East Berkshire Society Maidenhead, Windsor, Bracknell, Ascot, Slough & Districts CHIT CHAT ISSUE 8 AUGUST INSIDE THIS ISSUE Front page 2014 Branch Newsletter Benefits Part 1 Benefits – sources of information/help Your Committee Employment and Support Allowance (ESA) – changes to Income Support, Incapacity Benefit and Severe Disablement Allowance. Branch updates. MS Society - ESA Support Groups http://www.mssociety.org.uk/ms-support/practical-and-financialhelp/work-and-money/disability-benefits/employment-and-supportallowance-esa Diary dates Part 2 Direct.gov - ESA http://www.direct.gov.uk/en/MoneyTaxAndBenefits/ BenefitsTaxCreditsAndOtherSupport/Illorinjured/DG_171894 Disability Alliance - ESA MS News in brief Articles & Updates http://www.disabilityalliance.org/esa.htm Part 3. Department for Work and Pensions - ESA Your Branch http://www.dwp.gov.uk/employment-and-support Info & News Disability Law Service – Benefits advice http://www.dls.org.uk/Advice/welfarebenefits.html Fundraising Box Notices Benefits and Work - ESA http://www.benefitsandwork.co.uk/employment-and-supportallowance Disability Living Allowance (DLA) and Personal Independence Payment (PIP) – information about changes from DLA to PIP Social Events And more…... Branch website: www.eastberksms.org.uk This site is under reconstruction and articles , info etc are not up to date Registered Charity Number 1139257/SCO41990 Registered as a limited Company in England & Wales 07451571 CONTENTS Front Page: Benefits Pg 2: Below BRANCH CONTACTS Pg 3: Dates for your Diary & meetings & Events Pg 4: Acting Chair’s Update, Support Update, 18-40’ish Evening Club Part 2 Pg 5: MS News & Info in Brief Pg 6: Treat me Right & NICE update Pg 7: Box Notices & Getting involved in Research Part 3 Pg 8/9 Branch news & fundraising Pg 10/11/12 Notices more fundraising, vacant posts etc Pg 13: SOCIAL EVENTS CALENDAR Pg 14 : Info GP practices & info & advice listing BRANCH CONTACTS Acting Chair: Sandy Slattery 07879 297700 [email protected] Membership enquiries: as above Secretary: Mary Smith Treasurer: David Hughes [email protected] Lead Support: Liz Cartmell 07949 491844 [email protected] Vice Chair & Physio Co-ordinator: Rob Thorne 07717 437064 [email protected] 18-40ish Club: Jan Bloomer: 01753 852083 [email protected] Newsletter Editor & Production: Branch Speaker, (as above) Carers Contact: Carol Corby: 01628 823158 after 7pm Social Events Organiser: Margaret Curran 01628 671372 Social Co-ordinator: Liz Hughes Collections Supervisor: Peter Slattery 01628 635396 [email protected] Web site editor: David Taylor 07950 957899 [email protected] Fundraising: Maxine Medcraft 07880714714 [email protected] HEALTH PROFESSIONALS :MS Specialist Nurses & Occupational Therapist 01753 638890 Dates for your Diary Including Meeting Venues REGULAR MEETINGS & Collection dates 18- 40’ish MS Evening Club for younger & newly diagnosed Meet every 2nd Tuesday of the month from 7.30pm at SportsAble Clubhouse, Braywick Sports Ground, Maidenhead. SL6 1BN Tel Jan Bloomer on 01753 852083 Carers Support Group: meet once a month, varying venues Tel: Carol Corby 01628 823158 for more information Slough Coffee Afternoon Meet every 3rd Monday of the month from 2.30-4.30pm at Age Concern Building 2nd Floor, High St, Slough SL1 1HL Tel: Jan Bloomer on 01753 852083 Maidenhead Coffee Morning Meet on Thursday EVERY WEEK from 10.30 - 12.30pm at SportsAble, Braywick Sports Ground, Maidenhead, SL6 1B Bracknell MS Friendship & Coffee get-togethers (not official MS Branch Events) Bracknell Coffee Morning at South Hill Park Every 2nd Wednesday and 4th Wednesday of the month in The Antrium Café 10.30 to 12.30pm Just turn up Bracknell ‘Onwards & Upwards’ Evening Social Club Meet on 2nd Thursday of the month 7pm -9pm at Bracknell Bowling & Social Club, Church Rd, Bracknell.RG12 1EH Entrance £1.00 DIARY DATES Eton College Fair: Saturday 20th September MS Society AGM: Saturday 20th September CAB Talk on Benefits: Sept or October TBC Ferret Night: Saturday 1st November Branch Fundraising Joseph at Wycombe Swan: Thursday 27th November Matinee see Liz Hughes Branch Christmas Lunch; Monday 15th December 2014 SOCIAL EVENTS CALENDAR - see listing inside back page Collection Dates: You will be contacted if dates come through for the second half of the year Contact Peter Slattery if you can spare an hour or two: 01628 635396 or, e-mail: [email protected] Find us on Facebook MS Society East Berkshire Hi All Sadly I have to say Angela Stebbings passed away on 3 rd July. Angela was a great support to our branch with tin collecting. Angela would travel from slough to Bracknell anytime we had a collection and always with a beautiful smile. We will sadly miss her. Over the last few months the branch has had some good trips to the theatre and we also had afternoon tea at Boulters Lock. My scones were really great. We are looking at more short trips as this seems to be what people are asking for. However, the seaside trip to Worthing is sold out. Look out for our Ferret night fund raising event in November. This should be great fun and is always a great hit. (see diary dates) Regarding theatre trips we are getting dates all the time if you are interested in going to the theatre please call Liz Hughes on 01628 290049. Wheelchair places are limited at the theatres but we do manage to get some. If you are interested in any outings or want to know more about the trips that are being planned please contact Margaret Curran 01628 671372. Sadly we lost our venue at St Marks for our exercise class but have managed to get another room at St Marks but this is slightly smaller so numbers are limited. Don’t forget we have Physio at Slough & Heather wood Hospital in Ascot. If you are interested please contact Rob Thorne 07717 437064. Rob and I over the last year have been looking for a suitable venue for people in wheelchairs but so far we have not managed to get anywhere. We have also asked HQ to help with this but they too cannot find a venue. Today when I was in the chemist I saw a leaflet about “Gateway”. This is an Information & Advice service. This service has a range of support including benefits and signposting to other organisations for people with long term conditions. Their number is 01753 822890 & 07818567817 and is for residents of the Royal Borough of Windsor & Maidenhead. Also our Support line 07949491844. We have 3 support volunteers, Liz, Maxine, & Mary. Our web site is being transformed over the next 6 months so watch this space. Take care and enjoy the summer which is here at last. Sandy Slattery Acting Chair Support Update Our Support Team remain committed to help those people with MS who are in need of assistance & information. Please do not hesitate to contact us on 07949 491844 see box notice inside for more information. Liz Cartmell ‘18 - 40’ish (and a bit more) Club’ A friendly get-together of like-minded people to share good humour, conversation, support and friendship. Focusing on ‘younger’ and newly diagnosed people with MS on the second Tuesday of the month. We hope you will consider joining us in the bar at SportsAble Clubhouse, Braywick sports Ground (A308) SL6 1BN. For more information phone: Jan Bloomer on 01753 852083 e-mail: [email protected] Carers Support Group Retirement Fair – 20th August in the grandstand at Ascot Racecourse, 10.00 am – 4.00 pm. Further details can be found on www.ascotretirementfair.com. For details of regular meetings contact Carol Corby 01628 823158 November Newsletter deadline for inserts & articles FRIDAY October 24th Part 2: MS News in Brief PRESCRIPTION CHARGES FACE MORE RISES _-prescription charges went up in April by 20p and will rise again in 2015! The MS Society is a member of the Prescription Charge Coalition and has already received thousands of complaints that the cost of their medication is preventing them from taking it as prescribed. Prescription charges have raised in 33 out of the last 34 years! Take Action and sign the petition which can be found on the website www.prescriptionchargescoalition.org.uk (MS Matters issue 115 pg 4) CARE BILL GETS ROYAL ASSENT : It has care Bill was introduced into Parliament—it has now been signed off by the Queen and will come into full force in April 2015. The Care Act has been referred to as the biggest overhaul of the care and support system in the past 60 years. It will introduce measures that aim to improve the support for people with MS, namely, 1. A new National minimum eligibility threshold, meaning that local authorities will NOT be able to restrict eligibility beyond this threshold. 2. Set out in law that carers are treated the same way as that people they care for. 3. A cap on the costs that people have to pay for care in their lifetime. (MS Matters issue 115 pg 5) DISCLOSING MS AT WORK You shouldn’t have to tell a prospected employer you have MS and by law they shouldn’t ask. If you are specifically asked whether you are registered disabled for the purpose of the equality Act, you must tell them. You must also disclose if you’re in the armed forces or if not disclosing could cause a health & safety issue. The most common time to disclose is after a job has been offered. Before you disclose talk to your MS nurse who can guide you to appropriate sources of information and legal support. The Equality Act 2010 means disabled employees have more rights at work than ever. MS is classed as a disability from point of diagnosis and you are covered by the law. (MS Matters issue115 pg 32) MS Life 2014 update Nearly 3,300 people joined us in Manchester in April for MS Life. The 65 different workshops across the weekend provided a great opportunity for people to learn more about MS research and symptom management, as well as about changes to benefits and services. If you didn’t make it to the event, you can watch videos of the research talks and highlights of the weekend on our YouTube channel: http://www.youtube.com/MSSociety MS Life is a great way of engaging with the wider MS community, especially people who are newly diagnosed. Twenty per cent of attendees had been diagnosed within the last two years and 75 per cent of those said that they were now going to look into volunteering with us. Find us on Facebook: MS Society East Berkshire Treat Me Right campaign begins with a bang As you know, MS Week marked the beginning of Treat Me Right – our new long-term campaign calling for all people with MS to get timely access to the treatments that are right for them. The campaign launch was a great success and 300 people attended Parliamentary receptions across the UK, securing the public support of numerous ministers, policy makers and influencers in every nation. More than 4,500 people have signed up to the campaign online. We’ve had some great support at branch level, particularly with the Letter to Editor you shared with local papers during MS Week. Of special note is our Luton branch, which hosted an information stand all week at the Luton & Dunstable Hospital and was joined on the Friday by Gavin Shuker MP. Thank you to everyone who helped make MS Week a success across the UK. But this is just the first step. As the new NICE guideline for the treatment of MS in England and Wales demonstrates (see next article), our work is by no means done. Watch this space for how you can support the next phase of the campaign and if you haven’t already done so, please add your name today www.treatmerightms.org.uk (Team Spirit July 2014 edition) MS Society fights NICE disappointment The National Institute for Care and Health Excellence (NICE) published its draft clinical guideline for MS in April. We were very disappointed with the guideline and have been putting pressure on NICE to make significant amendments. The guideline itself was drafted behind closed doors – our request to present evidence to the NICE MS Guideline Development Group last October was declined. The guideline proposes blocking access to two treatments that are proven to significantly improve quality of life for people with MS – Fampyra and Sativex – which help people to walk more easily, and manage painful muscle spasms. The draft guideline also fails to recommend that people with MS be reviewed by MS specialists, such as an MS nurse or neurologist. In our detailed policy response, we have urged NICE to reconsider its decisions on the treatments and reiterated the value of MS specialists in the treatment, care and support of people with MS. We also published an open letter in the media which outlined our concerns. NICE are currently reviewing responses to the draft, and we expect the final guideline to be published in October this year. Contact: Policy and Campaigns team 020 8438 0700 [email protected] Cont... Update on our information resources Two new editions now available: Residential care and your option (Fourth edition, April 2014) The new edition is now available on the website www.mssociety.org.uk. Please recycle previous editions. Getting the best from social care services (Third edition, April 2014) The new edition is now available to download or order. We have sent a sample copy to all branches. Please recycle previous editions. To order copies, visit our online shop at http://shop.mssociety.org.uk. If you need a login for bulk orders please contact us. Withdrawn: Getting the best from health care services The existing booklet is out of date and we have no plans at present to produce a new one. This means we are withdrawing it from the website and online shop. However, you can still find information on health care on our main website, www.mssociety.org.uk, the Treat Me Right website, www.treatmerightms.org.uk, and on the NHS choices website, www.nhs.uk Contact: Information team 020 8438 0999 [email protected] (Team Spirit July 2014) Getting involved in research The research pages on our website are full of useful resources, such as details of the research projects we’re currently funding and new treatments in the pipeline. We’d like to highlight our ‘Be in a Study’ page because it provides an excellent way for people affected by MS to find out more about participating in research: http://www.mssociety.org.uk/research/get-involved OR telephone: 020 8438 0822 Recently some researchers have been contacting members or branches directly for help with recruitment, so we’d like to request that these queries are forwarded on to the research team – contact details below. We prefer researchers to always contact the research team first for the following reasons: to ensure that the research has full ethical approval and is led by an experienced researcher to ensure branches aren’t sent too many requests to allow the research team to offer further support to researchers to save time and administration By uploading research projects directly onto our website, we can allow more people to read about opportunities. We may also ask branches to distribute information, but this is done on a case-bycase basis. Team Spirit July 14 Part 3 Branch News, Views & Fundraising MS National Centre Cake Break Update The most common symptoms of MS are invisible We’re delighted that we’ve had over 2,200 Fatigue, Slowed thinking... sign-ups for Cake Break this year so far, and Impaired vision have already received an incredible £190,000 Bowel & bladder problems in donations from across the UK. Thank you so much to all those who have held your Cake PAIN Facts and figures Break, or are planning to soon. It’s because of 1 in 600 are living with MS all of you that we’re moving towards our target 2% increase if a parent has MS—Although the chance is still considered to be low. 30% if someone with MS has an identical twin, who shares exactly the same genes as them, the chance of the twin developing MS is 30% however, there are other factors that may be playing a role as well. of £350,000, funding over 6,000 hours of lifechanging research. BRANCH CAKE BREAK IN MAY RAISED A WONDERFUL Don’t forget we are on Facebook !! £180 Thanks to all our Thursday Coffee Gang for their generosity. MS Society East Berkshire Catch up with what we are doing and events coming up We send a huge thank you to the LAWNS NURSERY teachers & children for their fundraising event that raised £180 for our branch. Our Branch SUMMER DRAW raised a fantastic £1,227 The top 4 main prize winners are: First: £100 Teresa Osborne Second: Dinner for 2 Third: Windsor Racecourse Club Enclosure Tickets, Louise Gagnon Fourth: French Bros Boat trip Family ticket. Gary Tedder Beryl Bennett We are grateful to every one who bought tickets. This was our first Summer Draw and thanks to the generosity of our members, friends and colleagues it was very successful, Thank you all. Margaret Curran Disclaimer: Some views expressed in this newsletter are those of individuals and not necessarily the views or the policy of the MS Society and its supporters We were saddened that our friend and branch member Angela Stebbings Passed away on the 4th July amount of £627.69 was donated in her memory by her friends and family and this has been bequeathed to our branch. Ken, thank you for thinking of us at this sad time. We will miss Angela’s smile. We send our sincerest condolences to the family of Mr Peter Wilde In Peter’s memory donations totalling £245 was bequeathed to our branch. We thank the family and friends for their kindness. Our branch member and friend Fenella Collins raised an Impressive £700 by throwing herself out of a plane at 13,000 feet strapped tightly to a handsome Instructor. For Fenella, well, she ticked two boxes that day! Well done and thank you for always thinking of us. From your branch Friends and members Left: Rob Nieto, centre Ken Stebbings Right: HAPPY ANGELA collecting at Sainsburys. We thank the Management and patrons at Sainsburys superstore, Uxbridge Rd, Slough for their amazing support throughout June. 11/12 June we raised £749.59 14/15 June Carers Week raised £562.15 28/29th we raised £726.14 YOUR BRANCH NEEDS YOU BRANCH SUPPORT TELEPHONE NUMBER 07949 491844 If you, a friend or family member can help in anyway, we are looking for people to help with Fund Raising events or people to Join our volunteer Support Team. Our area is now so large we need more people to help our existing support workers. Full training will be given. If you feel you are interested please contact Sandy Slattery on: 07879297700 or [email protected]. This phone line is manned by our Support Team on a weekly rota basis. The line will be available for calls or text messaging between the hours of 9am to 5.30pm Monday to Friday only. Our Lead Support Officer Contact is: Liz Cartmell, you can contact her on the support number above or via e-mail: [email protected] For health emergencies please contact your GP or local hospital. Branch Support volunteers wanted Our branch is passionate about supporting people affect By Multiple Sclerosis (MS) in the local community. The team offers support and information to all those affected by MS, their families and carers along with arranging regular meetings and social events for the whole family. MS support teams aim to empower people affected by MS through giving information about MS, emotional support and facilitating access to available services and support. The team is co-ordinated by the lead support volunteer. We offer 4 days of training for all support volunteers to assist you in your role as well as the opportunity to attend forums to share ideas and discuss common issues with other support volunteers. The MS Society has a range of publications which can be used to develop your knowledge and to pass on to people affected by MS in the local area. If you are Interested and feel you have the skills we would be very happy to hear from you. E-mail Liz our Lead Support Volunteer: [email protected] Tel: 07949 491844 POSITION VACANT BRANCH CHAIR The post: You will provide leadership to the branch, ensuring that the committee works together as an effective team to provide services and activities necessary to meet the needs of local people affected by MS. If you can lead and motivate a team, are organised and can bring new ideas and perspectives, we would love to hear from you. Full training and induction will be given plus ongoing support. If you are interested Telephone: Sandy Slattery on :07879 297700 [email protected] Support groups YOUR BRANCH Asian MS A national support group for Asian Your Branch is online: people with MS, their carers, friends and family. 020 8458 0856 [email protected] www.eastberksms.org.uk GLAMS A national self-help support group for lesbians, gay men, bisexual and trans (LGBT) people affected by MS 020 8438 0959 Facebook: MS Society East Berkshire General Enquiries tel: 01628-635396 [email protected] Mutual Support For serving and ex-serving members of the Armed Forces and Reserves affected by MS, their dependants and carers. 020 8458 0856 [email protected] For more information on support groups contact Saher Usmani, MS Support Groups Officer on: 020 8438 0856 or [email protected] Sit up and work out classes at SportsAble Classes on the 1st and 3rd Saturdays of the month at 10.30 am. Aimed at people with mobility problems for 1 hour of gentle exercise from a seated position. Qualified fitness instructor Jo Forbes. SportsAble Members free, non members £5 National MS Helpline 0808 800 8000 Reading Branch Some of our members around the Bracknell area may find it easier to drop into Reading branch for coffee Drop-in Centre in Lower Earley opens regularly every Monday 10.30 to 1.30 AT: Salvation Army Hall,, Durand Road, Lower Earley, Reading RG6 5HZ They have a weekly Drop In, where people can meet socially, have computer lessons and listen to guest speakers. Every Picture Tells a Story If you qualify for DLA you also qualify for a CEA (Cinema Exhibitors Association) Card. You can get two-for-one on all cinema tickets. When you buy a cinema ticket show your CEA card then the carer gets in for FREE To apply for the CEA card you need to download an application form from www.ceacard.co.uk fill it in, submit proof that either you are in receipt of DLA, Attendance Allowance, Personal Independence Payment (PIP) or Armed Forces Independence Payment. OR b) You are registered a blind person. You also need to supply a passport sizes photo with your application which will appear on the card and include a processing fee of £5.50, then send it off. You can also see the National Theatre Live, which is a direct broadcast from the National Theatre in London into your local cinema. To be able to go to the cinema to see a live show is amazing. I am certainly going to check this out, Jan On the 18th June our branch member and friend , Edina Jones, organised a Choir Concert in the evening at Furze Platt Senior school. They also held a raffle and tombola on the evening too and raised a wonderful £635 We thank Edina, organisers, teachers, friends and families who made the evening a great success We have to congratulate these ladies for organising a cake break and raising a whopping £1,075 including a tombola and raffle held on the same dayAs yet the money has been donated to MS National. One organiser Heidie Kemp from Dedworth, Windsor, said they had around 70 people through the doors at the Fox & Castle, Old Windsor. Well done girls for making it a fantastic success. Motability, who to call Insurance Call RSAM on 0500 37 37 37 Breakdown Assistance call RAC Motability Assistance on 0800 73 111 73 or 0333 202 1878 Tyre repair or replacement call Kwik Fit on 0330 123 1531 Windscreen/window repair or replacement: Call Glassline on: 0500 3555 3555 Social Events Calendar 2014 (June 18th Wednesday : Boat trip from Henley Museum was a great success) (July 2nd Wednesday: Afternoon Tea at Boulters Lock– was fully booked and a fab afternoon) August 4th Monday: Evening at Windsor Races cancelled due to little response ———————————————————————————————————————————— Tuesday 12th August: Trip to Worthing (booked up but Tel Margaret just in case a place becomes available ———————————————————————————————————————————— September 16th Tuesday: Afternoon tea & scones. Blue Café at Thames Riveria Hotel ————————————————————————————————— October 21st Tuesday: Bowling ————————————————————————————————— November 1st Saturday evening: Ferret Night at SportsAble. ————————————————————————————————— November 27th Thursday: Matinee performance of Joseph (Contact Liz Hughes at coffee morning or email [email protected] ————————————————————————————————————— December 15th Monday: Branch Christmas Lunch TBC contact Jan Bloomer ————————————————————————————————— To register your interest please telephone Margaret Curran 01628 671372 or see her at Thursday Coffee Morning You Have MS or care for someone with MS but do the MS professionals have you on their records? There will be a number of you diagnosed with MS some years ago but have fallen off the radar. People with MS need to be seen once every year by an MS Nurse, not necessarily a consultant, to keep your file active. I have recently spoken to a Carer of an MS person, who’s wife has had MS for a long time but has not spoken to an MS professional for years. He had no idea of the financial help they could have and practical assistance through Social Services. Recently he has been signposted by our Support Team and is accessing many levels of help. If you have any worries or feel you have ‘dropped off the radar’ Please contact your MS Professionals on 01753 638890 and leave a message for a call back Disclaimer: Some views expressed in this newsletter are those of individuals and not necessarily the views or the policy of the MS Society and its support- Information & Advice Sessions in GP practices across Windsor, Ascot & Maidenhead SURGERY & TIMES: 2014 DATES: Woodlands Park Surgery Last Tuesday of every month, 10am-12pm 24th June, 29th July, 26th August, 30th September, 28th October, 23rd/30th December. Datchet Health Centre 1st Wednesday of every month, 2-4pm 4th June, 2nd July, 6th August, 3rd September, 1st October, 5th November, 3rd December. Claremont Surgery 2nd & 4th Thursday of every month, 2-4pm 12th & 26th June, 10th & 24th July, 14th & 28th August, 11th & 25th September, 9th & 23rd October, 13th & 27th November, 11th December (one date only). Holyport Surgery 3rd Thursday of every month, 2-4pm 19th June, 17th July, 21st August, 18th September, 16th October, 20th November, 18th December . Taplow Health Centre 1st Friday of every month, 2-3pm (appointments only-call numbers below) Book your appointment for: 6th June, 4th July, 1st August, 5th September, 3rd October, 7th November, 5th December. Ross Road Medical Centre, Maidenhead 1st Thursday of every month, 2-4pm 5th June, 3rd July, 7th August, 4th September, 2nd October, 6th November, 4th December. Dedworth Road Surgery, Vale Road, Windsor Last Tuesday of every month, 2-4pm 24th June, 29th July, 26th August, 30th September, 28th October, 25th November, 30th December (TBC). Cedars Surgery Last Friday of every month, 12pm-2pm 27th June, 25th July, 29th August, 26th September, 31st October, 28th November, No session in December. Information and Advice across the local community, Windsor, Ascot & Maidenhead Maidenhead Town Hall Every Monday, 11am –1pm Every week. Bluebell Club @ The Christchurch United, Reformed Church, Windsor 1st Monday of every month, 9-11am 2nd June, 7th July, 4th August, 1st September, 6th October, 3rd November, 1st December. St. John’s Church, Eton Wick 2nd Thursday of every month, 10am-12pm 12th June, 10th July, 14th August, 11th September, 9th October, 13th November, 11th December. Eton Wick Library, Village Hall Last Thursday of every month, 10am-12pm 26th June, 31st July, 28th August, 25th September, 30th October, 27th November, No session in December. Datchet Help Point @ Datchet Parish Centre 3rd Thursday of every month, 11am-1.30pm 19th June, 17th July, 21st August, 18th September, 16th October, 20th November, 18th December. For further information and to book appointments for Taplow Health Centre, call Marion Hill or Anne Hall on: 07818 567 817 / 01753 822 890
© Copyright 2024