Tuesday, 21 July 2015

Wheelchair services in England 'are failing'

Source BBC:

One of Great Britain's most successful Paralympians has said wheelchair services across England are failing on every level.

Baroness Tanni Grey-Thompson has launched a new national charter to improve services across the country.  Read on.

Plegridy approved for NHS in Wales

Source MS Trust:

Plegridy (peginterferon beta-1a) has been approved as a treatment for relapsing remitting multiple sclerosis on the NHS by the Welsh drug regulator the All Wales Medicines Strategy Group (AWMSG).

Plegridy should be available on the Welsh NHS within three months, so neurologists should be able to prescribe it from late October 2015. Plegridy was approved for NHS treatment in Scotland in January. The regulatory bodies for England (NICE) and Northern Ireland have not yet considered Plegridy.  Read on. 

Have your say on the NICE quality standard for MS

Source MS Trust:

Calling all people with MS and health professionals! We need your help to shape our response to a consultation on the key areas for improving services for people with MS.

Following the publication last year of the NICE Guideline for the management of MS in primary and secondary care (Clinical Guideline 186), NICE is now consulting on the key priorities that will help drive service improvement and improve outcomes for people with MS. These are set out in the draft NICE quality standard Multiple sclerosis in adults: diagnosis and management.  Read on. 

Wokingham man chosen to improve NHS communications

Source Get Reading:

Paul Volkaerts is one of 17 chosen to develop mobile technology aimed at increasing NHS communication speeds.

A Wokingham man has been chosen to lead the way in a programme to improve NHS hospital communications.

Paul Volkaerts, 47, is one of 17 'fellows' selected for the NHS Innovation Accelerator Programme, due in part to previous mobile technology developed by him already used in 20 NHS trusts including Royal Berkshire Hospital.  Read on. 

Thank you to our young supporters!

Many thanks to two of the youngest members of our Fundraising Team, Maya & Faith, who very ably assisted Henriette & Marnie with giving out stickers at our collection in Caversham on Saturday. You are never too young to get involved!

Thanks again girls - your lovely smiles helped us to raise lots of money to help local people with MS!

Wokingham Neuro Aqua Aerobic Session

Wokingham Neuro Aqua Aerobic Session.  Tuesdays 8 - 9pm, cost £5.  Carnival Pool, Wokingham, RG40 2AF.  Free car parking after 6pm. 

Meeting point is in the entrance of the leisure centre at 7.40 - 7.50pm.  If you are interested in coming along please contact Emma Shaw emma.shaw@optalis.org

Monday, 20 July 2015

Are you interested in being involved in research?

If you are able to walk on your own (with or without an aid such as a stick or crutches) and are able to participate in physical activity, you may be interested in the following project.

Researchers at Brunel University London are conducting a study to look at the relationship between different ways of measuring walking and its impact on everyday life.

The study involves completing a series of questionnaires, a walking test and wearing a pedometer for a week. You do not need to change any of your daily routines during the study.

If you are interested in knowing more about this study please contact Mohamed Abdul, physiotherapy manager who can give you further information.

Thanks for your interest.

Friday, 17 July 2015

A Scottish GP and former government advisor is facing charges of misconduct

Source BBC:

A Scottish GP and former government advisor is facing charges of misconduct over his treatment of a number of patients, including a child.

Dr Tom Gilhooly runs the Essential Health Clinic in Glasgow which offers alternative treatments for people with multiple sclerosis (MS) and other autoimmune conditions.  Read on.

Government must do more to improve neurological services, report shows

Source MS Society:

A new report by the National Audit Office (NAO) has shown the government has made patchy progress in meeting objectives for improving services for people with neurological conditions.
Progress was reviewed against recommendations made by the House of Commons Public Accounts Committee in 2012.  Read on. 

NHS Call to Action - 21st July

Message from NHS Berkshire Health Network: 

"We’re excited about the annual meeting and engagement event next week as it’s a great opportunity for us to hear your thoughts about our new primary care strategy. The event takes place on Tuesday 21st July in the centre of Reading and there are still some places left if you’ve yet to register and would like to join us.
To register, simply reply to ppiteam.berkshirewest@nhs.net with your name and contact details. For more informatio...n about the event, visit http://www.nwreadingccg.nhs.uk/nhs-call-to-action
Thank you to those who have already registered. This meeting is open to everyone so please disseminate to your contacts and associates on our behalf.
We look forward to seeing you on Tuesday!
Best wishes from
PPITeam for Berkshire West CCGs"

Do you want to participate in a study? - The effect of high flavonoid pure coca on fatigue and glycaemic response in people with MS

Latest news from Down Under

MS Research Australia latest newsletter.  Read here. 

Congratulations Trishna!

Trishna has been named on of the Women of the Year Foundation's Woman of Achievement 2015

"I've been named one of the Women of the Year Foundations's Women of Achievement 2015!? 🙈 Didn't want to say anything until I had the invite in my hand as it was... posted to MS Society HQ for me earlier this week so I was waiting for it to be forwarded to me.. Totally gobsmacked isn't the word!"

Asian MS Newsletter

A new Asian MS Newsletter has been produced, the editor is Trishna Bharadia.

"Asian MS is a national support group for Asians with MS, their carers, friends and family. We seek to increase awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. We produce online and  printed information in various languages and offer an interpreting service."

To read click here

Wimbledon Draw

Just one day since the Wimbledon’s men’s winner was announced we have winners at the Centre in our tennis draw. Thank you for everyone who took part. The lucky winner of Digital Radio, worth £120, is Stephen Panting. Thank you for taking part!

Caversham Street Collection 18th July

Please could you help us with Caversham Street Collection on Saturday 18th July. If you can help, please contact Kirsten on 0118 901 6000 or email kirsten@bmstc.org

Wednesday, 8 July 2015

Study reveals brain network responsible for cognitive changes in multiple sclerosis

Source EurekAlert:

JULY 8, 2015 - DALLAS, TX - An estimated 2.3 million individuals are living with multiple sclerosis (MS) worldwide. Approximately half of all individuals with MS experience changes in cognition such as impaired concentration, attention, memory, and judgment. The underlying brain basis for these deleterious effects has been largely elusive. New findings published yesterday in Neuropsychology reveal that decreased connectivity between network-specific brain regions are to blame for the central deficit common to the various cognitive changes associated with MS, slowed cognitive speed.   Read on.

BMSTC shop reopens for business

Have you visited our revamped centre shop yet? In addition to being redecorated, we have given it a bit of va-va-voom by introducing some new items and a display cabinet. Ros has been scouring the internet to find items that folk living with MS may find useful to sell in the shop. These ‘yellow ticket’ items include:

• Bamboo gentle grip socks
• Cooling neck ties...
• Grabber sticks
• Blue badge covers
• Folding walking sticks

 The new cabinet is being used for more valuable items. Ros is currently displaying some of her handmade silver jewellery items, a 10% donation will be made to the centre from sales.

The new lines are proving popular. Buying in bulk means we can offer these items at a competitive price whilst generating a modest ‘income’ for the centre.

If you have ideas of things to stock in the shop email Ros on mybox@mybox.plus.com or leave her a note at the centre.
Carol, Doreen, Ros & Faye welcome donations of books and good quality household items, bags, puzzles, unopened toiletries etc. to sell in the shop. We have recently taken two Royal Albert tea sets to an auction house and hope to raise money from their sale. Please note that, for health & safety reasons, we cannot accept any electrical items unless brand new/unused and in the original packaging.

If you know of someone who might be interested in having their craft items or goods/services in the glass cabinet please let us know so we can consider all suggestions.

Ros Hatt

Looking for something to do this Saturday night?

Then look no further! Wayeta and Andy are organising the fantastic Music for MS in aid of BMSTC. Come down to the Wycliffe Baptist Church on Saturday 11th July from 7pm to 10pm. Just £2 for entry – see you there!

MS telephone support service wins development award

Source MS Trust:

A nurse-led telephone triage/advice service for people with multiple sclerosis in London has been awarded a place on an NHS England programme to make innovative ideas more widely available.

NeuroResponse was developed by Bernadette Porter, MS Nurse Consultant at the National Hospital for Neurology & Neurosurgery. The service includes a telephone support line staffed by MS specialist nurses, email advice for GPs and video links to community teams around London.  Read on.

What do you think about the traffic lights being switched off at Broad Street & St Mary's Butts?

15th July 2015 – Reading Borough Council Launch of lights switch-off consultation
Arranged in partnership with the Access & Disability Forum.

Members of the public are invited to give their views on the lights switch-off proposal at the Broad Street / St Mary Butt’s junction in the town centre. There will be a walk through the lights at the Broad Street / St Mary’s Butts junction, starting at 2pm from the Readibus stop outside John Lewis, then back to the Civic Centre to the Mayor’s Parlour at 3pm.

For further information, please contact Helen Bryant: helen.bryant@reading.gov.uk

For sale Panthera wheelchair

For sale – Panthera wheelchair (self-propelling) . Ultra lightweight titanium frame. Can be collapsed for travelling. £300 ono. Please email pippa@bmstc.org if you are interested.

People with disabilities should get more state money, says UK public

Source MS Society:

Disabled people should not have their benefits cut – in fact they should receive more support from the state, according to an MS Society survey.

A poll of 1,000 people by One Poll found that 67% agreed disabled people should receive more financial support from the state, to help them live independent lives.  Read on.

Would you be interested in a MS Tai Chi Class?

We are thinking of setting up some MS Tai Chi for health classes here at the Centre in September time, what do you think...interested.....?   Please email pippa@bmstc.org or let our physio team know when you are next in.  Thank you.

Professor Alastair Compston given prestigious research award

Source MS Society:

Professor Alastair Compston has been awarded the first ever ‘Richard and Mary Cave Award for Services to People with multiple sclerosis’.

Professor Compston’s commitment and perseverance from the early 1990s led to the development of Lemtrada (alemtuzumab) – one of the most effective first line treatments ever approved for MS. For some people, using the drug has meant they’ve been able to live symptom free for up to ten years.  Read on.

Waitrose Maidenhead

Next time you shop at the Maidenhead branch of Waitrose don’t forget to use your green token to vote for BMSTC. You can vote for all of July and help us win up to £500!

Roche gets boost as multiple sclerosis drug works in big trials

Source Reuters:

A drug being developed by Roche to treat multiple sclerosis (MS) met main and secondary objectives in two studies, boosting the company's hopes of expanding beyond its core cancer franchise.

The studies of MS treatment ocrelizumab showed the drug, which is injected, slows relapses and the progression of the disabilities that come with the disease when compared with Rebif, an established injectable drug, the company said on Tuesday.  Read on

Independent Living Fund: What is going to happen now?

Source BBC:

Started in 1988, the Independent Living Fund (ILF) has provided financial support to people with disabilities across the UK.

From Wednesday, 1 July, it will no longer exist in England, while Wales, Scotland and Northern Ireland have made different plans for the fund.

ILF users in England have been protesting since the closure was announced in 2010.  Read on.

Oxygen and the Brain by Prof. Philip B James


Professor Philip B James has published a book, "Oxygen and the Brain: the Journey of our Lifetime" which will be serialised in the Telegraph later this year.

For more information click here.