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Multiple Sclerosis Society Wigan Branch

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Newsletter Jan/Feb 2011

Wigan Branch Newsletter New pill for MS could halve the risk of attacks [By Victoria Fletcher, Health Editor, Daily Express]

A daily pill for multiple sclerosis could be available in the UK within months, it emerged yesterday. The drug will revolutionise the lives of 75,000 patients who face a constant battle to keep the disease at bay. At the moment the only drugs that can reduce the number of attacks have to be taken through injections or infusions. Last night, charities described it as “great news” for patients. Blurred Trials have shown the pill, called Fingolimod or Gilenya, can cut the risk of an attack by between 50 and 60 per cent over two years. Yesterday an expert committee told the European Medicine Agency that it should be allowed on to the market. This is an important first step towards being granted a license. Dr Jayne Spink, director of policy and research at the MS Society, said: “This is great news for people with MS.

The availability of a tablet to treat the condition will give people more choice and for many will come as a welcome relieve from the frequent injections. “All being well,” Gilanya could be available later this year. MS affects more than 100,000 people in the UK and 2.5 million around the World. It causes blurred vision, muscle pain, nerve pain, extreme tiredness and sometimes a lack of bladder and bowel control. It is the most common Neurological condition to affect young adults and is normally diagnosed between the ages of 20 and 40. The new drug is designed to help people with the most common type, called relapsing-remitting MS. About three in four patients have this form of the disease. Dr Eli Silber, a Neurologist from King’s College London, who led the trials, said “Fingolimod halves the frequency of relapses compared to a commonly used injection. It means people can get on with their lives.


Multiple Sclerosis Society Wigan Branch

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Newsletter Jan/Feb 2011

Dear Members, Here we all are with a New Year in front of us, looking forward to 2011 with new plans, new hopes, and new dreams to be achieved, let’s hope we achieve them personally, and as the Wigan Branch MS Society. To all the new members who have joined us “Welcome”, we hope you enjoy being a part of our society and we look forward to seeing you at our events.

Carol

News Editor

Get Well Soon ‘To Craig our Vice Chairman’ Who is very poorly and has been since before Christmas.

Events Programme Coffee Mornings: Every fortnight, commencing:

I would like to say on behalf of the committee a big “Get well soon” And hope you’ll be up and about again very soon

Tuesday Feb 15th Tuesday March 1st the15th and the 29th and

We also wish that the rest of 2011 - Is Happier and Healthier for you!

Tuesday April 12th Monthly Get Together:

Our monthly “Get Together” will take place at Wigan and Leigh every alternate month. Our next one will be taking place at the “Mount Hotel Wigan” on February 10th at 7.30pm. At the “Harvester Leigh” on March 10th at 7.30pm At the “Mount Hotel Wigan” on April 7th at 7.30pm

Watch this Space In the April Newsletter! For our more extensive: “2011 Events Calendar “

My husband and I divorced over religious differences. He thought he was God and I didn't….

And let us see what exciting events and news, the committee will come up with, for the remaining ten months of 2011!!


Multiple Sclerosis Society Wigan Branch

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Newsletter Jan/Feb 2011

Christmas Ball 2010 What a nice way to start the Christmas festivities, this is our second Christmas Ball and we have a lot of new faces with us this year and of course our old Faithfull’s.

Here is one happy family who know how to enjoy themselves

Heather and friend, contemplating their next move!

Sheila, Barry and Mary from the therapy Centre, thinking, should s we dance or let our meal digest?

This is the first MS Wigan Ballll for Leo and his lovely wife! Bet it won’t be their last!

More of our happy guests- waiting for their pudding perhaps?

Ruth and friend having a right old giggle, could Jeff be on the dance floor Hmm?


Multiple Sclerosis Society Wigan Branch

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Newsletter Jan/Feb 2011

Christmas Ball 2010 ( Oh what a night )

Two more newcomers to our Ball, Craig our new Vice Chairman and his lovely wife

Mary! Please let John up to dance!!

Another table of smiling faces faces‌.

Is this the new Mexican wave perhaps?

Our very own strictly come dancing stars!!!!

I think Heather must have won the raffle, she seems in a hurry!!

Christmas Ball 2011


Multiple Sclerosis Society Wigan Branch

Quick Crossword Puzzle No 8

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Newsletter Jan/Feb 2011

Vitamin D - new Guidance 22 December 2010 Author: MS Trust A number of health organisations including Cancer Research UK and the MS Society have issued guidance on vitamin D which considers a number of areas:

Sunlight

Across 1. Perspicacious (9 6. Egg-shaped object (5) 7. Vacuous (5) 9. The night before (3) 10. Display of bad temper (7) 11. Get (7) 14. Large antelope (3) 16. Musical drama (5) 17. Melodies (5) 18. Rife (9) Down 1. Range (5) 2. Monstrous (9) 3. Trainee (5) 4. Vegetable (5) 5. Cherished desire (5) 8. Hubris (9) 11. Fragrance (5) 12. Picture (5) 13. Minor actor in a crowd scene (5) 15. Distressed (5)

Answers to crossword: on page 11

Ever stop to think, and forget to start again?

The consensus statement highlights sun exposure as the main source of vitamin D and suggests regularly going outside for a few minutes around the middle of the day without sunscreen. The statement says that whilst it is not possible to give a onesize-fits-all recommendation little and often is usually best and that time taken to make sufficient vitamin D is typically less than the amount of time needed for skin to redden and burn.

Supplements Authors state that Vitamin D supplements can be useful for people who have low sun exposure, dark skin, children and older people. For these groups the Government recommended dose is highlighted. Supplements containing vitamin D3 (cholecalciferol) are suggested as preferable to those containing vitamin D2 (ergocalciferol)

Further research Many questions about vitamin D remain, particularly whether higher levels of vitamin D directly reduce the risk of chronic conditions and if supplementation would achieve similar effects.


Multiple Sclerosis Society Wigan Branch

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Newsletter Jan/Feb2011

Contact List Wigan Branch MS Society:

Central Duty Team: 01942 828 777

Contact Number: 07963345329

Disability Resource Centre: 01942 700889 Crossroads: 01942 700 612

National MS Society Address: 372 Edgeware Road, London, NW2 6DN Tel: 020 8438 0700 Website: www.mssociety.org.uk Email: info@mssociety.org.uk National MS Helpline 0808 800 8000 (Mon-Fri 9am-9pm) Local Support Development Manager Leo Brightley: Tel, 020 8438 0918 Mob: 07788717589

Social Security Offices: Wigan: 01942 758 000 Leigh: 01942 236 700 Continence Advice Services: Tel: 01257 501 340 Wigan Independent Advice Services: Tel: 01942 324 851. Young Carers Free Helpline: Tel: 0800 169 3669

Service Development Officer Tracey Cole: Tel: 02084380984 Mob: 07919698308

Shop Mobility Tel: 01942 776 070

MS Nurses

Enquiries: 01942 492 252, 7.30am-5.00pm

Denise Winterbottom at Salford Royal (Formerly Hope Hospital)Tel: 0161 206 161

Booking Wigan Area: 01942 829 444, 9am-11am

Kerry Much at the Walton Centre Tel: 0151 529 5645

Booking Leigh / Atherton: Tel: 01942 829 400, 9am-11am

Karen Lea, Community Matron for Neuro Sciences. Taylor Neuro Community Team, STOT Unit, Leigh Infirmary, The Avenue, Leigh WN7 HIS. Tel: 01942 264 255

Wigan & Leigh Wheelchair Service: Tel: 01204 390 742 (24hr-365 Days a Year)

Therapy Centre Ince, Wigan Marsh Green Community Centre, Kitt Green Road, Wigan, WN5 0EF Phone No: 01942 217 696 Mobile No: 07759286285 Adult Services Area Offices Aspull: 01942 832 592 Golborne: 01942 728 603 Ince: 01942 828 479 Leigh: 01942 404 523 Standish: 01942 832 592 Tyldesley: 01942 404 765 Wigan: 01942 487 901 Carers Centre: 01942 683 711

Ring & Ride

Carers Helpline: 01942 606 086 Monday-Friday: 9.00am-10.30pm Saturday-Sunday: 1.00pm-10.30pm

Support for young people www.mssociety.org.uk/pieces

Aimed at people aged 18 – 40.

Kids and Teens www.youngms.org.uk

Young Peoples Newsletter!! www.staying-positive.co.uk


Multiple Sclerosis Society Wigan Branch

What is the MS service like in your area? Open door-Nov 2010 Campaigning for improvements to MS services is one of the MS Trust’s objectives. Early next year (2011) the MS Trust, in partnership with the Royal College of Physicians, will be undertaking the third survey of MS services in England and Wales and we would like you to take part. In 2006 and again in 2008 the survey asked people with MS, Hospital Trusts, Primary Care Trusts and the Strategic Health Authorities a series of questions based on the Nice MS Management guidelines. The aim is to understand what services are available and to see how they meet the needs of people with MS.

Key recommendations of the Nice management guidelines Access to specialist neurological and neuro-rehabilitation services A rapid diagnosis (no longer than three months from referral to completion of investigations). A seamless service across health and social care. A service that is responsive to people with MS, who should be actively involved in decisions about their care and treatment. Sensitive and thorough problem and symptom assessment. Self-referral back into specialist services after discharge.

Previous survey results: The 2006 survey showed that there were some pockets of excellence, but in the main services for people with MS were poor. Services were not matching the quality or quantity recommended by national policies. In 2008 over 1.300 people with MS took part and although

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Newsletter Jan/Feb 2011

access to specialist neurological services had improved, there were still long delays from GP referral to diagnosis, with 50% of people waiting over 20 weeks. In addition, the survey showed that access to neurological rehabilitation services remained wholly inadequate – only 36% of people with MS had access to such services. The survey recognised that the inadequacy of symptom management could cause distress and may worsen disability. If neurological rehabilitation were ready available, the severity of disability would be reduced. One of the big concerns in both the previous audits was the number of people who had experienced skin pressure ulcers, 9% in 2006 and 6% in 2008. As well as being extremely distressing for the person concerned, the estimated total cost of treating preventable skin pressure ulcers in the UK is estimated to be £1£2 billion pounds, a significant chunk of the NHS budget.

The 2011 survey: The structure of the NHS is changing, but there will still be people in place who will commission, provide, monitor and definitely use MS services and it is even more important to get all of their views at this uncertain time. Nice have also announced a review of their guidelines, however the key recommendations as shown above are still very relevant and unlikely to change. Please help us by taken part in the survey – the more data collected, the more significant the results and the more pressure we can apply for services to be improved. If you live in England or Wales and you have been in contact with any NHS service (GP, hospital, therapist etc) about your MS in 2010 please register to take part in our survey. Register by emailing info@mstrust.org.uk or by telephoning or writing to the MS Trust and letting us know that you are willing to take part. The survey will take place in the first quarter of 2011 and the results published in the summer.


Multiple Sclerosis Society Wigan Branch

Free Yoga Lessons

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Newsletter Jan/Feb 2011

Donations Wigan Town Relief in Need Charity Donated £500 The Poacher Pub Donated £26.76p Jim’s Happy Cakes £5.00

Are being held every Friday Between 3.30pm & 4.30pm @ Hope School, Kelvin Grove Marus Bridge, Wigan

Mount Hotel collection box £ 35 .60p Yvonne Slater one of our members donated £5.00 in lieu of Christmas cards

Join Sue Johnson & Friends For a very warm Welcome For further information Phone: 01942 207 483

Free Pilates Classes Every Tuesday @ St Marie’s Church Standish (Opposite Almond Brook Estate) @ 1.30pm Please phone Heather to book a Session! Phone: 07702025280 or 01257 421 207

Lucky Numbers A new year will start for lucky numbers, in April 2011. “To be a winner with lucky numbers, please get in touch with Ken Sutton!” Phone number: 01942 715349 Find us on facebook! Newly diagnosed people often think of the MS Society as being a little old fashioned. But we are really challenging that. Look on our new facebook site!

“Wrinkled was not one of the things I wanted to be When I grew up”…..


Multiple Sclerosis Society Wigan Branch

What is the Expert Patients Programme? The Expert Patients Programme (EPP for short) is a Free course designed for adults living with any long-term health condition(s). The EPP aims to help you to take more control of your health by learning new skills to manage your condition better on a daily basis. Topics the course covers include: Managing tiredness and pain Coping with feelings of depression Relaxation techniques and healthy eating Action planning and problem solving techniques Communication skills with health care professionals, friends, family and colleagues. The EPP CIC course is run over six weekly sessions with each session lasting 2 hrs 30 mins. It is facilitated by trained tutors who, typically, are also living with a long-term condition and have become good selfmanagers.

How can it help you?

By taking part in an EPP CIC course you will: Learn new skills to manage your health condition. Develop confidence in the daily management of your specific condition(s). Learn about developing more effective relationships with healthcare professionals.

How has it helped other people?

People who have taken part in an EPP CIC course have reported that it has helped them to: Feel confident and more in control of their life. Manage their condition and treatment together with healthcare professionals

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Newsletter Jan/Feb 2011

Be realistic about the impact of their condition on themselves and their family. Use their new skills and knowledge to improve their quality of life.

Research confirms EPP benefits In a randomised trial carried out by the National Primary Care Research and Development Centre, Researchers found: Increases in people’s confidence to manage their condition Gains in energy Improvements in quality of life High satisfaction with the course

Anyone living with one or more Long - term conditions can take part

Improvements in partnerships with doctors “The EPP CIC course has made me realise that I can have some say over my pain and not let it dictate my life.” “I have started swimming again which I never thought I would do – it’s given me a new lease of life.” “It has been a great help just to be able to see and speak to people with the same problems.”

Control your condition don’t let it control you. Learn to manage the day-to-day issues associated with living with a long- term condition(s). For details visit: www.expertpatients

Or ring: 0800 988 5550


Multiple Sclerosis Society Wigan Branch

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Newsletter Jan/Feb 2011

MS Nurses are not Being Replaced

CBT in new Clinical Trials

It is a worrying time for the National Health Service as a whole, but the threats to our MS Nurses is a scary time for the people with MS, who rely on the services and expertise of these specialist nurses.

The MS Society is funding two clinical trials based on the principles of cognitive behavioural therapy (CBT)

MS nurses are being promoted and moved to different areas of the National Health Service which is good for them, but as their not being replaced, it is not good news for the people who suffer from MS. For a lot of people who suffer this dreadful illness, their MS Nurse can be their lifeline for support and in some cases getting help to see their Neurologist sometimes a lot quicker than perhaps your GP can. But even if this isn’t so, they are on the other end of the phone to listen and offer expert advice. Maybe as MS sufferer’s we could write to our local Member of Parliament or the Health Minister and express our concerns on this matter if they received enough complaints it could possibly do some good……..

The Prescription Charges Campaign An alliance of 23 health charities, has expressed disappointment that the Government has decided not to introduce free prescriptions for people with long term conditions in England. This had been promised . by the previous Government but wasn’t implemented before the election. Prescription charges have been phased out in Wales and Northern Ireland and are due to become free in Scotland on the 1st April.

CBT is a type of therapy that involves looking at how thoughts, actions and feelings relate to each other. The two separate trials are testing the effectiveness of CBT approaches in improving different aspects of the lives of people with MS. The first trial (called SaMS) is looking at the effectiveness of a nurse-led CBT approach to help people adjust to a diagnosis of MS. The trial is being led by Professor Rona Moss-Morris at the University of Southampton. The researchers have developed a CBT manual that can assist MS nurses in delivery of the treatment to people with MS. The aim is to compare the effectiveness of CBT with a standard therapy called supportive listening. If the new CBT therapy is proved successful, it could be made available more widely. The Second Trial is a ‘group- based Intervention trial. This is testing the effectiveness of a CBT-based programme to treat fatigue in groups of people with MS. It’s being led by Professor Peter Thomas, and coordinated by Dr Sarah Thomas, at Bournemouth University/Poole Hospital NHS Foundation Trust. The trial will test whether this therapy programme is effective in helping people with MS to manage their fatigue and improve their quality of life. Both trials are due to report soon.


Multiple Sclerosis Society Wigan Branch

Wigan Branch Who’s who in the Wigan Branch?

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Newsletter Jan/Feb 2011

WIAC Wigan independent Advice Centre

Chair person: Roy Jones

A free, welfare benefits advice service for residents of the Wigan Borough

Vice Chairman: Craig Kenworthy

WIAC provides help with:

www.mssocietywiganbranch.co.uk

Welfare Support Officer: Jan Hough Welfare Phone No: 07963345329 Treasurer: Dr Ann Parr Tel No: 01257 424 168 Donations: 22 Parkway, Standish Wigan. WN6 0SJ Editor: Carol Critchley Tel: 01942 207 483 carolandjeff@blueyonder.co.uk Lucky Numbers: Ken Sutton Tel: 01942 715 349 Fund Raising: Heather Read Tel: 07702025280 Secretary: Tracy Wadsworth Tmw123@hotmail.co.ukSolution Answers to-Quick Crossword 8

Disability Allowance form completion (by appointment) Attendance allowance form completion (by appointment) Tribunal representation Home visiting service for the housebound Help with all other form completion including Housing and council Tax Benefit Advice Line Service for 33 hours a week Contact details: Phone number: 01942 324851(helpline) Opening hours: Mon 8.30am-12 noon, 1pm-5pm; Tues11.15am-12noon, 1pm-5pm; Wed 8.30pm-12noon. 1pm-4pm; Thurs 8.30am -12noon, 1pm-5pm; Fri 11.15am -12noon, 1pm- 4pm; Address: 26 Rodney House, King St, Wigan, WN1 1BT

Carer’s world radio Is broadcast from the UK, connecting carer’s with news, information, and support…. www.carersworldradio.com


Multiple Sclerosis Society Wigan Branch

Back Page

Newsletter Jan/Feb 2011

Wigan MSS “Lucky Numbers” Results Draw No 9- Dec No’s Sold 164 1st £40

No 80

Mrs J Grimshaw

£20

No 117

Mrs J Armstrong

3rd £12

No 77

4th £10

No 8

nd

2

Mrs K Turton Mr A Postlewaite

Draw No10 - JAN No’s Sold 164 1st £40 nd

No 54

Mr R Howat

2 £20

No 24

Mr Mrs D Parry

3rd £12

No 87

Mrs J Armstrong

4th £10

No154

Mrs M Ridyard

The MS Newsletter is published by the Wigan Branch of the MS Society We give regular up-dates about MS and what is happening locally in the MS Community Editor: Carol Critchley Contact No: 01942 207483 E-mail: carolandjeff@blueyonder.co.uk Disclaimer All the views expressed in the publication are individual and not necessarily the view or the policy of the charity and its supporters. We will be pleased to receive your comments, poems, jokes, or any articles you wish to share with us. Please send to the above E-mail address Log on to our website; www.mssociety.org.uk/wigan; To keep up to date with all that is happening in your branch

Consciousness: That annoying time between naps

Have A Nice Day!


Jan/Feb 2011 MS Society wigan branch Newsletter