People with MS thoughts on freedom day

With changes to the Coronavirus restrictions coming into force in England today, we wanted to see what people with MS thought about it. The MS Trust recently published a blog by Carla discussing if the so-called ‘Freedom day’ is really that for people with MS. As someone who is classified as clinically extremely vulnerable, Carla shielded for 16 months and has noticed a worrying trend of people moving from the ‘We are in this together’ mentality to a more ‘Don’t be muzzled by a mask’ point of view.

And it seems a lot of people are worried about the potential lack of masks. We spoke to some members of our MS Trust Facebook group to find out how they felt.

I’m very disturbed by the news and will continue to wear a mask and only go out if it’s essential at least until we know more. I think this is herd immunity by another name. An effective way to cull vulnerable and elderly people, said Jane.

As we now know, Covid-19 spreads through droplets that are expelled when an infected person coughs or sneezes. These droplets can be inhaled by other people or land on surfaces that they touch and then ingest by touching their eyes, nose or mouth. 

The way Covid-19 spreads led to most of us having to wear masks when out in public. As of today, restrictions in England have been lifted, including the requirement to wear masks. However, we have seen that a lot of people are still keen to keep on wearing them. Several regional mayors have called upon the government to keep face coverings as mandatory on public transport while in Scotland and Wales, these remain compulsory in most public indoor settings until at least the next phase of easing Coronavirus restrictions. For Scotland, this date is 19 July while for Wales it is 7 August. 

I feel very anxious about all the changes coming at once. I have been shielding and feel that we have been very forgotten in all of this. There will be a ‘subculture’ of those who just can’t take the risks.
The dropping of the face mask regulations particularly bother me. I have no idea if the vaccines have worked for me. The thought of there being no distancing, no masks is very scary. I will not be changing my ways. So my world will remain tiny and very limited. - Judi

If you want to keep your mask on, please do so as you won’t be alone in the decision.

If I go out will I catch Covid-19?

When it comes to the rates going up and people worry about contracting Covid, it is important to know that if you have MS, you have the same risk of developing Covid-19 as anyone else. People with MS are at no greater risk than the general public of becoming infected with Coronavirus as it is not a condition which weakens your immune system. An exception to this is if you're taking certain disease modifying drugs. More information on these can be found here: 

As the restrictions lift a lot will come down to personal choice. Sadly, this may mean that if the R rate increases dramatically, clinically vulnerable people will feel even more isolated, potentially having to stay at home once again in order to protect themselves. 

Not all people with MS feel this way. Some feel more positive about the changes ahead.

I’ve always thought it is what it is. I’m happy to get back to some sort of normal and think if people are being sensible and practice personal hygiene then things should be ok, commented Rima. 

I've been working in hospitality during the times it has been able to open. I think it's about using your own judgement. If you don't feel safe somewhere, don't go. I haven't contracted Covid once (I've tested myself regularly) but I'm not a hugger. I don't touch things I don't need to, wash my hands regularly and avoid touching my face. I naturally keep my distance as best as possible anyway. We need a bit of life back, I think. -Alexandra

What about making the right choices?

Things like deciding to stay at home and do an online food order rather than going into the shop is an easier decision to make, compared with if you are now being told that you have to go back into an office after working from home during the pandemic.  What are your options in a situation like this?
Even if you have been working as a keyworker during the pandemic you might worry about the changes ahead.

I'm extremely concerned as I work 15 hours a week in a supermarket. I won't be taking my mask off on 19 July as like a lot of us, I'm fully vaccinated but don’t feel fully covered due to DMDs. I don't know how I will react if people start shopping with no masks, says Elizabeth. 

With the lack of restrictions, a lot will be down to trying to think sensibly about what is best for you. Make sure you feel as comfortable as you can in various situations. If you would like to continue working from home, check out what rights you have and speak to your employer. Explain to people how you feel about the situation and ask them to respect your choices. If you are not ready to meet with others indoors yet, tell them this and don’t risk putting yourself in a situation you will struggle with.

What can I do if I am concerned about restrictions lifting?

Getting the vaccine

Get vaccinated if you can. If you are worried about side effects for people with MS, you might find our recent Q&A with Professor Alasdair Coles, a neurologist at Addenbrookes hospital, helpful.

In England you can use the NHS website to book an appointment at a vaccination centre or hub. Online bookings can also be made in Northern Ireland on the Health and Social Care booking website. In Scotland appointments are being allocated and there are no plans to introduce an online booking service. You should contact NHS Scotland if you haven't received an appointment yet. If you are in Wales you should also be invited for a vaccination and need to follow the instructions from your local health board if you haven't been contacted yet.

What about returning to work?

If you are worried about being told stop working from home and getting back into a place of work, the guidelines can be confusing.

The government website says the following about the changes on 19 July:
"From 19 July, social distancing measures will be ended in the workplace and it will no longer be necessary for the government to instruct people to work from home.
However, employers still have a legal responsibility to protect their employees and others from risks to their health and safety. Your employer should be able to explain to you the measures they have in place to keep you safe at work." 
As people with MS are considered vulnerable, it would be reasonable to request to still be allowed to work from home if possible. 

The Health and Safety Executive has published guidance on protecting vulnerable workers, including advice for employers and employees on how to talk about reducing risks in the workplace.
If you need support to work at home or in the workplace you can apply for Access to Work. 

Further help for work related issues

ACAS (Advisory, Conciliation and Arbitration Service) has further information on self-isolation and sick pay as well as social distancing, flexible working and working from home. They also have information on what options are available for those who are concerned about returning to the workplace due to Coronavirus. 

Citizens’ Advice has comprehensive information on employment, sick pay and benefits for those affected by Coronavirus or needing to self-isolate. They also have advice on what to do if you're worried about work.

The government also has guidance on getting financial support during the Covid-19 outbreak

If you are concerned about health and safety in your workplace, you should speak to your employer in the first instance to try and resolve the issue. If your concern isn't resolved then you can contact your employee representative, your trade union if you have one, or report your concern to the Health and Safety Executive. 

What about my mental health?

It's understandable if the thought of things opening up or having to isolate make you anxious. It's important to make sure you look after your mind in all of this.

Our MS Trust Facebook group has over 13,000 members, and is a great space for people with MS to share experiences, ask questions and chat with others who may understand what you're going through..

Mind has some great suggestions of ways to help us all cope. These include ways to connect with other people, through phone calls or social media; planing how you are going to spend your time; finding ways to relax and be creative; ways to keep your mind stimulated.

NHS advice on mental wellbeing:    
10 tips to help if you are worried about Coronavirus
    
Mental wellbeing while staying at home

Whats happening in the rest of UK?

Scotland will move to Level Zero from July 19 – but this still includes some limits on social contact. In Wales most restrictions will be lifted on august 7 but it has been confirmed that face coverings will remain mandatory on public transport. Northern Ireland will be relaxing some of its Covid restrictions on Monday July 26.

In conclusion...

The latest guidelines or lack thereof may make this a very confusing time for people with multiple sclerosis. Some will embrace freedom day and treat it like the pandemic is over despite infection rate numbers telling us otherwise. We sometimes hear scientists comment on the need to focus on “Data not dates”. It might be a good idea to keep an eye on the Covid-19 rates in your area and to act accordingly. Continuing to wash your hands, keep a safe distance and wear a mask is probably a good choice too, even if you no longer legally have to do so.

If 19 July is not a freedom day for you, then that is ok. You need to do what is good for you. Do get in touch with the MS Trust if you have any questions regarding MS and Covid-19, or the lifting of restrictions, and we will do our best to help find the answers. You can call our free Enquiry Service on 0800 032 38 39 or email us at ask@mstrust.org.uk