Tuesday, 31 January 2012

Reading Borough Council issus an alert:

Source Reading Borough Council:

"Vulnerable people in Reading are being pressured into paying too much for mobility aids by unscrupulous door-to-door salesmen.

Reading Borough Council Trading Standards is backing an Office of Fair Trading campaign to raise awareness of misleading claims being made by sellers of products including scooters, wheelchairs and walk-in baths.  For more click here. "

Note:
Don't forget members of BMSTC can get a discount on mobility aids and equipment through our local, reputable and trusted company Sun Mobility.  If you are purchasing items from them simply tell them you are a member of BMSTC.  See their website here.

Why not Nominate BMSTC for a Queen's Award for Voluntary Service?

We had a National MS Therapy Centre meeting here at BMSTC last Sunday.  Other Centres have previously been nominated to receive a Queen's Award for Voluntary Services from their membership and report great benefit in receiving this highly regarded award. 

People who benefit from the service can nominate a group, however people involved in the organisation including Trustees, Volunteers and staff are unable to make a nomination for their group. 

Nominations need to be received by the 30th September to be considered in that year.  If you think BMSTC deserves to receive this recognition, please find out more details here.  Thank you!

Invitation for Carers of people with MS to take part in a Survey

Online questionnaire request from Laura Kelly, a PhD student working on a Programme Grant funded by the National Institute of Health Research which aims to explore how sharing health experiences online affects people (for example decreasing their sense of isolation; increased understanding of the condition/health behaviour; support for self-management; or possibly ways in which it might make them feel worse!).   For more information click here.

Long term conditions consultation closes at midnight this Saturday.



Source Bracknell Forest Council:

This is a final reminder that the Long Term Conditions consultation will be closing at midnight this Saturday.

Many thanks to everyone who has contributed to date. Don't forget to pass this on to anyone else who might want to contribute. Please see the link to complete the online form.  For more  click here.

Cow Lane re-opened this Monday


Source BBC:
A commuter route in Reading has reopened following the installation of a new 1,600-tonne bridge.

Cow Lane has been closed since early December for Network Rail to remove and replace one of two bridges and lay a new road under the structure.  For more click here

Clinical trial for secondary progressive MS


Source MS Trust:
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.  For more click here.

Best wishes to Patron Paul Daniels


Source Get Reading:
(We have sent our best wishes from all at BMSTC to Paul)

TV magician Paul Daniels is recovering after mangling his hand in a circular saw while doing some DIY at his Wargrave home.  Read more here.


Are there lots of side-effects associated with the currently available disease modifying drugs?


Source the MS Trust:

The MS Trust has asked Professor David Bates, Consultant Neurologist at University of Newcastle-upon-Tyne NHS Hospitals Foundation Trust to answer some of the most challenging questions people with MS ask about disease modifying drugs.
Watch the video here.

Please be aware of increase in theft from cars


Source Reading Borough Council:

An alert has been circulate from Thames Valley Police to make people aware of an increase in theft from cars.  Please be sure to not leave anything of value on display in your vehicle.  For more infomration see their website here.

Thursday, 26 January 2012

MS Information Day - 30th March 2012 at Hilton Hotel Reading

"Embracing Life with MS" The Hilton Hotel, Drake Way, Reading, RG2 0GQ (Near the Madejski Stadium).

MS Specialists, Therapists and Nurses from Berkshire would like to invite you to an information day to be held on 30th March 2012 at the Hilton Hotel, Drake Way, Reading, RG2 0GQ.

This first information day is for people affected by MS within Berkshire has been organised in collaboration with Dr. Faraz Jeddi, Consultant Physicians in Neurorehabilitation and Neurodisability.

Our aim being to provide up to date information with strategies to embrace quality of life. The information day is suitable for people with MS, their families, carers and professionals.  Booking essential, closing date 10th March 2012.  For more information and booking details click here!

Wednesday, 25 January 2012

How do you explain MS using Madonna, Adele and Kate Nash? Only Movies on my Mind can do that.


From Shift MS:
by Movies on my Mind
The progressive nature of multiple sclerosis is a hard thing to get your head around, especially if you’re the type of MS’er for whom symptoms come and go.
The truth is that half of all MS relapses may leave some lingering problems, however slight. On average, around 65% of people with relapsing remitting MS will develop secondary progressive MS within 15 years of being diagnosed.

If MS progression is such a common feature of the disease, why haven’t scientists done better in trying to prevent it?

It’s easy to get lost in scientific lingo, therefore, in true Shift.ms style, let’s try and simplify progressive MS in a less stuffy way.

For a moment, let’s pretend that this disease called multiple sclerosis is the British music industry.  Read more here.

Reading Half Maraton update:



A big thank you to Carol Bowker who came to the Centre last night to talk to our Reading Half Marathon runners. Carol in an elite runner and has completed over 80 half marathons, so she had lots of tips on training to pass on to our team.
 

We still have a couple of places left for the race, so if you know anyone who wants to take part and raise funds for the Centre, please contact the Centre on 0118 901 6000 or email jackie@bmstc.org

Thank you Sirius Automotive!


Sirius Automotive have kindly part sponosored the "Embracing MS in Berkshire" Information day on the 30th March 2012 at the Hilton Hotel in Reading. They will be coming along on the day with two of their vehicles to exhibit and a promise of some goody bags to hand out to people on the day!  Visit their great website here!

For more information see our events page at www.bmstc.org or email pippa@bmstc.org
Places  for the MS Information Day are limited and booking is essential :0)

MS pill Gilenya undergoing safety review


Source the MS Society:
The European Medicines Agency has begun a review of the 'benefits and risks' of the new MS pill Gilenya (aka fingolimod) following concerns over the treatment's effects on the heart after the first dose.   For more click here.

Singing for Health at BMSTC!



Post by Silvia Lane:
 
"Today I've spent a very enjoyable hour singing at the centre. We are a group of 3-7 so far, looking for more people who might want to join us. We meet on a Tuesday afternoon at 2pm at the centre, usually up in the meeting room, sing for an hour, (not necessarily to Royal Albert Hall standard but enjoyable nonetheless) have a wee chat and go home with more endorphins in our body than before."  If you would like find out more or join in please just come along to BMSTC on a Tuesday at 2.pm :0) 

Experts review vitamin D advice


Source BBC:
(Not an MS article but still of interest, there is also an interesting comment at the bottom of the article from  " 'Whowrote this' - Anyone saying it wasn't like this in their day might like to know that in the 1940's the UK fortified margarine and milk powder with vitamin D. Supplements were handed out and milk and rusks were fortified with Vit A and D. The truth is we understood a considerable amount about nutrition before the war but afterward pharmaceuticals dominated and this knowledge was regarded as archaic"

The chief medical officer for England, Dame Sally Davies, is to contact medical staff about concerns young children and some adults are not getting enough vitamin D.

Government guidelines recommend some groups, including the under-fives, should take a daily supplement.  For more read here.

Monday, 23 January 2012

If you are going to the Olympics or Paralympics then this transport service maybe of interest to you


First logo
Source First Group Games Travel:
Welcome to our site! First are working with Games Organisers to deliver 2012 Games Travel options. We offer Park & Ride, coach and accessible travel to the London 2012 Olympic and Paralympic events.

Whether you want to travel by coach to Weymouth and Portland or the Olympic Stadium, or you prefer the flexibility of Park & Ride we have a range of cost effective, simple transport services to get you there.

We also have accessible options for blue badge parking and coach parking facilities for tour operators.  For more click here!

It’s time for a better deal for neurology


the neurological alliance logo

Source The Neurological Alliance:

In December 2011, the National Audit Office published a groundbreaking report into the state of neurological services in England.
The report found that despite an £800 million increase in spending on neurological services since 2006, both quality of care and availability of vital services remain patchy.  For more click here.

Tuesday, 17 January 2012

For my patients with MS


Dr Faraz Jeddi Consultant Physicians in Neurorehabilitation and Neurological Disability, Royal Berkshire Hospital, is running the Reading Half Marathon for BMSTC! If you would like to support him, please visit his Just Giving Page here!

NHS 'facing neurology disease time bomb'


Source BBC:
The NHS in England is facing a time bomb if it does not get to grips with neurological conditions such as Parkinson's disease, campaigners say.

The Neurological Alliance, which represents 70 groups, said a combination of poor services and rising case numbers was causing problems.  For more click here.

BrainStorm sees positive data in ALS stem cell trial


Source Reuters:
(Reuters) - Data from the first ALS patients in a clinical trial treated with BrainStorm Cell Therapeutics adult stem cell therapy did not show significant side effects and the treatment has so far proven to be safe, the company said on Tuesday.  Read more here!

Monday, 16 January 2012

REMAP - A great organisation!


Remap is a very special charity, working through a nationwide network of dedicated volunteers. They use their ingenuity and skills to help people with disabilities to achieve much-desired independence in some aspect of their lives, or to enjoy leisure opportunities previously closed to them.

This is a great organisation! If you want to contact the local Case Officer for REMAP in Berkshire you can email him: BrianEJCarpenter@aol.com

 


Source MS Trust:
A significant figure in research into bladder problems for people with MS has been given a CBE for her services to Uro-Neurology in this year's New Years Honours.  For more click here.

Firategrast effective at reducing relapse rates


Source MS Trust:
Higher doses of firategrast produced a 49% reduction in the number of active lesions visible on MRI scans.
Firategrast is an experimental oral treatment for relapsing remitting MS. Like natalizumab (Tysabri), firategrast is though to work by preventing certain immune cells from passing through the walls of blood vessels into the central nervous system.   For more click here.

Fundraiser for BMSTC


I will be having a fundraiser in aid of BMSTC to showcase all the phabulous new products from Phoenix Trading. It's on Saturday 28th January, 10 - 4. Please come, and bring a friend.  For more information please click here!

Thursday, 12 January 2012

Warm in West Berkshire Workshop Launch


The Warm In West Berkshire Launch Workshop is taking place at Shaw House, Newbury on Friday 20th January from 9.30am - 1.00pm. Warm in West Berkshire is a Department of Health funded initiative that will run until the 31st March 2012. To book a place on the workshop please click here.

Lords vote against time limiting benefits


Source MS Society:
Plans to limit the out-of-work disability benefit Employment & Support Allowance (ESA) to just one year were rejected by the House of Lords yesterday.   For more information please click here.

Long Term Conditions Consultation



Bracknell Forest Council consultation on Long Term Conditions is open for feedback until the 4th February.  To take part click here.
Check out this great new charity which Lydia (one of our former physio helpers with the fantastic hair!!) is involved with setting up! 

They're just starting out at the moment but watch this space for more news! If you fancy giving diving a go then do get in touch with her, she would love to hear from you!

www.diveability.org

Reading Half-Marathon is an 18,500



Source Reading Post:
(BMSTC have a few places left if anyone wants to run for us!)

The Mizuno Reading Half Marathon is a sellout with runners on their marks for all general public and corporate charity relay places.
The organisers announced on Monday that the entry sheet is full, with the maximum 18,500 places taken.  For more click here.

More money for disabled facilities grants in England


Source MS Trust:
The Government has announced £20 million additional funding for Disabled Facilities Grants in England for the financial year 2011-2012, which ends this April. The money is specifically to help more people remain in their own homes for longer. What's not known yet is how the funding will be allocated among the various councils in England.  For more click here.  

Tuesday, 10 January 2012

Informal Carers needed to take part in study






Department of Social Policy and Intervention

Informal carers needed to take part in study
I am a DPhil student in the Social Policy Institute at the University of Oxford, carrying out a study of informal carers’ attitudes to pensions and pensions planning. I'm looking to interview working-age carers about their experiences of caring, and about their attitudes towards pensions and pensions planning.

I'm looking to interview people who:
regularly providing around 20 hours a week of unpaid care/support to family, friends or neighbours

are aged between 35 and 65

are based in Berkshire, Oxfordshire or Buckinghamshire

If you would like to take part, the interview should last for no longer than an hour, and can be arranged for a time and place to suit you.

If you would like to find out more, please contact me on 07515371010, or email me on
Sarah.Hutchinson@stx.ox.ac.uk.

Many thanks for your time.

Sarah Hutchinson

DPhil Candidate, Department of Social Policy and Social Work

St Cross College, University of Oxford.

Thursday, 5 January 2012

Happy New Year!

Happy New Year everyone! :0)

Scans 'show mindfulness meditation brain boost'


Source BBC:
The theory that meditation can reduce stress, depression and even chronic pain is one that has been gaining in momentum in recent years.

So the BBC's David Sillito has been learning the art of mindfulness meditation in order to find out for himself.   To watch click here.

(Watch this space for a Mindfulness Course which will be available at BMSTC later this year!)

Marshalls Needed for Reading Half Marathon!

We are now looking for road marshalls to help at this year's Reading Half Marathon which will be taking place on Sunday 1st April.

If you would like to be part of Reading's premier event and support our fantastic team of runners, please call Jackie at the Centre on 0118 901 6000 or email jackie@bmstc.org

Gowrings January Sale!


Source Gowrings Mobility:

Don't miss the Great Gowrings Mobility Stock Clearance Sale. Get fantastic clearance bargains before we move to our new premises in Thatcham.

Gowrings Mobility Showroom, Newbury, Berkshire.
10am-4pm, Tuesday 10th, Wednesday 11th and Thursday 12th January 2012 

For more click here!

Scientists in MS "Breakthrough"


Source BBC:
From new drug therapies for cancer to artificial corneas to a vaccine for malaria, 2011 has been a year of remarkable medical breakthroughs.

One of the most significant breakthroughs came from research scientists in Edinburgh and Cambridge who have discovered what they say could eventually be a cure for multiple sclerosis.   To watch click here.

The Government must make reforming the care system a top priority - Telegraph

Source The Telegraph:
SIR – As a society we face a growing care challenge. We should celebrate the fact that we are all living longer lives, particularly disabled people and those with long-term conditions. But the unavoidable challenge we face is how to support the increasing number of people who need care. It is a challenge which we are failing to meet – resulting in terrible examples of abuse and neglect in parts of the care system.   For more click here.

Accessible Britain!

Welcome to Accessible Britain! Accessible Britain is a new, exciting organisation set up by disabled people for disabled people.

Accessible Britain has one main aim: To provide a forum for disabled people to share positive experiences of all accessible places throughout the UK.

Accessible Britain needs your reviews! To help develop this exciting new forum, please review any accessible place, hotel, holiday or extreme activity; for example, a country park, a sports centre, a tandem skydive, UK holiday destination or even your favourite place to go out for a coffee! Help disabled people access Britain!  Visit the website here: http://www.accessiblebritain.co.uk/


 

Fingolimod consultation closes soon


Source MS Trust:
Time is running out for replies to the consultation about fingolimod (Gilenya), with comments needing to be with NICE by 5 January.  For more click here.