South East residents called to help improve vital MS services

Health and Social Care, Homepage

Residents of the South East living with multiple sclerosis (MS) are being called to take part in the UK’s largest MS survey, which will help improve vital MS services and support.

The MS Society’s My MS My Needs survey – which is run in partnership with the UK MS Register – takes place every three years. Past results have led to significant findings about MS treatment and care across the UK. This year will be the first time the survey has run since the start of COVID-19, and will provide invaluable insight into how the pandemic has impacted those with the condition.

Alongside My MS My Needs, the charity also run an accompanying survey for those who support a family member, partner or friend with MS.

Over 130,000 people in the UK live with MS, including an estimated 17,000 in the South East. The condition damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think.

The 2019 My MS My Needs1 survey of 8,000 people with MS revealed:

  • Two in five people (40%) who could benefit from taking a disease modifying therapy (DMT) weren’t taking one. DMTs can reduce how many relapses someone has and how serious they are.
  • Nearly half (44%) of people were not getting the emotional support they needed.
  • People with an annual household income of less than £25,000 – which is less than the median UK average – were less likely to have seen a neurologist, be on treatment, or get physiotherapy compared to those with higher incomes.

This year the MS Society hopes to get more vital insights from across the UK.

Crystal Tait, 45, from Fareham in Hampshire, was diagnosed with primary progressive MS in 2014. She lives with significant mobility issues, and isn’t able to leave her house without a mobility scooter. Crystal is a member of the MS Society’s research network – a group of people living with MS who tested and provided feedback on the survey:

Crystal says: “I have an annual appointment with my neurologist, but it always gets delayed. My last appointment was supposed to be in January, but it keep getting postponed, and I only just had it in May! I haven’t been able to see my GP in two years, and I desperately need an occupational therapy assessment. I’m finally on the waiting list now, but it’s been over 16 weeks, twice the expected waiting period. At the moment, my house is completely unsuitable. There are steps everywhere, and getting into the bath is really dangerous. I need some insight into what adjustments to make.

“The My MS My Needs survey is really important, because not everyone’s experiences are the same, and we can all learn from each other. I would encourage everyone to take part because when we speak collectively, we have a louder voice.”

Phillip Anderson, Head of Policy and Evidence at the MS Society, says: “MS is unpredictable and different for everyone. That’s why we need to hear from as many people as possible across the UK, including in the South East, to build an accurate picture of what life is like with MS in 2022.

“Living with MS can be relentless, painful and disabling, and access to the right services and support, at the right time, is essential. We need to understand where services are working well, and where improvements are needed. Information from My MS My Needs will help us campaign for change and shape services and support for people affected by MS.”

My MS My Needs takes around 30 minutes and is confidential. To take part visit https://ukmsregister.org/mymsmyneeds.

The MS Society’s survey for those who support a family member, partner or friend with MS can be completed at www.mssociety.org.uk/FriendsFamily

Both surveys close on 1 August.