This week is Volunteer’s Week, where we celebrate the incredible contributions that volunteers make to communities across the UK. 

First started in 1984 by the organisation then known as Volunteering England, this week marks the 40th anniversary. Read more about Volunteers Week here.   

MS Volunteers 

We know volunteers make a huge difference to the lives of people with MS. The MS Society, primary funders of the UK MS Register, rely heavily on volunteers who work in a number of areas including: 

• providing support and care within the MS community 
• delivering resources to people affected by MS 
• fundraising  
• advocating for MS research and policy 

Many of the MS Society’s volunteers live with MS themselves and there are lots of different roles available. Read more about volunteering for the MS Society here.  

PPIE Group

The UK MS Register also relies on people with MS volunteering their time. As participants on the Register people living with MS regularly complete questionnaires sharing their data and experiences with MS. 

In addition the Register works with a fantastic team of people who form the Patient and Participant Involvement and Engagement (PPIE) group. The group meet once a month for an hour to support the Register and have a say on the behalf of people with MS.  

The PPIE group sometimes offer support to researchers who want to consult with people with MS, they assist with wording of questionnaires or by providing feedback on length or format. In addition the group work with the UKMSR team to help make sure the website is usable, and offering suggestions of ways to engage people with MS. Group member Patreesha said: 

 “I have been a member of the group since its inception, around 4 or 5 years ago. I joined after noticing on the UKMS Register’s website that an opportunity was coming up to join a new PPIE group.  

The group help to guide the Register from a patient perspective and that can mean advising on lots of different research projects which require the Register’s input.  

When I joined I was so keen to do something meaningful with my time, having been retired from my job due to my MS.  Members of the group bring varying skills to the table, some have scientific backgrounds, some academic, and some business. I enjoy seeing how we all fit together with MS as the common denominator, forming an effective advisory group. I’m very happy to donate my time to them as I know that I’m participating in something really worthwhile.” 

This Volunteers Week the Register team want to say a big thank you – to each and every one of our participants and the PPIE group for your support.  

If you would be interested in joining the PPIE group, please get in touch: contact@ukmsregister.org