MS, carers and care at home during lockdown
We last updated this page on Monday 22 June.
Government and general guidance for unpaid carers
The UK government has guidance for anyone providing unpaid care. This includes advice on protecting people you live with, how to access emergency care, and looking after your own health.
There’s also UK government guidance on personal protective equipment (PPE) for unpaid carers. It’s included in advice for people who get social care services through direct payments - but the PPE information covers family and friends as well.
You can also find support where you live on the Carers UK website
Practical support if the person with MS has been told to ‘shield’
If the person with MS you care for lives in England and has been told to ‘shield’ by the government or their doctor, you should register for the extra support you need on the government website. This includes help with food, shopping deliveries and any extra care you need.
In England, if the person with MS became ‘extremely vulnerable' recently and hasn’t yet registered on the government website for support, they need to do so before 17 July in order to access a priority supermarket delivery. But some councils are also able to help you access priority food deliveries, so it is worth contacting them even after 17 July.
As a carer you should be able to use the supermarket's priority shopping hours for vulnerable people. This should also be the case if after shielding is paused, because everyone with MS is technically considered ‘clinically vulnerable’.
Practical support whether or not the person with MS is registered as ‘extremely vulnerable’
Across the UK the COVID-19 Mutual Aid website has a list of local groups that might be able to offer practical help with shopping or friendship.
In England, anyone with MS (or a carer on their behalf) can call the Royal Voluntary Service to get help from NHS volunteers with shopping and collecting prescriptions: 0808 196 3646
If you live in Scotland, you can use the Viral Kindness website to find help in your local community including with food shopping and deliveries. Or the Scottish government helpline for people at risk who find it hard to get online: 0800 111 4000
In Northern Ireland, contact the COVID-19 Community Helpline for information and guidance from Advice NI.
Am I entitled to any financial support?
Carer's AllowanceCarer's Allowance is the main benefit for carers. And if you look after someone for 35 hours a week or more, you might be eligible.
From 30 March, eligibility for Carer’s Allowance has been relaxed in two ways across the UK:
- Unpaid carers can continue getting Carer’s Allowance if they take up to 4 weeks off from caring within a 6 month period because they, or the person they care for, gets coronavirus. Or if they have to self-isolate because of it.
- Giving someone emotional support on the phone or online now counts towards the 35 hours of care needed to qualify for Carer’s Allowance
It’s also worth checking you and the person with MS are getting what you’re entitled to.
Statutory pay and furloughThe UK government has also announced greater access to statutory sick pay and employment support to help people affected financially by coronavirus. This includes:
- people who can’t work because they’ve been advised to self-isolate
- people who can’t work because they care for someone at home and the household has been told to self-isolate
- a job retention scheme (furlough) to help people keep their jobs
If you care for someone you live with, you might be able to claim statutory sick pay (SSP) for the total time you have to self-isolate.
SSP is arranged through your employer. Talk to them first about occupational sick pay, as that is more generous, but if you’re not eligible for that, you can apply for SSP.
Can I get tested for COVID-19?
Anyone with coronavirus symptoms should ask for a test. Some home testing kits are available for people who can't get to a drive-through centre.
Will social care services change?
New legislation for England, Scotland and Wales might affect some social care services. Councils will be able to make temporary changes to the care and support that’s available. This is known as an emergency period. These changes don't apply in Northern Ireland.
They must try and provide the same services, but if absolutely necessary, they can change what they offer in order to prioritise people with the highest needs.
At the moment, we don’t know what effect, if any, it will have in different areas of England, Scotland and Wales. We will be monitoring the situation very closely and raising any concerns urgently with governments.
If your council does declare an emergency period, they should let you know. In England, you can also check for yourself on the Care Quality Commission’s website.
Until an emergency period, your legal rights to care and support don’t change.
Your council must contact you if they’re planning any changes that affect the care or support you get at the moment, so they can involve you in decisions.
If you don’t feel you're getting the care and support you need, contact your council (this might be your social worker) and care provider. If you don’t get the response you hoped for, contact our MS Helpline. If you live in England or Wales you can also speak to the MS Legal Officer at the Disability Law Service.
Your right to complain to your local authority about the care and support you receive stays the same.
- Read the Citizens Advice UK’s information about how to make a complaint about your care and support
- Read the UK government guidance on getting help while isolating
- In Scotland you can register for help on the SMS shielding service
Remember you're not alone
We're here for you. If you’re worried about your MS and coronavirus and want to chat to someone, call our MS Helpline on 0808 800 8000. We’re here Monday to Friday, 9am to 7pm except bank holidays.
You can also sign up to our new Keep in Touch service, for a weekly catch up call with one of our friendly volunteers.
If you'd like to talk your worries through online with other people who know MS, visit our Online Community Forum today.
You can join one of our Time to Chat or Virtual Wellbeing sessions and connect online with other people living with MS across the UK. Or you could sign up for an information webinar. We've got plenty to choose from, take a look at our online sessions and see what suits you.
We added this page on Monday 22 June 2020
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