hambleton & richmondshire branch · pdf filehambleton & richmondshire branch...
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Registered Charity Numbers 1139257/SC041990.
Registered as a limited company in England and Wales 07451571
Hambleton & Richmondshire
Branch Newsletter
April / May 2012
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Hi everyone on this sunny Sunday afternoon!! I’ve just been into town for one or two last minute things for my holiday, which has come round so quickly. I’ve just bought some luggage scales to weigh my case, unfortunately I don’t travel lightly I’m so used to going everywhere in my car, I have a large case even when I go for 2 nights, I’ve got my travel wash, if I’m allowed to take it on the flight, there’s so many rules! I’ve not quite finished reading all the security things yet. What else have I been doing? I went on a Health & Safety Course 2 weeks ago with Doris, we had to learn how to do risk assessments for any activity or function we hold for the branch, it was quite interesting and a nice drive out to Skipton. We can now fill in the relevant forms! I hope as many of you as possible can make it to the Annual Meeting in May at The Lodge, Leeming Bar. Dr Paul McKee (Consultant Neurologist) will be our guest speaker; Dr McKee is also President of our Branch. There will be a cuppa and something to eat and plenty of chance to have a chat and get to know the committee members. If you have any queries please do not hesitate to contact me on the below. Tel; 01609 258236 or 07759 721824. See you around Chrissie Grimston OBE (Old Butlins Entertainer) xx
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Chairperson’s comments .........................…...….. 2
Branch Details …………………………….…………. 4
Dales MS Support Group ………………………….. 5
Stairlift for sale …………………………………….… 5
Test yourself with a Sudoku puzzle ……………... 6
Clinical trial for secondary progressive MS ……. 7
Annual meeting ……………………………………… 8
Carers week survey ……………………………….. 10
MS Society saves specialist posts ……………... 10
More from Bogart the Cat ……….………………...11
Holiday apartment in Portugal ……………...……12
NICE approval for Fingolimod ……………………14
11th annual Charity Golf day ……………..………16
Sudoku solution …………………………………….18
Useful telephone numbers ………………………..19
Physiotherapy ………………………………....…….19
Branch members contact details ……….………. 20
If you have anything that you would like to be included in the next newsletter (June / July 2012) send it to me before 20/5/12.
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Volunteers Calling all members, we desperately need help
to raise funds for the branch.
You do not need to join a committee, but if you
could spare a few hours we would be delighted
to hear from you.
For example can you spare a few hours to do a
street collection or help out at a Coffee
Morning or assist on the Golf Day.
Please call Doris on 01677 424455
www.hambletonandrichmondshiremsbranch.co.uk
If you have any ideas for future Newsletters contact Tom
Green by email on [email protected]
If you would like to receive future editions of
this newsletter directly to your email inbox
simply notify Tom Green by emailing him on
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The Dales MS Support Group Thursday April 12th 12.00 noon Lunch at Black Swan, Leyburn Market
Place 1.30 pm Informal get-together at Brentwood Lodge,
Leyburn including Reflexology etc . Thursday May 10th 12.00 noon Meet for lunch at Lakeside Farm Shop &
Cafe, North Farm, Ellerton upon Swale, (off the B6271 from Scorton to
Northallerton) No meeting at Brentwood Lodge.
STAIRLIFT The stairlift was brand new and (due to a bereavement) only used for 6 months. It has a left side rail and is curved. . It will have to be removed by the buyer so is open to offers.
contact Viv. on 01748 824096
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SODUKO PUZZLES (TO KEEP YOUR MIND ACTIVE)
Please try to fill in the grid with digits in such a manner that every row, every column and every 3x3 box
accommodates the digits 1-9, without repeating any.
Solutions on page 18
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NORMAL -
- DIFFICULT
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A phase III trial, Ascend, involving 850 people in 15 countries will investigate the effectiveness of natalizumab (Tysabri) in secondary progressive MS.
Many people initially diagnosed with relapsing remitting MS (RRMS) find that over time the frequency of relapses decrease but disability gradually increases. This is known as secondary progressive MS. The beta interferon disease modifying drug therapies (Avonex, Rebif, Betaferon, Extavia) can be of benefit in secondary progressive MS if disabling relapses are regular. However, it is recommended that treatment is stopped if a person no longer experiences relapses. Natalizumab is currently given to people in the UK who have highly active relapse remitting MS who have failed to respond to beta interferon or have rapidly evolving severe RRMS. Biogen have announced a trial to test whether natalizumab will stop the inflammation in the central nervous system that results in nerve damage and help to slow down disease progression. The Ascend trial will enrol 850 people with secondary progressive MS who have not had any prior natalizumab treatment. Participants will be given 300mg natalizumab or placebo by intravenous infusion every four weeks for 96 weeks. To be considered for the study, participants will have to fulfil strict criteria, including being aged between 18 and 58, with a diagnosis of SPMS for at least two years, score between 3.0 and 6.5 in the Expanded Disability Status Scale (EDSS), and show signs of disease progression. In the UK, there are a number of trial centres taking part in this study, some of which are currently recruiting (London, Manchester and Liverpool). The study is expected to finish in December 2014. People who are interested in learning more about the study should speak with their neurologist or e-mail [email protected].
Clinical trial for secondary progressive MS
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Carers Week Survey Our annual survey is out and we need your help
Carers Week 2012 will monitor the impact social care cuts have had on those who provide unpaid care in the UK through our national research. Our survey will question a sample of the UK ’s six million carers about their caring role. Recent research showed that carers manage to save the Government £119 billion pounds a year, yet receive little support themselves. We know, because some carers have already told us, how much tougher they're finding it to carry out their caring role. However, we need an accurate picture of caring in Britain , so help us by completing our survey and don't forget to tell your friends too. Carers Week Website: http://carersweek.org/home/item/1654-have-your-say
We have protected 12 specialist posts
The hard work put in at a local level in partnership between branches, volunteers and staff at the MS Society has contributed to protecting 12 specialist nurse, physiotherapy and occupational therapy posts across the UK and ensured that people with MS have access to the specialists they need. In 2012 it is important that we continue to actively work with decision makers locally where MS services are under threat or being reviewed and make sure we seek the best outcome for people affected by MS. If you hear of any planned changes to roles or services then please get in touch with your local Service development Officer to discuss.
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The following Bogart the Cat cartoon strips are displayed with the kind
permission of Bogart the Cat’s creator (Peter Plant) who will carry out
the work highlighted on his website (www.peterplant.com).
To be continued.....
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Funchal Ridge Holiday Apartments
Luxury Self Catering Accommodation in Portugal’s Beautiful Algarve
Contact: - Hazel Bergin
01209 714314 / 07977 269936 [email protected]
Please find attached a copy of our publicity leaflet with regard to our luxury self-catering accommodation which has been especially adapted for people with disabilities.
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We have for the last 11 years been offering properties in Cornwall, England, again specialising in the disabled market and have therefore considerable experience caring for our guests. Having now sold the UK properties we proudly offer two luxury apartments on the outskirts of the beautiful town of Lagos, in Portugal’s stunning Algarve. For your information, we can also link with a local hire company supplying mobility and rehabilitation products for indoor and outdoor use. However we do have a good range of equipment available at no additional charge, including commode chairs, shower chairs, mobile hoist, swimming pool hoist, electric head and toe tilt beds, rise & recline chairs and a fully profiling hospital bed. Each of our apartments has use of an adapted courtesy vehicle. Should guests require carers to attend them during their stay we can also put them in touch with English speaking carers. As we live on site our clients can be reassured that although enjoying the benefits of foreign travel, they are not without assistance should they need it. We can help arrange excursions, book taxis and restaurants, and generally offer local information. Please do not hesitate to contact me should you require further information regarding prices and availability or if there is any other assistance you may require. We like to discuss potential guest’s particular needs prior to booking so that we can maximise their stay.
We have more detailed information on our website which is www.tregooselet.co.uk.
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NICE has announced its plans to recommend that the NHS can prescribe fingolimod (Gilenya) for people with relapsing remitting MS who continue to have relapses despite treatment with one of the first line beta interferons.
NICE (the National Institute for Health and Clinical Excellence) issues guidance on whether treatments should be funded by the NHS in England and Wales. NICE will issue the final guidance in April. Until NICE issues final guidance, decisions on funding of fingolimod treatment will continue to be made at local NHS levels.
This final appraisal reverses the decision to not recommend fingolimod made in two previous draft consultation documents. The MS Trust has been an active contributor to the review process.
The MS Trust welcomes the decision by NICE. The MS Trust believes that fingolimod will be an important addition to the small range of available disease modifying therapies for MS and should be made available to those who continue to have relapses on first line beta interferons (Avonex, Betaferon, Rebif and Extavia).
People with MS have had less choice of disease modifying treatments than in other countries. As a result of this decision, their options have increased, which is a positive development. It is crucial now that MS specialists are able to
NICE GIVES APPROVAL FOR FINGOLIMOD
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prescribe fingolimod to people with highly active MS without local restriction or re-rationing of the treatment.
Pam Macfarlane Chief Executive of the MS Trust “As the options for treatment increase, there is a growing need for independent, evidence-based information on the treatment options that are available as well as skilled unbiased support to help people with MS make the choice of disease modifying therapy that is right for them. The MS Trust believes that people with MS need appropriate information to understand the risks and benefits and help them make decisions in partnership with their MS specialists.”
The NICE decision follows an announcement from the Scottish Medicines Consortium on 12 March that fingolimod is not recommended for use within Scotland, stating that the submitting company (Novartis) did not present a sufficiently robust economic analysis. Novartis has asked the SMC for further clarification regarding their decision and plan to resubmit further evidence to support its approval.
The EMA has begun a formal review of the benefits and risks of fingolimod following the sudden death of one person in the USA within 24 hours of receiving their first dose of fingolimod. Further cases of unexplained deaths are also being investigated. The results of this review are expected to be published in April.
Fingolimod (Gilenya) is licensed as a treatment for people who continue to have relapses or find the relapse rate has increased despite a year's treatment with one of the first line beta interferons (Avonex, Betaferon, Extavia, Rebif). The license also covers its use in people with rapidly evolving severe relapsing remitting MS - two or more relapses a year.
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Solutions for Sudoku puzzles (on page 6)
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MS nurse 01642 854426
Physiotherapy 01609 751323
Befriending Service 01748 832271
Friarage Hospital - Northallerton 01609 779911
Memorial Hospital - Darlington 01325 380100
James Cook University Hospital 01642 850850
Urgent Social Service (Dales) 01969 622125
Hambleton District Council 0845 1211555
Richmondshire District Council 01748 829100
North Yorks. County Council 0845 8727374
Domestic Violence Helpline 0808 2000247
Citizens Advice Bureau – Richmond 01748 823978
Citizens Advice Bureau – Northallerton 01609 770354
Useful telephone
numbers
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Who’s Who Chairperson VACANT Vice Chair Chrissie Grimston 01609 258236 Secretary Ann Whitewick 01609 770209 Treasurer Doris Watson 01677 424455 Support Officer Ann Headland 01609 775043 Support Officer Val Heath 01969 625697 Membership Ann Whitewick 01609 770209 Social Secretary Chrissie Grimston 01609 258236
Newsletter Editor Tom Green [email protected]
Committee Robert Adamson 01845 501058 Gill Elkins 01969 625202 Margaret Lister 01609 760968 Barbara Wilmington 01969 623502 Helen Granger Felicity Thomas 01969 640404