Members of MS Society's Croydon Group chatting on a sofa

My MS My Needs – more must be done

Tuesday 30 May 2023

In 2022 we held the fourth instalment of our My MS My Needs survey. Over 6,500 people took part, and this was the first time we held the survey since the pandemic began.

I want to share my deep appreciation to everyone who took the time to complete the survey. We know it wasn’t a short survey and the questions were very personal. Thank you for trusting us with your experiences.

Surveys like My MS My Needs help us make sure the voices and experiences of people living with MS are at the centre of everything we do.

Needs are not being met

From the outcome of the survey, one thing was painstakingly clear – too many people living with MS aren’t getting the support and services they need. We found that, of those who completed the survey:

8 out of 10 people who need cognitive support are unable to access it
Despite bladder issues being common in MS, 4 out of 10 people who need continence support are unable to access it
Over half (57%) of respondents say they're not receiving enough regular support and guidance on how to self-manage their MS
Too many people are struggling financially and those who are struggling have greater unmet need than those living comfortably – with those living comfortably almost twice as likely to have access to an MS nurse.

While everyone’s MS is different, their ability to access the support they need to live well must not be.

Read the full My MS My Needs 2022 report (PDF, 763 KB)

How does this compare to surveys from other years?

It isn’t possible to draw a perfect comparison to the other surveys, as we don’t know if it’s the same people from the same places completing each survey. However, we do know that when looking at the 2019 survey, more people are reporting not getting the support they need in 2022:

64% of people say they don’t receive enough support to stay physically active, compared to 37% in 2019
38% of people say they don’t receive the physiotherapy they need, compared to 30% in 2019
60% of people say they don’t receive enough emotional support, compared to 44% in 2019.

So, what are we doing?

We want everyone to live well with MS and we work tirelessly to make this a reality. We do this by directly supporting people living with MS and their carers, families and friends, through services like our MS Helpline and our brilliant local groups. In 2022, our MS Helpline’s benefits advice service helped people with MS earn an estimated financial gain worth £723,209.

We campaign together for positive changes to services and support that people with MS need. Our Approved but Denied campaign has seen the number of health bodies in England who state they routinely fund Sativex, a drug to help with spasticity, increase by 45%.

And we work with health and care professionals to improve access to responsive treatments, care and support. We’ve created training for social care staff to help them to better understand MS. And we've supported NHS services to adopt better pathways of care in areas like bladder and bowel.

But we recognise more must be done. We’ll continue to work to make sure our services meet the needs of the MS community and reach even more people with MS. And we’ll continue to speak out and call for action so the services and support work for people with MS.

We know we're missing voices

As an organisation we’re committed to being here for everyone with MS. And that includes making sure we hear, understand and take action on the experiences of people with MS - whatever their age, ethnicity, gender, sexual orientation, beliefs, family or how much money they have.

Unfortunately, despite taking steps to increase the diversity of respondents to My MS My Needs 2022, we didn’t achieve the representation we wanted. I recognise the need for us to do more and we’re committed to making progress to better understand the breadth of the MS community.

Speak to someone who knows MS

I’d like to once again thank those who took the time to complete the My MS My Needs survey.

If you, like many respondents to our survey, are struggling to get the support you need or need to talk to someone, we’re here for you. Our free MS Helpline gives emotional support and information to everyone living with MS. We’re here Monday to Friday, 9am to 7pm except bank holidays on 0808 800 8000.