Supporting people with MS since 1970
Ann has been volunteering with The Scunthorpe and District Group for over 50 years. She tells us how her changing roles over the years have enabled the group to keep going.
My late husband Max was diagnosed with MS a month after we got married in July 1966 and he was age 23. It came as a shock and we feared how things might be for us, but after talking to our GPs, it was easier to understand. We hoped we could remain positive for the future. We didn’t know much about MS at the time.
A colleague at Max’s work also had MS and he and his wife asked us to join them at a monthly meeting. The idea was to form a proper MS group to improve support available to people with MS in the area. At the time, the only other support available was from medical professionals.
Meeting one of the MS Society founders
The Scunthorpe and District Group was formed in January 1970 by Rowland Padley who had MS. The Lincoln Group helped us set it up and, Sir Richard Cave, one of the founders of the MS Society, came to one of our early meetings.
Richard gave a talk about MS and the vision for the future. He hoped forming local groups would support people and help give them a more positive outlook on MS. His wife, Mary had MS and this was one of the reasons they set up the Society. As they had first-hand experience of the condition, they wanted to make a better future for people living with MS.
My various roles help us continue being there for people with MS
I’ve done many different volunteering roles for the group. I’ve produced the newsletter, have been secretary and acted as Group Chair (now known as a Group Coordinator). I’ve fundraised over the years, selling cards and gifts from the Webb Ivory catalogue.
When Max became unable to do his Treasurer role, I took it on to help him. When he passed away in November 2010, I continued the role. 13 years later, I’m still doing it!
In addition to this, we run a support group on a Monday morning and I make sure all runs okay. From making sure we have refreshments in stock, to sorting out therapy and speakers, etc. I’m usually there first and last to leave.
More people have to work full-time now to pay the mortgage etc. so volunteers are more difficult to find. Some volunteers, like me, take on additional roles so groups can continue running.
In 1970, there wasn’t the support there is now
In 1970, our group was more of a social set up. There wasn’t the support there is now. The number of group members have been up and down over the years. It’s apparent when we host our Awareness Days that a lot of people still don’t know about MS. Often when some people are diagnosed, they cannot face up to the fact. Sometimes they’re not signposted to their local group, which could possibly help them to try and cope.
I think the members we have are happy with what’s available to them, but there’s always room for improvement. Sadly we struggle to get volunteers to take on active roles. A lot of members just want to come along and enjoy what is available.
I encourage people to live their lives as normally as possible
Because of my personal experience of living with someone with MS, I’ve always tried to encourage people to be positive and to live as normal a life as possible, doing things they want to do. As a group we try to provide an environment that is helpful, encouraging and enjoyable.
The feedback we get is that our group has made a difference in our area. We provide support and friendship, and try and get people to join in the activities we provide to help them physically and mentally.
Challenges and rewards
Due to cutbacks in funding we seem to take one step forward and two steps back. I’ve seen many changes over the years but some are not always for the better. MS has always been down the pecking order for help. Life with modern technology is not for everyone. We’re not all online or have smart phones, so some people can feel lonely and isolated. Hopefully with the ‘Stop MS Appeal’ people’s quality of life will improve as new drugs become more widely available. Hopefully one day we can find a cure to stop MS all together.
I’m almost 81 years old and still enjoy volunteering as much as ever! I find trying to make things better for people with MS so rewarding. It’s such a worthwhile thing to do, knowing you are trying to make a difference for people and their families living with this very unpredictable condition.
