MS Newsletter Jan – Mar 2019

Posted January 10, 2019 by Karen Jones & filed under MS News.

Registered Charity Nos 1139257/SC041990 Registered as a limited company in England and Wales 07451571

Dear Friends

The weather couldn’t have beenworse. We held our collection at Millets Farm at Frilford Heath on a December day which was bitterly cold and, for most of the time, pelting with rain.

Thankfully, the garden centre management broke the usual rule that we collect outside, and allowed our later teams to stand in the dry, if not totally protected from the cold.

Alan Cusden, our fundraiser,writes: “I have been involved inMS collections for 29-plus years and I have never had to collect inweather as bad as this.”

Despite all the problems, the collection paid off handsomely, with £395.28 being raised for our funds.

Everyone turned up promptly todo their hour’s stint – our thanks to all who helped.

Particular praise must go to Alan and Margaret Scully, who braved

Oxford and District Group Newsletter

January – March 2019

the elements and stayed all day making sure everything ran smoothly.

Our next collection is at Tesco at Cowley Retail Park on Saturday, 26th January, and no-one seems to have been put off by the awful December weather.

If you would like to join the team on this and future collections, call Alan on 01865 723420 or email alancusden@yahoo.co.uk

Those with good memories will recall that a few hours after our collection at Millets in December 2017, we had six inches of snow!

100 CLUB WINNERS

Winners of the 100 Club draw in December were Shirley Ray (£10.80), Dorothy Warner (£5.40) and Marilyn Chipperfield (£1.80).

To join the club, contact our treasurer, Brian Hawtin – his details are on Page 8. A form is appended to this newsletter

HITTING HEIGHTS

Our Open Day foot therapist, Neil Lambert, presented us with a cheque for £1,404 at our December Open Day.

This was the amount he raised from his second Three Peaks Challenge – tackling the mountains of Snowdon, Scafell Pike and Ben Nevis – in 24 hours.

Members will recall that on his first Three Peaks Challenge, he raised £3,530, which he shared between us and Sobell House hospice at Headington.

We congratulate Neil on a wonderful achievement and thank him for his continuing support to our group, not only from his mountain climbing but his valuable therapy work at our monthly meetings.

EXERCISE CLASS

Members are invited to join a weekly exercise class. It is organised by Ellen Armitage, a neuro-physiotherapist and trained Pilates instructor, and is held at Cumnor on Saturdays during term time from 9 to 10am.

The exercises are designed and tailored for people with neurological conditions such as MS, and are intended to

encourage flexibility, strength, balance, posture, mobility and a sense of general well-being.
If anyone is interested, please call Ellen on 07775 419512 or send an email to neuro-pilates@outlook.com

for more information.

OPEN DAYS

MS nurse Ana Cavey will be our guest speaker when we start our new season of Open Days in February.

As we know, a lot of research is going on into MS, some of it in Oxford, and Ana will bring us up to date on the latest work.

Usually at Open Days, we like to steer away from conversation about MS and talk about other things, but a talk on research was requested by members, so we hope there will be a good attendance.

MS Society rules no longer stipulate that we must hold an annual meeting with an election of officers, but we will hold an annual review at our March Open Day, with an open session where members can say what they want.

We would like to make the open session as light-hearted as possible, so please come along with plenty of funny stories!

Above, Members created impressive flower arrangements at our November Open Day, under the guidance of Brenda Franklin.

Below, therapist Neil Lambert presents a cheque for £1,404 at our December Open Day to our co-ordinator, John Chipperfield, following his successful Three Peaks Challenge.

‘LEGALISE DRUG’ CALL

A man from Oxfordshire is at the forefront of a campaign to get a new drug legalised in the fight against MS.

Al Rogers, from Bicester, travelled to Westminster to lobby MPs and press for ocrelizumab to be made available.

After his story appeared in the Oxford Mail, several of our members decided to support his campaign.

In September, NICE, the National Institute for Health and Care Excellence, approved the drug for treating relapsing MS, but not for primary progressive MS, on the grounds it cost too much for the limited benefits it would bring.

Mr Rogers said: “I was honouredto be able to share my story with MPs. I hope it will help with the fight to make ocrelizumab available on the NHS urgently.

“If it was available to me, it couldgive me the chance of stayingout of a wheelchair for longer.”

He and the MS Society are calling for NICE, NHS England and drug manufacturers to agree a deal which makes the drug available at a price affordable by the NHS.

More than 21,000 people have

signed a petition calling for the drug to be legalised for all with MS.

Genevieve Edwards, the MS Society director of externalaffairs, said: “Living with primaryprogressive MS can be painful and exhausting, and symptoms will gradually worsen over time.

“This event gave WestminsterMPs the opportunity to hear directly from people with progressive MS about the desperate need for an effective treatment.

“We hope they will use theirinfluence to persuade NICE, NHS England and manufacturers to come to an agreement.”

NEW HEATING

A new heating system is being installed in the Northcourt Centre at Abingdon, where we hold our monthly meetings, and should be ready when we next meet there, in February.

DONATIONS

Recent donations to our group funds include £105.41 from Alison Wiltshire and her colleagues, £54.50 from Patricia and Stephen Michael and £25 from Hilary Bradley. Our thanks to them all for their support.

There was singing and dancing to the music of Diane and Ian Woods at our Christmas Open Day.

FESTIVE TREAT

We enjoyed our usual festive treats at our December Open Day. Diane and Ian Woods set us off in the right mood with their customary brand of popular music. We joined in the singing of popular songs and Christmas carols to the accompaniment of their organ, and there was plenty of dancing too.

We then sat down to a splendid Christmas meal prepared by Sylvie Lambertstock and her wonderful team. There were hats, crackers and plenty of laughter to add to the occasion.

The three first prizes in the draw were three wooden keepsake boxes skilfully crafted by our regular supporter, John Winn. They were gratefully received by the three winners, and we thank John for his continuing support.

The remaining prizes, more than 30 bottles of drink, were spread widely among members, ensuring that few if any of us went through Christmas without a taste of the hard stuff!

Another kind gesture that day came from Patricia and Stephen Michael, who put on sale pots of hyacinths they had grown, in aid of our funds. Our thanks to them.

After the meal, there were the usual therapies and plenty of time for members to discuss their Christmas festivities with each other over a cup of tea and

coffee and, if we still had room, a slice of cake.

Our thanks to Brenda Franklin who led a Christmas flower craft workshop at our November Open Day.

BRIEFLY

MS nurse advice line
01865 234461
(answer machine monitored 9am- 5pm, Mon- Fri) or email ms.advice@ouh.nhs.uk

MS specialist nurse

Sue Barnden

01865 737252 (direct line)01865 737465 (main office)

Continence nurse

(bladder and bowel nurse)

01865 904303
MS Society helpline

Freephone 0808 800 8000 Carers Oxfordshire

0845 050 7666

NHS Direct – 111
Medical Emergency – 999

Contributions to our quarterly newsletter are always welcome.

John Chipperfield

01865 374877

3 Lambs Close, Oxon, OX5 2YD mjpchipperfield@yahoo.co.uk

All views expressed in this newsletter are individual and not necessarily the view or policy of the charity or its supporters.

2019

Sat. January 26 Fri. February 1

Fri. March 1 Fri. March 23 Fri. April 5 Fri. May 3 Fri. June 7 Fri. July 5

Fri. August 2

Collection at Tesco, Cowley

Speaker – MS Research Nurse Ana Cavey

Open Day, Northcourt Centre, Abingdon. 10am- 4pm.

Annual Review and ‘Have Your Say’