Shaping the Future of Respite Care
RESEARCH NEWS
Cannabis Treatment Licensed for MS
MS Tablet Recommended in the USA
BRANCH AGM
The Hastings & Rother branch of the MS Society Annual General Meeting was held on 7th June 2010.
A good turnout of about 50 members attended our AGM, which was held at the Arthur Easton Centre, in the grounds of St. Michael’s Hospice, St Leonards.
As our chairman Margaret Howie had previously stood down, John Litchfield, Vice-
In it she mentioned the financial difficulties of the Branch, pointing out that, although we raised £37,000 in the past financial year, we had outgoings of £66,000. This meant that the branch had run at a loss of £29,000. As the large legacy bequeathed to us in 2000 had run out, this left us with no reserves and we had to make some very difficult decisions. Unfortunately, we had to make the support officers redundant to ensure the branch remained financially viable. However, we now have 4 new highly skilled support volunteers. Read about our new Support Team here.
The branch has been actively fundraising, with Cake Breaks, Sponsored Walks, Stationery Weekends, Davida’s Soup Luncheon, Afternoon Tea in Battle, Spring Fayre in Little Common, Chocolate Party & Table Top Sales (by SAMS) and Awareness Days at Priory Meadow, Tescos, Battle High Street, Veterans Day (Alexandra Park) and Classic Car events at Bexhill and Bodiam.
The branch President, Mrs Gladys Stewart, gave thanks to all volunteers and the Support Workers Helen and Jen. She talked about the NHS team that was available to members with MS. Treasurer Keith Mouland gave a very clear picture of Branch finances and stated that 44% of our expenditure had previously gone in salaries. Membership Secretary Susan Highwood said that we had 257 members including 172 with MS and that 50% of members were on email and thus saved the branch a great deal on postage.
Steve Manwaring, Director of Hastings Voluntary Action, our guest speaker, spoke
of the value of the volunteer effort and self-
Long serving member Beryl Carr then presented a Shining Star award to Renee Hodges for her tireless and unselfish service to the branch for over 30 years. Our thanks also went to Pat Sinden, Secretary, and Susan Highwood, Membership Secretary, who both stood down from the committee after four years for their invaluable service to the branch.
Shaping the Future of Respite Care
The MS Society’s Board of Trustees has announced that the Society will no longer directly provide residential respite care and will instead move to a more personalised system of support, providing people with more choice, control and equitable respite options.
The change comes after the year-
The results showed that, while the many people highly regarded the care and support
they received at one of the Society’s centres, overwhelmingly they want more individualised
services, more choice and holiday-
As people want more choice and control, the MS Society needs to be in the best position to help people with MS and their families understand what is available and make these choices.
To do this, the MS Society will develop its services to ensure that people with MS have access to personalised respite services and short breaks across the whole of the UK.
We will focus on providing better information, accrediting other services, giving grants, campaigning for better services and influencing other providers.
To achieve these important aims, we need to use our resources in the best possible way to secure the best outcomes for everyone affected by MS across the UK.
As a result, the MS Society will no longer directly provide residential respite care.
Plans will now be made to transfer the services of the MS Society’s care centres in England, including Brambles in Horley, to an alternative provider. Where an organisation can’t be found to take over the centre, closure will be the next step.
At the moment, all our centres are open for business and there will be no immediate change.
For more information on the Respite Care Review, including the Board Papers, go to: www.mssociety.org.uk/support_and_services
RESPITE CARE
... we provide short breaks for disabled people and carers in our Centres based around
the country. We offer respite care in a holiday environment so not only do we offer
24 nursing care on-
We have a wide range of breaks all year round so if you would like a full brochure get in touch us on 0845 345 1970, or we have loads of information on our website www.vitalise.org.uk
We offer group discounts and the MS Society sponsors over 100 breaks at Vitalise Netley Waterside House near Southampton and Vitalise Sandpipers in the north west, enabling guests to enjoy a break at a cost £100 lower than the standard brochure price.
Also if you know anyone that needs a break but might find funding it difficult, we can support people with either a direct grant towards the cost of a break or we can direct people to other potential sources of funding.
If you know of anyone who needs a break it’d be great to speak to you.
Many Thanks
Jim Armstrong
Marketing Manager
Knowing the law on Scooters etc
From Department of Transport Website (edited)
Class 1 – manual wheelchair, i.e. self propelled or attendant-
Class 2 – powered wheelchairs and scooters for footway use only with max speed limit of 4mph.
Class 3 – powered wheelchair and other outdoor powered vehicle, including scooters for use on roads/highways with a max speed limit of 8 mph and facility to travel at 4 mph on footways.
Where can class 3 vehicles be used?
On footpaths, pavements, bridleways and pedestrian areas at a maximum speed of 4 mph.
On most roads at a maximum speed of 8 mph.
They cannot be used on motorways, cycle lanes or bus lanes. Nor is it advisable to use them on unrestricted dual carriageways. If they are a 4 wheeled vehicle they must use an amber flashing light for conspicuity when used on dual carriageways.
Class 3 vehicles can only be used by a disabled person aged 14 or over or by an able bodied person who is demonstrating a vehicle before sale, for training a disable person or moving the vehicle for maintenance or repair.
Having an insurance policy is strongly advised to cover your personal safety, other people’s safety and value of the vehicle.
This is a very edited version of the D.O.T.’s information. To find out more go to their website at www.dft.gov.uk and click on ‘access for disabled people’ or contact them on 020 7944 8300 Mon – Fri 8.30 am – 5.30 pm.
RESEARCH NEWS
Cannabis treatment licensed for MS
The first symptom relief drug specifically for people with multiple sclerosis has been licensed by the MHRA (Medicines and Healthcare products Regulatory Agency.)
‘Sativex’ is an oral spray made using cannabis extract and is used to help alleviate
MS symptoms of spasticity. The treatment, which has been rigorously trialled over
the last six years, can be prescribed by MS specialists and should be delivered as
part of a multi-
Ed Holloway, Head of Care & Services Research at the MS Society said: “Sativex can help alleviate one of the most distressing symptoms of MS and its licensing is good news for people with progressive forms of the condition for whom drugs and therapies are sparse. We’d like to see it made available to anybody who might benefit.”
It’s thought the treatment is only effective in around 40% of people who take it and it becomes clear within a matter of weeks if it’s not working.
What is it?
Sativex (pronounced: sat-
Who is it for?
People with MS who have symptoms of spasticity. Current trials have not tested the effectiveness of Sativex in treating neuropathic pain.
How is it administered?
Sativex is sprayed on the under-
How does it work?
Sativex contains chemicals that belong to a family of chemicals called cannabanoids.
These chemicals are extracted from the cannabis plant. It is not known exactly
how Sativex works-
MS tablet recommended in the USA
The MS tablet FTY720 (fingolimod) has been recommended by the Food and Drug Administration
(FDA) advisory committee in the USA to treat people with relapsing-
The announcement gives an indication of what might happen when the decision is made by the equivalent authority in the UK, which is due soon. If licensed in the UK, FTY720 would be one of the first oral therapies, or tablets, to treat MS. The decision on whether the treatment should be licensed, and therefore widely available to people with MS, will be announced in the autumn.
ON OFFER
If there is anyone in need of a versatile electric single bed, which seems to do
most things except make the tea, please contact Jane on 01424 460797. We understand
it is in very good condition-