Jan/Feb 2011 MS Society wigan branch Newsletter

Multiple Sclerosis Society Wigan Branch Front Page Newsletter Jan/Feb 2011

Wigan BranchNewsletter

[By Victoria Fletcher, Health Editor, Daily Express]

A daily pill for multiple sclerosiscould 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.

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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.

New pill for MS could halve the risk of attacks

Multiple Sclerosis Society Wigan Branch 2 Newsletter Jan/Feb 2011

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

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

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

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 thempersonally, 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 Editorłłłłłł

EventsProgrammeCoffee Mornings: Every fortnight, commencing:

Tuesday Feb 15th

Tuesday March 1st the15th and the 29th and

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 “

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

My husband and I divorced over religious differences.

He thought he was God and I didn't….

Multiple Sclerosis Society Wigan Branch

Christmas Ball 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

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, sdance or let our meal digest?

3

Christmas Ball 2010What 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 This is the first MS Wigan Ball for Leo and his lovely wife!won’t be their last!

Heather and friend, contemplating their next move! More of our happy guests- waiting for their pudding

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

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

Newsletter Jan/Feb 2011

What a nice way to start the Christmas festivities, this is our second Christmas Ball and we have a lot of new

ll for Leo and his lovely wife! Bet it be their last!

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

Christmas Ball 2010

Mary! Please let John up to dance!!

Is this the new Mexican wave perhaps?

Our very own strictly come dancing stars!!!!

Multiple Sclerosis Society Wigan Branch 4

Christmas Ball 2011

Christmas Ball 2010 ( ΄Oh what a night

Mary! Please let John up to dance!!

Is this the new Mexican wave perhaps?

Our very own strictly come dancing stars!!!!

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

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

Another table of smiling faces

Newsletter Jan/Feb 2011

Oh what a night ΄)

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

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

Another table of smiling faces….


Quick Crossword Puzzle No 8

Across1. Perspicacious (96. 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)

Down1. 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

Vitamin D - newGuidance22 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

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 one-size-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.

Ever stop to think, and

forget to start again?

Multiple Sclerosis Society Wigan Branch 6 Newsletter Jan/Feb2011

Wigan Branch MS Society:Contact Number: 07963345329

National MS Society

Central Duty Team: 01942 828 777Disability Resource Centre:01942 700889Crossroads: 01942 700 612

Address: 372 Edgeware Road, London,NW2 6DNTel: 020 8438 0700

Website: www.mssociety.org.ukEmail: [email protected]

National MS Helpline0808 800 8000 (Mon-Fri 9am-9pm)

Local Support Development ManagerLeo Brightley: Tel, 020 8438 0918Mob: 07788717589

Service Development OfficerTracey Cole: Tel: 02084380984Mob: 07919698308

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

Kerry Much at the Walton CentreTel: 0151 529 5645

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

Therapy Centre Ince, WiganMarsh Green Community Centre,Kitt Green Road, Wigan, WN5 0EFPhone No: 01942 217 696Mobile No: 07759286285

Adult Services Area Offices Aspull: 01942 832 592Golborne: 01942 728 603Ince: 01942 828 479Leigh: 01942 404 523Standish: 01942 832 592Tyldesley: 01942 404 765Wigan: 01942 487 901Carers Centre: 01942 683 711

Social Security Offices: Wigan: 01942 758 000Leigh: 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

Shop MobilityTel: 01942 776 070

Ring & RideEnquiries: 01942 492 252, 7.30am-5.00pm

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

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

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

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

Contact List

Support for young peoplewww.mssociety.org.uk/pieces

Aimed at people aged 18 – 40.

Kids and Teenswww.youngms.org.uk

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


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

x Access to specialist neurological and neuro-rehabilitation services

x A rapid diagnosis (no longer than three months from referral to completion of investigations).

x A seamless service across health and social care.

x A service that is responsive to people with MS, who should be actively involved in decisions about their care and treatment.

x Sensitive and thorough problem and symptom assessment.

x 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

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 [email protected] or by telephoning or writing to the MS Trust andletting 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.


Free YogaLessons

Are being held every FridayBetween

3.30pm & 4.30pm@

Hope School, Kelvin GroveMarus Bridge,

Wigan

Join Sue Johnson & Friends

For a very warm Welcome

For further informationPhone: 01942 207 483

Free PilatesClassesEvery Tuesday

@St Marie’s Church

Standish (Opposite Almond Brook Estate)

@

1.30pmPlease phone

Heather to book a Session!

Phone: 07702025280 or01257 421 207

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!

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

DonationsWigan Town Relief in Need Charity

Donated £500

The Poacher Pub Donated £26.76p

Jim’s Happy Cakes £5.00

Mount Hotel collection box £ 35 .60p

Yvonne Slater one of our members donated £5.00 in lieu of Christmas cards

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


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 painCoping with feelings of depressionRelaxation techniques and healthy eatingAction planning and problem solving techniquesCommunication 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, arealso living with a long-term condition and have become good self-managers.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 oftheir life.Manage their condition and treatment together with healthcare professionals

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:

x Increases in people’s confidence to manage their condition

x Gains in energy

x Improvements in quality of life

x High satisfaction with the course

x 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.”

For details visit: www.expertpatientsOr ring: 0800 988 5550

Anyone living with one or moreLong - term conditions

can take part

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).


CBT in newClinical 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.

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

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.

MS Nurses are notBeing Replaced

The Prescription ChargesCampaign

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.


Carer’s world radio

Is broadcast from the UK, connecting carer’s with news, information, and

support….www.carersworldradio.com

Wigan Branch

Who’s who in the Wigan Branch?www.mssocietywiganbranch.co.uk

Chair person: Roy Jones

Vice Chairman: Craig Kenworthy

Welfare Support Officer: Jan Hough

Welfare Phone No: 07963345329

Treasurer: Dr Ann ParrTel No: 01257 424 168

Donations: 22 Parkway, Standish Wigan. WN6 0SJ

Editor: Carol CritchleyTel: 01942 207 [email protected]

Lucky Numbers: Ken SuttonTel: 01942 715 349

Fund Raising: Heather ReadTel: 07702025280

Secretary: Tracy [email protected]

Answers to-Quick Crossword 8

WIACWigan independent

Advice Centre

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

WIAC provides help with:

x Disability Allowance form completion (by appointment)

x Attendance allowance form completion (by appointment)

x Tribunal representationx Home visiting service for the

houseboundx Help with all other form

completion including Housing and council Tax Benefit

x 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

Multiple Sclerosis Society Wigan Branch Back Page Newsletter Jan/Feb 2011

The MS Newsletter is published by theWigan Branch of the MS Society

We give regular up-dates about MS and what is happening locally in theMS Community

Editor: Carol CritchleyContact No: 01942 207483E-mail: [email protected]

DisclaimerAll 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

Consciousness: That annoying time between

naps

Have A Nice Day!

Wigan MSS “Lucky Numbers”Results

Draw No 9- Dec

No’s Sold 164

1st £40 No 80 Mrs J Grimshaw

2nd £20 No 117 Mrs J Armstrong

3rd £12 No 77 Mrs K Turton

4th £10 No 8 Mr A Postlewaite

Draw No10 - JAN No’s Sold 164

1st £40 No 54 Mr R Howat

2nd £20 No 24 Mr Mrs D Parry

3rd £12 No 87 Mrs J Armstrong

4th £10 No154 Mrs M Ridyard Log on to our website; www.mssociety.org.uk/wigan;

To keep up to date with all that is happening in your branch

Jan/Feb 2011 MS Society wigan branch Newsletter

Documents

new pill

wigan branch ms society

new members

new drug

new hopes

new plans

new dreams

new year