What support schemes and resources can I call on for support with and advice on working with MS?

In this video Rebecca interviews Rony Erez who is a Senior Policy Officer MS Society. The interview was filmed by Fred

Video transcript

Rebecca from the MS community: What sort of support schemes and resources are out there to really help somebody who’s working with MS, you know, where can they go to get some support and advice?


Rony Erez, Senior Policy Officer, MS Society: So, we mentioned the Access to Work and it’s worth kind of going into that in a little bit more detail because someone referred to it once as a government, government’s best known – sorry – best kept secret.  Best kept secret, sorry. The government’s best kept secret. And it really is and it’s a shame because the scheme is there to provide people with MS and disabled people more generally with the support, financial support mostly, that they need in order to stay in their job.  So, for example, a person with MS might not just need equipment in the workplace or rest breaks, but they might need support in getting there. If someone has a problem, for example, with using public transport, and we know that a lot of people with MS might do, then this scheme can provide financing for taxis, for example.  So, you know, a taxi to take someone to and back from work every day. There are very few other government schemes out there, unfortunately. One of them has just been closed, the Fit for Work scheme, so there is even less available now. But in terms of resources for support, there are other resources that are available. As I mentioned before, the MS Society provides a lot of resources in writing, on the website and through a helpline that can help people with MS to know their rights, to know what is available out there and so on.  Another really good resource for support is actually your MS nurse. MS nurses have told us when we surveyed them a number of times in the last few years that they always try to help people with MS talk about employment and see if they can help support and even resolve any issues. Some of them even speak to employers when a person with MS approaches them with their concerns, to kind of help support people and inform employers about what MS is and what the person requires to stay in their work. And also, there are, for example, peer support resources.  So again, the MS Society, and I’m sure other groups and other organisations as well, provide or have support groups and social groups and so on for people with MS to meet pretty much anywhere in the country. And it can really help for a person with MS to have that peer support where people with the same experiences or the same problems can actually talk about them and might offer some sort of advice that might not come from, you know, the usual channels of your healthcare professional or from government schemes.


Rebecca: Okay.  You mentioned there a couple of the MS Society resources, and I have to say, it’s something I use a lot with employers when I’m working with them.  What sort of information is on there? So if I’m an employer looking for, and I’ve got somebody who comes to me and discloses and I want to understand a little bit more, what might I be able to tap into by looking at the MS Society?


Rony Erez: So the MS Society has a number of resources for employers to tell them what MS is, what their legal obligations are, what they might expect to happen, and so on.  It’s quite… there is a lot of information there and it relates not just to legal, but also to kind of like personal matters and tells employers about MS. But employers also have other support schemes themselves that they can use, so it’s not just people with MS who need kind of help, employers also need that as well.  For example, the government’s Disability Confident scheme is there to specifically help employers and support employers to, first of all, like I said, know their legal obligation, which is extremely important, but also to give them information on specific conditions and how that might affect a person with a disability and how they can support them.  However, saying that, Disability Confident has been around for a number of years, but very few employers have actually signed on to it. So we want to see the scheme expanded, we want to see a lot more employers and a lot more smaller employers sign up to it. Because a lot of the employers that are signed up to it already do really good work with disability, so they don’t necessarily need that, they should be leaders in their field.  So we want the scheme to be expanded, but we also want the scheme to kind of really work and be beneficial for employers and for people with MS. And at the moment it doesn’t really do that, because there isn’t enough scrutiny to see whether employers who sign up to it actually really kind of like do their best and follow best practice. So we want the scheme to be expanded and we also think that employers shouldn’t necessarily have to sign up to something and become a member of something, they should have a one-stop shop where they go to, to get all the information that they need fairly easily at their fingertips.  So we think that there should be an organisation like that that provides all the information, that can provide information on disability in general, but also on specific conditions because we know that people with MS have very specific barriers and problems that they face.

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