: as highly trained specialists, they are strong advocates for their patients and help to enhance understanding of the condition among other clinicians. Decreasing budgets, the increasing cost of healthcare and a lack of understanding of the funds and consultant/ GP time they free up means that MS specialist nurses are at risk.
They are being asked to justify their post; hours are being reduced; posts are under review; services are being diluted and some are being cut altogether. Any decision to cut back on MS specialist nurse posts will inevitably have long-term implications on standards of care. Campaigning for MS Nurse posts The debate this afternoon has been tabled by the Vice Chair of the Parliamentary Group for MS, Lord Dubs, who has long called for MS nurses to be maintained, invested in and supported: “People without access to an MS nurse are at risk of missing out on a whole range of medical and support services – all people with MS should have fair and equal access to an MS specialist nurse to meet their needs.” We know that access to an MS nurse varies around the UK, and that existing posts are under threat due to financial pressures on the health service. The MS Society launched a ‘Save MS nurses’ campaign in 2012, which calls for: • Recognising MS specialist nurses as an integral part of MS service provision and should be funded and provided through statutory healthcare services • All people with MS to have fair and equal access to a dedicated MS specialist nurse to meet their specific needs • More MS specialist nurses to be available to ensure a manageable caseload for each nurse and to help them cope with the demand for this service. Report says PIP backlogs have led to delays and uncertainty A report out today by the National Audit Office says backlogs in the assessment process for Personal Independence Payment (PIP) have led to delays and uncertainty for claimants. The Department for Work and Pensions introduced PIP in a small number of areas in April 2013 – by October, 166,000 people had started new claims for PIP.
PIP is replacing the Disability Living Allowance for working age people and supports disabled people with daily living and mobility costs. The National Audit Office says the DWP used a phased roll out to reduce the risks in the programme – but it left little time to test whether it could handle a large volume of claims. Backlogs soon developed and by October 2013, 92,000 people had outstanding claims with assessment providers Atos and Capita – almost three times the number the DWP had expected. Claimants are facing long delays The spending watchdog says it means claimants are now facing long delays to benefit decisions. People aren’t being told how long they might have to wait and that’s “creating distress and financial difficulties.” In October the DWP postponed to reassessment of many DLA claims and announced that they would be phased in by postcode area, based on the capacity of the two providers. Extreme financial hardship Claire Nurden is Senior Policy and Campaigns Officer at the MS Society and Co-Chair of the Disability Benefits Consortium: “The NAO’s report confirms what people across the country have been telling the DBC - that the Government failed to properly consider the impact its reforms would have on disabled people. This has resulted in unexpected costs and extreme financial hardship for those affected. “It is nonsensical to press on with the roll-out of PIP before the system is fit for purpose. The government must urgently halt the reassessment of DLA claimants to reduce pressure on the system and put plans in place to support those enduring delays to their claim.” The NAO is now recommending that the DWP should set out a clear plan for informing claimants about the delays they could face; while also working with providers to improve performance. 4
Would you like to get involved in shaping the future of a research project – the SWIMS Project?
It is likely that we will be looking at general issues in spring 2014 and more specific matters later in the year.
SWIMS - the South West Impact of Multiple Sclerosis Project. - is a study of MS (and clinically isolated syndromes) run by Professor John Zajicek at the Plymouth University Schools of Medicine and Dentistry. The study, which aims to understand disease impact from the patient perspective, has been running since 2004 with over 1600 participants. We are reviewing progress made so far and considering the project’s future direction. We want to recruit volunteers to help us decide on the future development of the SWIMS study and this could be anyone – someone who has MS, or friends or family of someone with MS. Why do we need your help? Firstly, we need your help to identify what is important to people with MS. This might involve prioritising certain research questions and/or contributing your own ideas of what is important.
If you are interested in finding out more, or if you would like to join our pool of volunteers, please contact us. Ring the SWIMS team on FREEPHONE 0800 015 3430 or 01752 315246 Email us at swimsproject@plymouth.ac.uk Write to: SWIMS Co-ordinating Office, N16, ITTC Building, Plymouth Science Park, Plymouth, PL6 8BX For more information about SWIMS visit our website: http://research.psmd.plymouth.ac.uk/ cnrg/swims.php
Secondly, we would like your advice on practical issues – for example, how we can make booklets easier to fill in; designing different questionnaire booklets for those who are newly diagnosed with MS or asking your opinion about attending research clinics. What would you be expected to do? To begin with we will make a list of people who might be interested in helping us. We will need a pool of people with different experiences of MS. You decide how much time you are prepared to give, and which aspects you are interested in. We will then contact people in the ‘pool’ to ask for opinions on certain topics. You can choose whether to respond by post, email, online, or you may like to join a discussion group. You can also choose not to respond; we know that the unpredictability of MS means individual circumstances may change 5 day-to-day.
South & West Cornwall Branch Photography competition This is Mike Georges project, to start a 'Snap or tunity' photo competition. Your chance to get your Photos in the limelight. Read the competition rules and contact Mike George if you are interested in taking part. Competition Rules 1. The Competition shall be open to all branch members 2 The picture can be taken on any device that produces a digital image 3 The image must be made by the entrant and must be original. It may not incorporate elements produced by anyone else. The photographer must own the copyright of the picture. The MS Society assumes no liability for any breach of copyright by the entrant. 4. The MS Society reserves the right to reproduce the images for publicity. Reproduction will be without payment and copyright remains with the photographer.
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Every possible care will be taken with entries but the organisers cannot accept liability for loss or damage to work submitted. 6. The digital image files must be titled as described in the competition digital image entry rules 7. Members may not enter a digital image of the same or substantially similar content to any image previously entered by them into the MS Society photography competition. 8. Trophies and prizes shall be awarded based on the judging of three independent judges 9. The elected Officers shall deal with any disputes. 10. Digital image entry rules are supplied on a separate sheet. There is no digital image entry form. 11. Entries not conforming to these rules may be disqualified. AWARDS There will be certificates for 1st, 2nd and 3rd awarded to entries in all sections. For more information call Mike George: 01872 862031 From Mary Smiths blog There is something I’ve been wanting to say for thirty years. Recently it has been preoccupying my mind. And now I shall use my blog to say it … On 26th May 1984 my Father was 70 years old. To celebrate this fact he decided to take the whole family – this is, nine adults and five children – to Paris where he put us up in a hotel for a few nights. On the second day I told my Mother that I wanted to say something at supper. I looked at her during supper and she held something in her hand and was looking at me as though she were about to call order and bang her lighter on the wine bottle. At that moment my whole mind seized up and I panicked and felt I couldn’t say what I wanted to say. So I shook my head and the moment was passed. It is this moment that keeps coming back to me.
What I wanted to do was thank Dad for organising this very generous trip. At that time I hadn’t made any speeches and it was before I started my Diploma in Human Relations and Counselling Skills which gave me the confidence to become a humanist officiate. Since then I have occasionally talked at family occasions and I was an officiate at weddings and funerals for the Humanist Association. When the family got back to England I wrote Dad a warm letter thanking him but I was sorry not to have done so in front of my siblings and their children. Dad’s been dead a long time now but I’ve always been sorry I didn’t make that public announcement. Now I am doing it on my blog. Sent in by Susan Creese Stumping Up a Crutch When I was ten Reality set in The wanting of grub for sustenance Was digging up a spud When biting the bullet Was a sign of the times Me-hopes one can get P.I.P from the big apple As looking ahead is not pretty In fear of the R.I.P No love, compassion nor god given grace Government onslaught No insight, no justice, no care Leaving the underprivileged hanging in the air Losing energy, losing pace Too scared to move just in case Winning the twenty metre race (on crutches) just once With flooded tears down ones face One more step opens the gates Too not accessing foods and losing pace Pride may cometh before a fall “but do I really have to starve again fifty years on” Having won a world war race? © Susan Creese 6
Laona’s page
Well this month I am celebrating again. I have just realised that last year on the 23rd of April I posted my first recipe. Pilgrims Kitchen Tales will be one year old and although my illusions of reaching the masses might have been just a little naive and overly optimistic, I feel that I have a lot to celebrate! The aim of Pilgrims Kitchen Tales was to share my recipes with people with MS and thanks to our inspiring magazine and Malcolm, that is what I am doing. A big Thank you and hopefully we will all come up with some sponsorship ideas. A year is not so long a time but this one seems to have been and gone in a blink of an eye. My life indeed is fuller than it was. The journey Andy and I started is well under way and the inspiration keeps coming. There is also hope as although I have relapsed my body seems strong, it copes well and recovers, I really do believe the diet is helping. On the subject of diet, there are one or two confessions to be made! There are certain ingredients that have crept back in for "culinary reasons", honest! I have relaxed my stance on sugar, I am now using Rapadura sugar, this is full of flavour and sweeter, so you don't need to use as much. Surprisingly it also contains plenty of minerals and vitamins which white sugar is completely devoid of. I am also occasionally using premixed gluten free flour, mainly for breads, biscuits and some pastries as I have found the results, especially in biscuits and breads better
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than my own concoctions. And finally chocolate, well what is there to say, cacao nibs and cacao paste, although certainly healthier do not a good chocolate cake make and as it is Easter who can blame me? However imagining that you will all be eating plenty of chocolate, I am hoping to inspire you with a recipe for your Easter Lamb, hope you enjoy, Happy Easter !. Chermoula is a Moroccan spice rub, you can of course use lamb shoulder instead. Start this recipe the day before if you can. 1 half leg of lamb 1 medium onion, chopped 3 tbsp chopped coriander 3 tbsp chopped flat leaf parsley 4 cloves garlic, chopped 1 tsp ground cumin 1 tsp ground coriander 1 tsp sweet paprika 1/2 tsp chilli flakes 2 heaped tsp preserved lemon paste 5 tbsp olive oil 1/4 tsp salt For the dressing: • 75g flaked almonds • 125ml water • 3 tbsp lemon juice • 3 tbsp olive oil • salt and black pepper • • • • • • • • • • • •
Oven 220C/425F/gas 7 1. Put all the ingredients for the paste except the olive oil in a food processor and blitz until finely chopped, not too fine you still want a little texture, transfer to a bowl, then stir in the olive oil. 2. Pierce the lamb in several places to make small pockets, rub the paste over the lamb and into the pockets. cover the bowl with cling film and place in the fridge. Leave to marinade for at least 2 hours but preferably overnight.
3. Remove from the fridge and bring to room temperature. Place in a casserole dish, cover with damp greaseproof paper and then a lid. Place in the oven and immediately reduce the temperature to 140C/275F/gas 1. Cook for 3 - 4 hours, until meltingly tender. 4. For the dressing, soak the flaked almonds in the water for 30 minutes. Place in a blender and blitz until pureed. Add the lemon juice and oil and blend again, then season. 5. Serve the lamb with a dollop of dressing and my Broccoli and herb "couscous", see website.
Laona
Your feedback on what activities you want in your area
Well! your feedback has been poor to say the least. I'm afraid only one or two out of 260 members have responded. These are the requests so far: Afternoon get together's, A visit to a leisure spa Coffee mornings, Lunch Clubs, Flower arranging and Photography clubs.
Get Loud & Proud in MS Week! MS Week starts on 28 April. It is a brilliant opportunity to challenge perceptions about MS, reach out to more people affected by the condition and raise vital funds for the branch. Do you know a school, community group, church or employer that we could approach to get involved? Why not offer them a talk? Give them information about MS, MS Society and the branch? Get them involved with the Read-A-Thon, Cake Break or other fundraising.
Regular fortnightly meetings 1950’s night So come on and get communicating, it could be treatments for us to consider, social events or items of interest, the choice is yours. Are you interested in running one of these options in your local area? If so let me know and we can set something up together. I am keen on progressing the awareness of MS in our local areas so remember……….
Even if they are too busy or already committed in MS Week, they could always do something later in the year. MS Week just gives a good excuse to ask them! May be you know someone who has a particular talent, skill or some spare time that they could offer to the branch? Any Ideas? Awareness is the key to our success! Contact Malcolm Tel 01209 860754
Malcolm
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April quiz
March Quiz answers 1 2 3 4 5 6 7 8
Sharon Osborne Victoria Beckham Madonna Mary Berry Katie Price Judy Garland Debbie Reynolds Goldie Hawn
Cornish Place Names ( this quiz was one of the many quizzes my late Grandad challenged us with) 1 This saint got a letter for moving. 2 What you usually get at the fair or seaside. 3 When is a revolver not a revolver? 4 These stones show the way. 5 Is this where the Royal Engineers go absent without leave? 'A'! 6 Could be one or two bumps at this crossing. 7 This place smooth's things over for the poor farmer. 8 Scots child telling its mum it has not got the tin box.
Nikki
Can you spot the five differences? The mystery object has been too easy of late so I have increased the difficulty level.
What’s this mystery object?
Good luck with this one!!
March spot the difference 9 9
Happy birthday to: 2nd Mark Osborne 3rd Rachel Sobey 9th Vicky Richards 17th Gail Aldridge 19th Susan Bence 20th Emily Burgoyne 27th Tina Cameron 29th Rita Last
Across 1 Guaranteed (7) 5 Capture (5) 8 Makes an effort (5) 9 Southern US state (7) 10 Bright red (7) 11 Period of work (5) 12 Maiden in distress? (6) 14 Area surrounded by water (6) 18 Small and elegant (5) 20 Instrument to measure electric current (7) 22 Excess (7) 23 River nymph (5) 24 Organism causing fermentation (5) 25 Mixed (7)
April Crossword
Down 1 Lured (7) 2 Winter sports enthusiast (5) 3 Breathe (7) 4 More expensive (6) 5 Talons (5) 6 Russian empress (7) 7 Core (5) 13 Largest of the Balearic Islands (7) 15 Maigret's creator (7) 16 Mocked (7) 17 Horse-drawn cab (6) 18 Domineering (5) 19 Not illuminated (5) 21 Court case (5)
Money Boxes Target ÂŁ2,000.00 March crossword March mystery object
Actual to date ÂŁ1,200.00 A nut cracker 10
This article was sent in by Jan Barton Hi folks, I have just finished reading my second issue of The Lifeboat (March 2014), and thoroughly enjoyed it, especially Laona’s recipes, all the MS treatments & updates and that cheeky little chappy Jasper, who kept popping up like a rabbit out of a hat!. The photos of the 40’s night looked great fun and on Saturday I enjoyed a lovely roast dinner and apple crumble at The Fire and Ice cabaret evening at Tregenna Castle. Malcolm’s silky smooth voice kept us entertained, combined with vigorous balloon waving, and Ruby and Megan’s beautiful versions of some modern chart hits were a delight. Thank you so much to everyone involved in producing The Lifeboat and the organising of the social evenings, I know how much hard work goes into organising these things and it really is appreciated. I was only diagnosed with MS last September and I am fortunate, in that my symptoms are relatively mild. The possibility that my nervous system was damaged was first raised a decade ago in my early forties, and so last year’s news came as no surprise. My diagnoses followed many years of battling mental health issues having been retired on health grounds from Kent Constabulary after fifteen years of service, in February 1994. Depression was cited by the police service and I certainly was depressed after struggling to save my career with little or no support or understanding? I had served in all the departments in the force including being a village bobby on a 200cc Kawasaki motor cycle, a tutor constable training several new 11 officers, an acting sergeant in charge
of the entire station on some shifts and a sub divisional fast action response vehicle driver, in both cars and 800cc BMW motor cycles on the traffic section. Having joined in 1978, women like me were the ground breakers for women in the modern police service and equal rights may have been law, but attitudes were still very entrenched. The miner’s strike of the 80’s did for police women what world war two had done for women’s rights nationally. As the service was still nervous about training and putting women on the front line in riot and dispute situations, the women officers were left to uphold the law at home while the men were sent to Wales and Yorkshire to man the picket lines. Effectively this meant, women police officers worked 12hour shifts with many rest days cancelled and collecting horrendous amounts of paperwork that the guys passed onto them as they were frequently whisked away up country for weeks at a time? In addition of course it meant that when it came to all the violent nasty stuff, it was primarily women officers dealing with it all….personally I would rather have been on the picket line earning lots of overtime? A year of this, a dreadful house fire where a baby and two young brothers perished, two 12 hour shifts manning telephones immediately following the major incidents of the sinking of the Herald of Free Enterprise in Zeebrugger and the IRA bombing of the Marines army barracks in Deal, in the first ever casualty bureaus set up by any police service in this country, and is it any wonder Kent police felt the need to round up its officers and alert them to the first signs of work related stress? Stress, reactive depression, depression and post-traumatic stress, in my last three years on and off work, fighting for my career and my health, I was given all of these labels. In the end I would be relieved if a situation would turn physically violent as I coped better with a good scrap than having people in my face shouting at me,
which set my nerves on edge and hurt more than a smack in the mouth did! Now I know that links between stress and MS have not been proven, but I cannot help but think that what I have described above is unlikely to be good for anyone’s central nervous system. Thankfully, with the help of Bupa, I was given specialist help to recover at a clinic in Sevenoaks after my retirement. I moved my life down to Cornwall in July 1997 as part of my rehabilitation, having basically lost all of my 30's to ill health. It has been the right move for me and I now consider Cornwall as my much loved home. I have worked as a self-employed semi-professional hockey coach between 1995 and 2002, a motor cycle instructor until 2009 and in November 2010 qualified as a car driving instructor, after being told to, get on and do things I wanted to do, following an MRI scan and lumbar puncture in 2007, that showed my nerves were damaged but not enough to diagnose MS. I upgraded my qualification to a Fleet driver trainer with an advanced instructor’s qualification last year, but sadly have ceased my instructional work since my diagnoses as I now feel the need to protect my CNS as much as possible. It was the increased tingling in my skull, the numbness in my left foot and my tendency to trip and fall out of the blue that lead me to revisit my GP last year, especially after nearly ending up in the harbour, having fallen getting out of a gig boat. A further MRI showed that, although still mild, my CNS was damaged more than in 2007 and my diagnosis followed. I try to always look on the bright side of life folks, as I’m sure many of you do, it is a great coping mechanism. If I stumble or trip, I am usually the first to laugh and brush it off with a joke and at one time the standing joke at my gig club was that “Jan’s drunk again!” as they picked me up and dusted me off.
Over the last four years I have competed in two World Pilot Gig Championships in the Scillies, rowed the 22 miles along the Thames in the Great London River Race, rowed in a Swedish lifeboat in a race at the Swedish Island of Styrso and am now aiming to visit every Olympic Gold post box in Great Britain. I spent November 2013 touring in my Romahome in Wales, Derbyshire, Norfolk and Suffolk and collected photos at 15 of the 110 boxes. Each visit celebrated with a coffee and cake. I am starting my 5th season as a castle guide at St Michael’s Mount soon and will continue to climb that mountain daily, slowly and carefully of course, for as long as I am able. I hope I get to meet some of you at the events we are lucky enough to have organised for us and I hope that by introducing me to you, you will feel happy to come and chat to me in the future. I look forward to making new friends through the MS society. Thank you for reading my story.
Jan Barton Thanks for the article Jan and welcome to the family of the South & West Cornwall branch of the MS society.
Malcolm Jan seems very nice especially after my previous experiences with the law, namely that ex magistrate Mike George. I wonder what he will come up with next, rabbit kebab I expect. Having escaped the pot in last months magazine, which only made him laugh, I will have to think of some other dastardly deeds, although! he has been kind to me in this magazine, I wonder what he wants. Watch this space, it can’t last, I will wait for the next onslaught of sarky comments.
Jasper
Oh dear I’ve lost my carrot
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How is your magazine produced?
Thought of the month
I thank you for the positive comments that you often express about our magazine. On many occasions I get questions on who are the team that produces the magazine, so I thought it would be a good idea to tell you how it works.
April Well, if you remember, last month I mentioned giving up chocolate for Lent. I failed! Sorry everybody, I’m afraid I fell at the first hurdle. Those of you who shared our table at the Tregenna Castle last month will vouch for that – WHAT - TWO chocolate after-dinner mints??! Wasn’t that a good evening? Thanks from us all to Malcolm and everybody else who made it such a success. So, what can we look forward to in April? Easter Day. That’s the main event in our household at this time of year. A time to reflect on the real meaning of Easter. Before that of course there’s Good Friday – the one day of the year for eating Hot Cross Buns – when we celebrate Christ dying on a cross. Yes, we can celebrate that because of what Christians believe happened on the third day, Easter Day – the day for new beginnings - when He conquered death. So I can really enjoy my Easter egg. But there are other special dates: 23rd for example is St George’s Day. I never used to remember that date but since 1986 it has stuck in my mind as the day my mum passed away. Even after all this time it still comes to remind me, every time I see a St George’s flag flying. 28 years on, I can’t be sad, just happy that she left me so many happy memories. I guess a lot of you will have special days like that throughout the year, so my thoughts this month are with you and I hope you can remember the good times too.
To start with there is no team, I produce, edit and send the magazine out including sticking the address labels and stamps on the envelops. However, as you know by reading the magazine there is a team of people out there sending regular articles and material in. I take all this information plus my own input and create the magazine in Microsoft Publisher. From there I create a PDF and send it to our printer. The rest is easy, when they are ready I pick them up, put them in the envelops, label and stamp them and take them to the post office. This process takes several hours per week but for the communication value alone it has to be worth it. I must thank all those who contribute articles for the magazine, you all do a great job and that’s makes it our magazine and not my magazine. How does the voucher scheme work Each of our members are untitled to receive £200’s worth of vouchers per year, £100’s in £10.00 vouchers are issued every 6 months. The vouchers can be used to assist with the cost of treatments and therapies but can only be used with participating professionals that we have negotiated with and who have agreed to accept the vouchers as payment. For more information please contact Chris Sargent our voucher officer Tel: 01209 315386 5 13
HAPPY EASTER
Ros
Information Read-A-Thon news I am currently waiting for a couple of schools to finalise their sponsor money before I can evaluate this round. I should be able to publish some results in our May magazine. Elsa Barker-Brown is one of our strongest Read-A-Thon supporters but Elsa has not been very well lately, so Elsa, we wish you a speedy recovery and look forward to your return when you are better. I did ask our youth group what they thought of the Read-A-Thon, these are the replies straight from the horses mouth: Lauren (age 9) I think the Read-A-Thon is a good idea because it inspires young people to read. It is a good way to fundraise for charities and is fun and a good way to teach people to read. It also helps young people learn to read and write and helps children recognise difficult and easy words. It helps them use the proper use of grammar and spelling, while fundraising. The Read-A-Thon is also a good idea because it makes little charities like Multiple Sclerosis better known and more people might help us. Another great thing about the Read-A-Thon is that it will get young children and adults that don't usually read into reading and it will show those people that didn't read what they have missed. Jamie (age 12) I think that a Read-A-Thon is good because it raises awareness for the charity or charities it is raising money for. A Read-A-Thon is also good because it can raise loads of awareness for a charity that is not that well known like MS.
Another good thing about a Read-A-Thon is that it is a good way of getting children and adults that don't usually read into reading. Also it can be an enjoyable way of raising money and awareness for charities. Another reason is that it can help people of all ages with their reading and writing. Ben (age 9) The Read-A-Thon is good because it raises money to help people with MS. I think it also helps us to read more books than we would usually do. Some people don't know about Multiple Sclerosis, so the Read-A-Thon lets these people know more because we tell them about MS when we ask for sponsors. I don't usually read very much, but I enjoy raising money for our branch, so I will read more now. Megan (age 13) I think the MS Read-A-Thon is good because it raises money for a charity that more people should know about. This money then goes on to help families and people effected by MS get back on their feet and will help them to get therapy sessions that will in some situations help them improve. Another reason the Read-A-Thon is good is that it helps to raise awareness about MS, meaning that when people are diagnosed they'll know that there are people they can talk to and get help from if they need it. Meaning that they may feel more confident in knowing that people are there to help. Jasper (age - ageless) I think that the Read-A-Thon is beneficial to students, parents and schools. Encouraging young people to read and, at the same time getting family involvement has to be good for the student, school and the community. For the MS society, awareness in young people is paramount with the funds raised being the icing on the cake.
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Cabaret evening - Tregenna Castle
Sent in by Wendy Hughes, Part one of two
A great evening at the Cabaret, 90 people came which made the atmosphere all the better. Sorry about the balloons and party poppers Nicki but they just had to be done. It was a real family and friends evening and everyone enjoyed our guest artists Ruby and Megan.
The committee experience This used to be a kitchen Just look at all this mess There’s blackened cake crumbs everywhere I’m really not impressed
Can you guess who is hiding behind the red balloon in the middle picture? He is either shy or the tax man is after him. I hope our new members from the west area enjoyed their evening, look out for the next one!! Thank you all for making it a great evening.
I’m well aware who’s fault this is (I must be getting soft) They said I volunteered for it I’m sure that I just coughed! No– the committee are to blame you see We met up in December To discuss several dates ahead Now THAT I do remember I couldn’t be at parents Eve Still at work you see ‘That’s fine’ they said, don’t fret my dear Just bake some cakes for tea Of course I smiled, What would you like Victoria sponge OK? That’s the ticket they agreed I was to rue that day So– the event drew nearer I planned a baking night I know I was getting tired But I am sure I weighed out right… O.K., I didn’t Flour the tins One doesn’t need to any more And the sponge just kept on rising But when I poked it, it was raw Well, over an hour later The cake came off the rack Yes– well done in the middle But edges slightly black The time was nearing 10 o, clock As the next batch of cakes went in I planned that they’d be fairies But they came out chocolate thin Part 2 next month
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South Cornwall branch MS Youth Group West “Making Sense”
Youth group go bowling On Thursday 27th February Auntie Nikki took the youth group to country skittles for the evening. It was a bit difficult to find but once we were there we played skittles against each other as we couldn't decide on teams. I rolled the ball over the rope instead of under it and I think all of us managed to roll the ball into the gutter where we got no score. Auntie Nikki was the winner, but we all think she cheated!! Megan came second, Jamie third and me and Ben equal fourth. After the game we played pop-up-pirate, Megan was the only person who didn't make him pop! He was a bit scary when he popped and made us all jump. On our way home we went to Mac Donald's and had tea. Auntie Nikki dropped us all home and then she went home for a bit of peace.( we weren't really that noisy!)
We had a great Night!!! Thanks Malcolm for organising it and Auntie Nikki for taking us. Lauren (age9). Well done Lauren, I can see that my setting an example has paid off. You have obviously gained the benefit of my superior intelligence in the written word. I don’t like the idea of Auntie Nikki Cheating something will have to be done! Let me know what action you want me to take and I will make the necessary arrangements.
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Young MS and Friends Group Hello everyone, I am so pleased to have the opportunity to contribute to the Lifeboat Magazine as part of the new Young MS and Friends Group. The MS Society and the work Alex and Malcolm have been doing to set up the group was brought to my attention last November by the wonderful staff at Marie Therese House at St Michael’s Hospital in Hayle. At the time, I was an inpatient in the neuro-rehabilitation facility following a MS relapse and I was feeling very nervous about the future. I was so pleased to meet with Alex, Malcolm and Lauren when I was back on my feet again to hear about all the positive work they had planned for the group and the MS Society. This March was the second meet up of the Young MS and Friends Group. We had great weather and enjoyed a long chat over lunch and a walk on the beach. With the NHS services in Cornwall already stretched for people with MS, I feel so fortunate to have Alex for peer support and to talk to about MS and we have both been able to share experiences together. I am due to change treatments soon from Rebif (Beta-Interferon) to Gilenya and I have really valued Alex’s experience and knowledge when I was making my decision about treatment change. For these reasons, I have already gained so much from joining the group and meeting someone of a similar age with MS. The group is still new and developing and we would be so happy to hear from anyone else out there who would like to get involved. Hopefully by now, the poster for the group should be in many of the GP surgeries in Cornwall.
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Hopefully by now, the poster for the group should be in many of the GP surgeries in Cornwall. We are hoping that GPs and nurses can signpost the poster for the group and our contact details to any young people who would like to benefit from the support, friendship and activities we can offer! Outside of the group, I work as a Speech and Language Therapist with children of all ages in some clinics and schools around Cornwall, so I am usually kept very busy throughout the week! I am originally from Northern Ireland and I was diagnosed with MS in 2012 whilst I was at University in Plymouth. I am relatively new to Cornwall now, having only moved here in September 2013. The Cornish people I have met so far have all been so welcoming and I am looking forward to furthering my career here! I have really enjoyed having chilled out meetings with Malcolm and Alex outside of work to plan new events for the group and the MS society; the group has been a real chance to talk about things on my mind and maintain a positive outlook to living with MS and I am looking forward to the future group meetings.
Laura You can contact the Young MS and Friends group: Telephone: 07710585556 Email: ymsgsouthandwestcornwall@mail.com
South & West Cornwall Branch events 2014 All members are welcome to these activities wherever they are held, members from other branches are also welcome. 5th April - A Craft Fayre is to be held at The Ord Statter in Mylor Bridge on April 5th from 10am - 2pm. 26th April - garage sale at Mike Georges Items needed for the sale, if you have anything we can sell give Mike a ring. 01872 862031 17th May - Get together Carnon Inn, Carnon Downs, 11am till 2pm with buffet provided. Come and be spoilt by having your nails painted or join in the quiz. Avon rep Paula Robins will be there to paint your nails. Its free so bring the family and have a great afternoon. 28th June - 1940’s night at Perran-ar-worthal Village Hall. £5.00 with a evening Buffet. For tickets call Malcolm. 01209 860754 July ? get together west area, any ideas for a venue, let me know.. Malcolm August - Your choice, what would you like to do? Call me.. Malcolm 01209 860754 20th September 1950/60’s night at Perran-ar-worthal Village Hall. Live 50/60’s music from Fire ‘n’ Ice plus an evening buffet. Tickets £6.00. For more information and tickets call Malcolm 01209 860754
27th September - Concert at Beacon Village Hall by Marion Burch’s trio called Three’s Company, joined by that popular singing group Proper Job. Details to follow 11th October - Get together at the Carnon Inn. Details of activities to follow. November - Get Together in West, possibly at the Old Quay house in Hayle. Details to follow December Christmas lunch The next carers meeting will be on Thurs. 17th of April at Trevaskis Farm Restaurant near Hayle. This venue has been especially chosen so that carers from the West of the County would find it easier to come to. So far we have not heard from any carer at all apart from one in Newquay. After this venue I have to re-apply for a further grant and I need people to notify me within the next month as to what they as carers would like to spend the next £750.00 on for them, I have to put this in the application to CRCC, the donor. If I don't know what people want then it is very difficult to apply so could you all put your thinking caps on and let me know what you would like. So far we have been going out to lunches at various locations, but this grant is to give carers a short break and we could do other things such as visit gardens or places of interest. it is up to the carers. An evening out somewhere, visiting the Eden Project. Come on - there must be something you like to do.
Karen Supermarket collection dates 1st April Sainbury’s, Penzance 2nd April Tesco Extra, Carn Brea 10th April Morrison’s, Redruth 16th &17th May Morrison’s Long rock 7th June Sainbury’s Penzance 10th & 11th October Tesco’s Falmouth
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South & West Cornwall Branch Information
Branch contact details: Whispering Winds Crellow Hill Stithians Nr Truro Cornwall TR3 7AQ Tel: 01872 274911 www.mssociety.org.uk/southcornwall Satellite events Last Monday of each month: Helston & Lizard Group meeting: Wheal Dream Restaurant, Helston from 11.00am to approx 2.00pm. Lunch at discounted rate. Every Thursday: Yoga at the Well Being Centre, Nance Lane, Churchtown, Illogan. 11.00am to 12.15pm. with Carolyn Smith by appointment only. Every third Thursday of each month Carers meeting at Mike George’s Useful contacts: MS National Centre: 02084 380 700 MS Helpline: 0808 800 8000 Care Direct: 0800 444 000 NHS Direct: 0845 4647 Need help or advice, call our support number 01872 274911 Editors Contact details: details To send in articles or comments. Malcolm Glister Whispering Winds, Crellow Hill, Stithians, Nr Truro, Cornwall, TR3 7AQ
Chairman: Mike George Telephone: 01872 862031 email: cornishmike@talktalk.net Treasurer: Hilary Merton Telephone: 01872 863896 email: hilarym.southcornwallmssociety@aol.co.uk Address: 7 Agar Meadows, Carnon Downs, Truro, TR3 6HS. Voucher Admin Officer: Christine Sargent Telephone: 01209 315386 email: christine.southcornwallmssociety@live.co.uk Secretary: Richard Stevens Telephone: 01736 360551 email: stevens475@btinternet.com M S Support : Telephone: 01872 274911 Carer’s Officer: Karen Moore Telephone 01872 274188 Branch Profile manager and Magazine Editor: Malcolm Glister Telephone: 01209 860754 email: malcolmglister@btinternet.com Branch Web manager: Mike May Telephone: 01872 272 957 email: mikem.southcornwallmssociety@live.co.uk Membership: Betty Alderton Telephone: 01872 270901 email: betty.southcornwallmssociety@live.co.uk Minute Secretary: Moe Fisher email: moefisher@hotmail.co.uk Branch Safety Officer and Youth Team: Nikki Jenkin Telephone: 01736 787089 email: nikkijenkin@googlemail.com Events CoCo-ordinator: Malcolm Glister Telephone: 01209 860754 email: malcolmglister@btinternet.com Fund Raising Officer: Marlene Stevens Telephone: 01736 360551 email: stevens475@btinternet.com Young MS & Friends Laura & Alex ymsgsouthandwestcornwall@mail.com
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 Registered as a limited company in England and Wales 07451571