Posts by EJ Stuttard
Aviva Crowd Funding for our Centre!
Cocooned at home, but not alone
We want to give strength and support to all those living with MS who must remain sheltered at home by building an active, on-line network.
If you can help our cause, please do.
Please support us by clicking on the link below. By selecting a reward you can be assured of helping us in our dream to engage with more of our members, more regularly, helping to combat feelings of isolation.
Please share this crowd funder info amongst your network. Any pledge will help us to reach our target to fund and develop our online services and support our members until we can fully reopen again.
https://www.avivacommunityfund.co.uk/sussex-ms-support?tk=331b88d9b580b32e28a6ed2d211a468625de8801
Chat Together by Zoom!
In addition to our classes Lynne Shepherdson is hosting a weekly Zoom space where members can chat together just like you would in the Centre’s cafe.
Held every Thursday at 12pm – this is a pre- lunch or early lunch break in a fun, safe space, where you can chat away and catch up with old or new friends from the Centre.
Its especially good if you are still very much in lockdown and haven’t seen people in a while! Please note that Lynne will be away on Thursday 17th September so there will be no chat that day!
To join the group each week go to: https://tinyurl.com/y8mweaqx and then type the password cupcake
Although this is free any donations will be gratefully received and these can be made to: Sussex MS Centre, Lloyds Bank, Account number: 01813557 Sort Code: 30-98-74
New Drop-in Zoom Classes start this week!
All classes are suitable for MS but can help everyone. Everyone is welcome.
Participants must do only what is comfortable and safe for them.
Depending on demand, classes may run for more than the initial four weeks.
To access, you will need to sign up by phone, computer, ipad or tablet to the free website, Zoom.
All classes and groups are still free but donations are very welcome.
Seated Yoga for Every Body with Louise Windsor on Wednesdays at 11am-12noon
Yoga can help manage anxiety and develop peace of mind. Its physical benefits are an increased mobility range, strengthening of muscles, and improvement to posture, balance and the communication between brain and body. This seated class will include gentle movement for all abilities, breathing exercises and meditation to help calm the nervous system and soothe the mind. Louise has been running Chair Yoga classes at the Centre for the past 6 years.
To join the class go every time to https://tinyurl.com/ycvq85zs
then type the password: 968415
Pilates with Miki Floyd on Thursdays 10.30-11.15am
Miki, our Pilates instructor, has been teaching live online classes since lockdown. This class is tailored specifically for MS. Its aim is to provide routine, keeping you active during this period of isolation. You can work from the floor or on a chair, if you are not very mobile. You can even do the class from your bed.
To join the class go every time to https://tinyurl.com/yc5ts3yz
NB There is no password.
Seated Physio Exercise with Viola Santa on Fridays at 12-12.40pm (not 2, 9, 16 October due to holidays)
Exercises are uplifting, easy to follow and aim to improve flexibility, strength, posture, balance and body awareness. Some exercises in standing may be included, if attendees are able. Viola, our physiotherapist has been teaching one to one physio sessions online since lockdown. If you have questions about the class, would like to book a one to one session or want help with zoom, please email her on violapsanta@outlook.com
To join the class go every time to https://tinyurl.com/yawpyegu
then type the password: exercise
Classes and groups are still free but donations are very welcome either by Bank transfer to Sussex MS Centre, Lloyds Bank
Sort Code: 30-98-74, Account No: 01813557
Please use one of these references: /Yoga/Pilates/Physio
There is no need to enter your name. We will see your name on our bank statement.
or you can visit virginmoneygiving.com/fund/Donation-for-Classes and there are suggested donations of £5 for one class or £20 for four classes to choose from – You can specify a completely different amount if you prefer.
Benefits Update June
Just a few words to reassure anyone who is worried about their benefits situation. The main message is that the DWP currently has a lot more to worry about than PIP, DLA, Universal Credit on grounds of sickness and AA, so all benefit awards have been extended and all reviews have been suspended. The slight fly in the ointment is that the DWP has been unable to stop sending out computer-generated letters. So, if you get one with a deadline, ignore it for the time being. (More details below.)
Headline News
- There will be no reviews or re-assessments for ESA or PIP until 17th June. For Universal Credit, on grounds of sickness, the reviews are suspended until 24th June.
- New claims for PIP and ESA will be processed and backdated to the application date BUT there will be no face-to-face assessments for the next six months.
- For Universal Credit on grounds of sickness there will be no face-to-face assessments until June 17th, 2020.
- If your benefits award was due to end, it will be extended.
- There will be no transfers from DLA to PIP until after 17th June. Any letters saying that you must claim PIP before this date can safely be ignored as can follow-up reminder letters.
- All time limits for returning forms have been extended
Flies in the ointment
- The DWP has not been able to stop letters with deadlines from being sent out.
- The DWP has said that face-to-face assessments will be replaced by paper or phone assessments. If you are notified that you will be assessed by telephone and would like to talk to a member of the benefits team before this happens please contact yasmin.benefits@mssussex.com to arrange for one of the benefits team to either call you or to invite you to a Zoom meeting. Be aware that we have heard that people have been receiving such calls at short notice, whereas under the PIP regulations the DWP must give you 7 days’ notice.
- Phone calls to the PIP and ESA helplines are taking even longer to answer than usual.
Problem areas (only affecting a few people)
- If you currently get Contributory ESA and are due for a review, you may have to apply for a Mandatory Review. If you are in this situation, please contact the benefits team by emailing yasmin.benefits@mssussex.com She will arrange a telephone or internet chat to talk you through it.
- If your condition has changed or for any other reason you think you are entitled to a higher rate, your claim may take longer to process than usual. However, you should still apply now because, even if it takes longer to come through, your higher rate will be backdated. Again, if you are in this situation, contact the benefits team by emailing yasmin.benefits@mssussex.com and she will arrange a telephone or internet chat to talk you through it.
New Claims:
If you have not previously claimed PIP or Universal Credit on grounds of disability but would like to, please contact yasmin.benefits@mssussex.com to arrange for a member of the benefits team either to call you or to invite you to a Zoom meeting. All areas have now transferred from Employment Support Allowance (ESA) to Universal Credit on grounds of disability. Please note that we have no experience of claiming Universal Credit for people who have lost work due to the lockdown.
We are still here for you
Although the benefits team are unable to come into the Centre, we have had successful meetings over the phone and via Zoom on the internet. If you are worried about anything to do with you benefits, please email yasmin.benefits@mssussex.com and we will arrange for one of the benefits team to talk to you. We are all in self-isolation, so the chat will be by phone or internet.
If you want more details and the most up-to-date information, look at these links on the internet.
https://www.gov.uk/coronavirus
Note: things are constantly changing, and both these links are being updated regularly, so the information they contain is likely to be more accurate than our notes above.
Most of all
Don’t worry. Stay safe. Take care. And stay well!
The 2.6 Challenge for Sussex MS Centre
Calling Home Heroes!! The Coronavirus outbreak has had a devastating effect on the Sussex MS Centre. Like many charities across the world, the Centre is facing much uncertainty in the wake of this unprecedented pandemic.
With fundraising events having to be cancelled, and members unable to attend their regular sessions and contribute towards therapies, our income is significantly down and we are reliant on the generous donations of all. Rising to this challenge to help us would be one way you can donate
Its not too late to raise money for us during these difficult times of lockdown when we still have staff working and no income. We need all the support we can get from you to help us re-open in the coming months.
From Sunday 26 April, you are being asked to dream up an activity based around the numbers 2.6 or 26 and fundraise. The Challenge is open to anyone of any age – the only requirement is that the activity must follow the Government guidelines on exercise and social distancing.
Its simple – all you have to do is:
- Think of your 2.6 activity ( in minutes, secs)
- Take Part
- Donate to the MS Centre
If you can, record your activity for social media or take a short film or take photos and send it to your friends and family for sponsorship/donations.
Ideas for things you could do – the world is your oyster – we aren’t looking for superheroes, we’re looking for Home Heroes!!!
- 26 hops around the house
- Walking up and down the stairs 26 times
- gardening for 26 minutes
- Baking 26 fairy cakes
- Do 26 Star jumps
- Recite 26 poems
- Complete 26 laps of the garden on foot, scooter or roller skates
- Hold the plank for 26 seconds or 2.6 minutes (that’s 156 seconds!)
- Sing 26 songs!
- 26 minutes of yoga/pilates
- Get your dog to walk 26 miles
You can set up your Virgin Money Giving page by heading to: www.virginmoneygiving.com
- Go to ‘Fundraisers’
- Click on ‘Create your fundraising page’
- After entering your details, you will need to select a charity, search for: Sussex MS Centre
Get family and friends to donate and sponsor you to complete your challenge and donate through your VMG page. If you can – film yourself completing you 2.6 Challenge activity and upload it online with the hashtag #Twopointsixchallenge
Share your photos /videos with you so we can share on Facebook and Twitter!!
Thank you so much for your support – every single penny counts!!
Letter to Members and Friends
Dear Members and Friends,
We want to keep in touch with you during this difficult period of lockdown. We miss you all so much! We hope this finds members, carers, friends and families safe in these troubling times. Many of you are contacting us via social media but we want to pop all the information we have been putting out there on FaceBook and Twitter in one place on our website.
As you know, the Centre is closed until further notice and there are no staff on site. During lockdown you can contact us on our dedicated mobile: 07561 648 044. This phone will not be answered but, if you leave a message, we will get back to you as soon as possible. Please leave your name, number and a short message clearly so we can respond. There may be things we can help with or signpost you towards.
Many members rely on the Centre and the friendships made there to help cope with life’s challenges. If you would like to speak to any of your friends but don’t know their phone number or how to contact them, please ring the mobile number above or email jane.taylor@mssussex.com and we will contact them for you.
Meanwhile, some of our services are being offered in new ways by our therapists and teachers (who are all self employed) as well as by our benefits team, including:
Counselling: Lynne Shepherdson and Nick Marsh are available by telephone or Skype – if you are interested in speaking with either of them, please contact us on the Centre mobile (above), leaving your name and telephone details and who you would like to talk with. For further emotional and psychological support you might like to join the special WhatsApp group created by our Social Committee lead, Nikki Manchee. Please contact Nikki directly on FaceBook.
You can also ring the MS Trust on 0800 0302 3839, or the MS Society on 0808 800 8000. Both are free of charge. You may not get an immediate answer, but all services are doing their utmost to get back to you as soon as possible. They can also be contacted online.
Acupuncture: Our acupuncturist Evette has put together a YouTube video of her showing useful acupressure points. Visit https://tinyurl.com/rzpjodx to see it.
Physiotherapy: If you have a question about a physical- or movement- related problem or would like advice on exercise or management of symptoms, Viola, one of our physiotherapists, is offering one-to-one exercise sessions online. Sessions (offered on a donation basis) will be conducted by Zoom. Please contact Viola on violapsanta@outlook.com or leave your name, number and interest on the mobile.
Pilates: Our Pilates teacher, Miki, has a recording of her class on her YouTube channel, ‘Micaela Floyd’ (free to subscribe). The MS session is at: https://youtu.be/C-pvCpBrQM8
Yoga: Our Seated Yoga and Yoga teacher, Louise, is offering weekly Wednesday Morning Yoga Practice online via Zoom at 11am – 12noon for anyone wishing to join. Intended for all abilities the class is a mix of Hatha Yoga, Qi Gong, breathing exercises and relaxation. You are welcome to join but it is your responsibility to miss out anything that doesn’t feel comfortable for you. Suggested donations range from £2 – £8, but please join for free if money is an issue. To book, email louise@createyourself.co.uk or ring 07779 150 886.
Louise may also run an online Tuesday Meditation Session 11am – 11.30am if there is sufficient demand. If you would like to join this, please register your interest with her using her contact details above.
Benefits Help: We’re very aware that in the current climate, some of you will be worried about finances. Our voluntary benefits team is still here for you being led by Linn MacCallum Stewart. If you have any questions about benefits, please text or ring the Centre mobile with your name and number mentioning ‘benefits’ or email yasmin.benefits@mssussex.com and she can arrange for someone from the team to talk to you by phone or Zoom.
Other useful services to help during lockdown
- Most pharmacies will deliver prescriptions to you – just ask them!
- Food: We have been advised of two wholesale food suppliers that are now offering home deliveries.
Elite Fine Foods Newhaven: for next day delivery call 01273 616402 between 9am and 2pm to place your order. Minimum £50 spend. NHS and the vulnerable will be prioritized. To see their range, visit https://www.elitefinefoods.co.uk/
Adams Wholesale Food Suppliers: call 01903 282 220 or visit https://www.adams-wholesale.com to register for an account. Supplies arrive within 24 hours.
Meanwhile, we all must keep ourselves and one another safe by staying at home, but there are still ways of helping your MS, whether it’s continuing your exercise routines, cooking creatively, reading a good book, mindfulness or gardening – and, if you have no outdoor space, spending time outside in parks.
Befriending: Do remember to keep in touch with one another – a weekly phone call can make all the difference. If you’re concerned about anyone you know from the Centre, please let us know. You might also like to know that Shift MS are offering a buddy system. For more information, please go to their website: https://shift.ms/
Finally for now, thank you so much for your continuing support! It has never been more vital. Whether you give monthly or one-off donations we appreciate it so much, especially as we need to ensure the Centre is ready to reopen as soon as the lockdown has ended. On a personal note we’d like to say a huge thank you to our wonderful volunteers who have supported the Centre through the weeks leading up to closure, to the benefits team who continue to volunteer, and to everyone who has contributed ideas and services to this letter. We are extremely grateful.
The Centre is safe and sound and we can’t wait to welcome you and yours back as soon as it is possible. Look after yourselves and each other – and stay safe!
With very best wishes
From the Board of Trustees, EJ, Ali and Jane
BENEFITS NEWS
FACE-TO-FACE ASSESSMENTS SUSPENDED
The DWP have announced the suspension of all PIP, ESA and UC face-to-face assessments for three months, from Tuesday 17 March.
Anyone who had a face-to-face assessment appointment scheduled from Tuesday 17 March onwards does not need to attend.
You should be contacted by IAS (Atos), Capita or Maximus to discuss next steps and alternative arrangements.
This may mean your claim will be assessed just on whatever paperwork is available.
In some cases the assessment provider might also carry out a telephone assessment.
This may take the form of supplementary questions where there is not enough information in the paperwork.
And
PIP AWARDS EXTENDED, BENEFITS REVIEWS AND REASSESSMENTS SUSPENDED
In a welcome move, the DWP have announced that there will be no new reviews or reassessments of benefits for three months from Tuesday 24 March.
Benefits affected include:
· Personal Independence Payment (PIP)
· Universal Credit (UC)
· Employment and Support Allowance (ESA)
· Disability Living Allowance (DLA)
· Attendance Allowance (AA)
Where an assessment has already taken place for PIP, the decision making process will continue.
Where you already have an assessment scheduled, the assessment provider should contact you to explain whether a paper or telephone assessment will take place.
If your PIP award is due to end, it will be extended.
Take on an Ultra Challenge for 2020!
Are you a keen walker, jogger, or runner who may be new to challenge events, or perhaps with more experience and seeking an adventure!
Contact Ali on events@mssussex.com or call on 01273 594484 if you would like to take part in one of these challenges.
Brighton Half Marathon 23rd February 2020
We have a team of runners running for us in the Grand Brighton Half Marathon. Registration for the event is now closed but if you would like to come on the day and cheer on our runners please do!
Ali our Support Officer will be running on the day, along with her husband Sean. Also, running on the day will be Adam Walter (son of one of our lovely trustees) and Sarah Brett-Sheridan, one of our Centre Members who also has MS, a true inspiration to us all!!
If you are feeling generous, please give a donation. The links to our runners Virgin Money Giving pages are below:
Ali – https://uk.virginmoneygiving.com/AliDunn2
Adam – https://uk.virginmoneygiving.com/AdamWalter2
Sarah -https://uk.virginmoneygiving.com/SarahBrettSheridan
We wish all our runners the best of luck and hope they enjoy the race!
Fancy organising your own event?!
Why not create your own event to raise money for us? They can be a simple as a bake sale at work or larger event like a quiz night at your local pub.
If you are running your own event, don’t forget to let us know so that we can support you. Contact Ali on events@mssussex.com or call on 01273 594484