September 2022 - Wheelie MS Advocate

Press play to listen to MS Society – Living Well With MS or scroll to continue reading.

There are two sides to every story, it seems, let me share mine.

In December 2020, I agreed to take part in the Experts by Experience team, which co-produced the MS Society Befriending Team.

While continuing to contribute to the Experts by Experience team, I was invited to join the Living Well with MS team, initially to co-produce the service, which led to me becoming a facilitator and taking part in the sessions.

As a follow up, Andrea interviewed me from the MS Society press team, which lead to a press release.

Press Release

For immediate release

“It can be invaluable what you get from other people” – East Yorkshire woman with MS talks about how MS Society support sessions have helped her

A 55-year-old woman from Beverley is speaking out about how the MS Society’s ‘Living Well with MS’ sessions have helped her manage her condition – in the hope others will sign up too.

Rachael Tomlinson was diagnosed with the primary progressive form of multiple sclerosis in 2017. She’d been suffering from symptoms for years before finding out she had the condition.

Rachael now faces lots of MS symptoms, including weakness down one side, dizziness, problems with her balance, spasticity, and bladder and bowel issues. She says all of them are made worse by fatigue. She uses a walker and an electric wheelchair to get around. She’s medically retired but volunteers for a number of organisations including the MS Society, RSPCA and the union, Unite.

Rachael was involved in setting up the ‘Living Well with MS’ sessions as a volunteer and has taken part in lots of them too. She says they’ve been hugely beneficial: “It can be invaluable for what you get from other people. Sharing your own experience can be really invaluable too. It keeps you in the loop. There’s lots of useful information in the webinars that you wouldn’t necessarily get elsewhere–the MS Nurses and neuro physios know exactly what they’re talking about.”

Rachael also sat on the panel for one session: “I’ve recently taken part in the newly diagnosed session. It was really, really beneficial, and I didn’t go into it for that. It was over two weeks and we explained our experiences. It brought me back into the spotlight of talking about MS. I tend to brush over it now until it affects what I’m doing. I normally throw myself into support mode to try and help others. But it felt invaluable to share.”

There’s a huge amount of support available through the programme, including information webinars covering different topics each month. They focus on things like research developments, pregnancy and MS and how to talk to children about MS. There are also wellbeing sessions which connect people with MS with others across the UK.

Over 130,000 people live with MS in the UK. MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think.

Tracey Harrison from the MS Society runs the ‘Living Well with MS’ programme: “MS is relentless, painful and disabling. It’s an unpredictable condition and is different for everyone. That’s why we offer such a huge range of support through our ‘Living Well with MS’ sessions, so there’s something for everyone from those who may have only been diagnosed recently to people who have had MS for many years.

“The sessions are a way of bringing people with MS together to discuss issues that may be affecting them from changing symptoms to talking about family life. We always aim to make them really friendly and open.”

You can find out more about the MS Society’s ‘Living Well with MS’ programme and the courses and webinars on offer at:

https://www.mssociety.org.uk/care-and-support/virtual-support-events

ENDS

Notes to editors

For press enquiries please contact:

Andrea Lisher, Head of PR (Monday – Wednesday), andrea.lisher@mssociety.org.uk or Jenna Mahoney, Head of PR (Wednesday – Friday), jenna.mahoney@mssociety.org.uk

About multiple sclerosis

Over 130,000 people live with multiple sclerosis (MS) in the UK
MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think
It’s relentless, painful and disabling
Research has got us to a critical point. We can see a future where nobody needs to worry about MS getting worse
Our Stop MS Appeal needs to raise £100 million to find treatments for everyone with MS

About the MS Society

The MS Society is here to make life better for people with MS, through research, campaigning and support
For information about MS or to donate visit www.mssociety.org.uk

Response from Hull Live

The same day the press release went out, Hull Live contacted, who you will see I have spoken to before here and here.

The next day a reporter rang me and asked me some further questions, which I responded to, prior to hanging up I asked if I could have a sight of copy prior to print, she sounded uncomfortable about this and advised she just wrote the copy it was up to her editor whether the copy was printed.

The very next day, this appeared both in Hull Live and on their Facebook page.

In closing

The purpose of the press release above was the promote support to people living with MS. It was not about me and, sadly as the mainstream media do, they sensationalised it, which is so disappointing. Also, by using the words “Rare Disease” all it did was promote MS as something it is not.

I am aware the MS Society has asked for a correction, however I don’t hold out much hope of this happening.

Anyone who knows me and hopefully people who read this blog and/or listen to the podcast know all I ever want is for people living with MS, their families and friends to know there is support available and for this I am truly grateful. Which is what makes the Hull Live article so disappointing.