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Campaigning updates

Submitted by Jo Webber on Wed, 2020-05-13 12:24

We know you are always interested to hear about the work we do to influence policy and campaign on behalf of our community. And in these times of rapid change and uncertainty, it’s even more important for us to represent the needs and rights of people affected by MS.

Here are some highlights of our recent work:

Italian research into COVID-19 and MS

Submitted by Jo Webber on Wed, 2020-05-13 12:19

Research results from Italy suggest that having MS doesn’t increase the chances of a more severe COVID-19 infection.

Researchers set up an online platform to collect information about people with MS who had been diagnosed with COVID-19, or had developed symptoms. MS neurologists were asked to input data and share patient outcomes.

The results report that 223 out of 232 people with MS showed only mild symptoms. Of the 232 people, 211 were taking a disease-modifying drug.

A helping hand for those self-isolating

Submitted by Jo Webber on Wed, 2020-05-13 12:16

NHS Volunteer Responders have asked us to remind you that their volunteers are ready and willing to help anyone with a medical condition making them vulnerable to COVID-19, or a disability – especially if they are over 70.

If you know somebody with MS who is self-isolating and needs help with shopping or collecting prescriptions, or would just appreciate a call for a chat, point them in the direction of NHS Volunteer Responders.

They can call 0808 196 3646 or visit nhsvolunteerresponders.org.uk to request assistance.

Celebrate Volunteers' Week (1-7 June)

Submitted by Jo Webber on Wed, 2020-05-13 12:03

Volunteers’ Week is a national celebration of volunteers, and the perfect time to thank you for everything you do.

In ‘normal’ times, it's a chance for the whole UK to celebrate the contribution of all those who generously give their time to volunteer for so many good causes.

And, of course, a new army of volunteers has recently been signed up to local and national initiatives right across the country to help and support the lonely and vulnerable during the current crisis.

New resources

Submitted by Jo Webber on Mon, 2020-04-27 12:44

We have created new guides for using Zoom

  1. Participating in a Zoom meeting.
  2. Hosting a meeting on Zoom.

We have also created a basic factsheet about coronavirus and MS which can be printed and sent to anybody without online access.

  1. Offline factsheet on COVID-19 and MS

Staying connected using Zoom and social media

Submitted by Jo Webber on Mon, 2020-04-20 14:55

In these unsettling times of social distancing and self-isolation it's easy to feel less connected with the individuals and communities who are important in our lives. We completely understand if groups don’t feel able to carry on at this time. However, those that would like to continue to provide support will be doing their best to keep in touch with their volunteers, members and service users online or by telephone

o Zoom video conferencing

Shopping support

Submitted by Anonymous (not verified) on Thu, 2020-04-09 15:51

We understand it’s a confusing time for everyone with so much information available. Particularly in relation to shopping hours and online delivery slots for those affected by MS. 

I have MS, can I use the priority slots? 

Some major supermarkets have introduced priority shopping hours in stores for vulnerable people.  

We know supermarkets are experiencing extremely high demand and not everyone with MS has been able to get a delivery. If you’ve had a letter from the NHS you’ll have some guidance on there, including how to register as vulnerable. 

Social care changes

Submitted by Anonymous (not verified) on Thu, 2020-04-09 15:44

There has been a lot of talk recently in the media around the changes to the Care Act. This is likely to be very worrying for many in the MS community. 

What does this mean? 

On March 31 local councils could declare an ‘emergency period’. This means that they can suspend the Care Act duties to meet eligible needs for social care under the Coronavirus Act. 

Our financial position

Submitted by Anonymous (not verified) on Thu, 2020-04-09 15:39

As you will most likely have heard, the current situation is financially difficult for the charity sector. As an organisation our income is significantly impacted, and we expect it will be similar for volunteer groups. So it’s prudent that we all manage expenditure.

We entered this difficult phase as a financially secure, well managed organisation and remain so. However, we are anticipating a 30% reduction in our income which is typical for charities of our size. And we cannot sustain a drop in income of that level without taking significant steps to reduce expenditure.

Offering MS Support during social distancing

Submitted by Jo Webber on Wed, 2020-04-08 15:05

We appreciate that your group may be struggling to know how to support your members and the MS community locally while face-to-face services have had to be put on hold.

MS Support

If your group offers MS Support, we are keen to work with you to ensure that you can continue this to support local people affected by MS. Especially if you are experiencing a higher than normal number of enquiries during this difficult period.