CBD Oil Talk on Thursday 16 January at 11.45am

CBD oil seminar with John Wood

Thursday 16th January 11.45am

Where? In the café area at the Sussex MS Centre

Could CBD Oil give you relief? John will cover what CBD oil is, how it works and how it may benefit you.

We want to offer a space for our members to learn a little bit more about how CBD oil may be able to help with pain management, where we can encourage an open discussion about the potential benefits of using CBD oil.

John

John is a Personal Trainer and takes the oil himself to relieve his anxiety.

CBD helps him when nothing else works and has made his life more manageable. He loves to teach others how to improve their health and gives seminars locally.

All welcome, please do pop your name on the list at reception so that we have an idea of how many people may be attending.

Bladder and Bowel Challenges – An introduction. Thursday 28 November

Bladder and Bowel Challenges – an Introduction to Effective Therapies with Siobhan Freeman

Thursday 28th November at 11.00am

FOUR OUT OF TEN PATIENTS ARE NEVER ASKED…

Walking difficulties, vision problems and fatigue are well-known symptoms in patients with MS.

Bladder and bowel dysfunction are less know – or at least less discussed and addressed.

Bladder and bowel dysfunction often come together. The impact this can have on quality of life for people with MS is huge and can result in both anxiety, depression and social isolation.

Still, many find it difficult to talk about these issues or feel too embarrassed to mention it to a doctor or nurse.  Due to the stigma surrounding these conditions they would rather choose to cope with their problems than try and address them.

As a matter of fact, four out of ten MS patients have never been asked about bladder and bowel problems during contact with healthcare providers.

Let’s remove the stigma and start talking about bladder and bowel dysfunction and the solutions that are now available to help to improve patient’s wellbeing and quality of life.

My name is Siobhan Freeman and I work for Wellspect manufacturers of Lofric catheters and Navina bowel management systems.

My role is to develop awareness of therapies that can make a real difference in patients’ lives.

If you are intending to come to this talk please let us know so we get an idea of numbers: members only.

Shoreham Port lend a hand

Staff members at Shoreham Port are encouraged to take one day each year away from their regular working week to volunteer for a charity of their choice.

This provides staff the opportunity to give something back to the local community in which they live and work. This week, Lynn Archer-Matthews, Finance Executive volunteered at Sussex MS Centre located at Southwick Recreation Ground; a stone’s throw from Shoreham Port’s Nautilus House office.

On Friday, Lynn was taken on a tour of the Sussex MS Centre and had a busy day working in the site’s two gardens, clearing weeds and making the gardens more presentable for the many members they welcome each day.

I really enjoyed rolling up my sleeves and getting stuck into some gardening at the Sussex MS Centre today.

The centre is a fantastic local charity and I’m very thankful to be able to help out in any way.

Lynn Archer-Matthews, Finance Executive

It has been fantastic to have Lynn helping out with some gardening at the MS centre for her staff charity day. Sustaining our front and rear gardens is important as it’s a really nice place for our members to come and relax.

While some of our members are keen gardeners and they volunteer when they can, their MS restricts what they are able to do energy wise. We really value the extra support at key times during each season to ensure the garden is well kept. A beautiful green space here also contributes to our members mental health.

It is great to have a connection with Shoreham Port and we look forward to more voluntary days.

EJ, Centre Manager

Collection Boxes Appeal

“Look after the pennies and the pounds will take care of themselves!”

As you know we live more and more in a cashless society.

Collection boxes are becoming relatively obsolete. Takings from collection boxes have gone down in the past few years by many thousands at the Centre and we see it on our balance sheet decreasing further!

This is another call to action for which we’d be very grateful – if you know of a shop, café or pub (or anywhere) that might possibly take a collection box and you’d be prepared to take it there and collect it when it’s full please let EJ or Jane know! We can give you an official letter of authorisation to do this.

Co-op Southwick Local Cause

We are thrilled to have been chosen as one of the Co-op Southwick’s Local Causes for 2019.

Robbie and his team at the Co-op have already shown our Centre so much support so far this year, from supporting us at our Open Exhibition Evening in May, to providing us dates throughout the year to hold collections at the Southwick Co-op, and even getting together a team of Co-op staff to join us on our annual sponsored bike ride in June. So far this has raised over £1000!

Yes you can help!

Become a member: Co-op gives 1% of what its members spend on Co-op branded food products in stores and selected services, as well as the money raised from carrier bags and scratch cards to local causes– like us– The Sussex MS Centre.

Choose the Sussex MS Centre as your local cause: Once you become a member, or for existing members, simply go online to coop.co.uk/membership and search for Sussex MS Centre/No. 28440

Volunteer for a collection: Our next collection dates at the Southwick Co-op are: Saturday 27th July and Saturday 14th September. Could you spare a couple of hours to come along and represent the Centre on either of these dates? To find out more email events@mssussex.com

DMD Ocrevus Approved

In our autumn newsletter 2018 we wrote of how the NHS had reversed its previous decision and now recommends Ocrelizumab (drug name Ocrevus) for the treatment of relapsing remitting MS.

Disappointingly however, at the same time, NICE announced that Ocrevus was still too expensive for people with Primary Progressive MS (PPMS).

The good news is that the NHS struck a deal with Roche (the pharmaceutical company) and patients with PPMS are now able to access the drug. It is estimated that 10,000-15,000 people have Primary progressive MS (PPMS) in the UK, of whom around 2,700 people could be eligible for treatment with Ocrevus.

If you have Primary Progressive MS and you have started to take Ocrevus please feedback to us. We welcome all feedback about drugs and you can contribute by going on our Drugs directory as someone that can talk with other members about a drug you have experience of.

To find out more information about Ocrevus head to: www.mstrust.org.uk/a-z/ocrevus-ocrelizumab

Sponsored Bike Ride

On Sunday 8th June we held our annual 20 mile sponsored bike ride, from Shoreham Airport to Slinfold Village hall.

This year we had an amazing turn out with teams from Southwick Co-op, Rossetts Vans Worthing and many more old and new faces. We were up against a wild wind and frequent rain showers… However all of our wonderful cyclists put on a cheerful face and made it to the end for lunch at Slinfold!

The day could not have been such a success without our incredible troop of volunteers, that took on roles marshalling points along the route with refreshments, our support cyclists, and our village hall volunteers feeding our hungry teams as they arrived at Slinfold.

It was a great day out for everyone; a huge thanks to all that participated and volunteered. Once all the funds are collected we hope to reach over £4000 for this event!