How to self-isolate and get help: a practical guide if you’re disabled

As the UK lockdown continues, many disabled people are self-isolating for 12 weeks. There has been a lot of confusion surrounding some lockdown measures – ‘shielding’ vs ‘self-isolation’ and what the difference between the ‘high risk’ and ‘extremely vulnerable’ groups is.

To help you clear up the confusion, Disability Horizons have created a detailed guide, below, on shielding vs isolation, how to self-isolate if you’re disabled and where you can find support if you need it.

About Disability Horizons:

Disability Horizons magazine is an online disability lifestyle publication that aims to give disabled people a voice. Founded by two disabled guys in 2011, Disability Horizons publishes articles on a wide variety of topics, all to support the aim of a world where disabled people live exactly as they choose to. You can sign up for our newsletter to get all our articles directly to your inbox


Coronavirus: what is isolation?

The entire UK is in lockdown, which means everyone should be staying at home where possible, except to get essentials or go to work where it absolutely cannot be done from home. These measures are called social distancing. You can find out more about this in our main Covid-19 guide.

But millions of people with disabilities and pre-existing health conditions have been told to go further than this, isolating or ‘shielding’ for 12 weeks.

If you have a disability or health condition, you may fall into one of two groups – ‘high risk‘ or ‘extremely vulnerable‘ – you can click on the links to go straight down to our sections on these groups.

Many of these people have been contacted by the NHS or their GP to advise them on what to do. But we’ve heard of instances where these letters weren’t always consistent or clear.

Some have been explicitly asked to isolate for 12 weeks, while others have been told to ‘shield’.

We also know of people who don’t technically fit into these categories but believe they would be more badly affected if they caught the virus – more on this below.


Isolation and shielding: what’s the difference?

‘Isolation’ or ‘self-isolation’ essentially means staying at home all the time and not going out for anything, including essentials. If you have been asked to do this by the NHS or your GP, it’s likely you’ll need to do it for 12 weeks or possibly more.

‘Shielding’ is effectively the same thing – shielding yourself from getting the virus by staying at home and avoiding contact with the outside world.

However, shielding also means staying away from others in your home. But, for many people, this might seem like an unrealistic and upsetting request, especially at a time like this.

At the moment, the government guidance isn’t totally clear about whether keeping away from people you live with is necessary if they are isolating too. It is also aimed at people living in care facilities, not just in domestic settings.

We think it comes down to common sense, shielding when you think it’s needed, such as because someone you live with is going out to work or regularly to get essentials.

Please note that the term ‘self-isolation’ also applies to anyone displaying Covid-19 symptoms – a new continuous cough or high temperature. If someone does, they should self-isolate for 7 days, and other members of the household for 14 days. Find out more on this by visiting our full guide to Covid-19.

If you or someone is unwell and are concerned or can’t cope at home with their symptoms, go online to the NHS 111 service, or call 999 if it’s an emergency. 

Shielding from others

If you have decided to shield from others in your household, the advice is to stay at least two metres away from them.

If that isn’t possible, you might want to stay in one room and only use common areas, such as the kitchen and bathroom, at separate times.

Use separate cutlery and towels (hand and bathing), and sleep in different rooms if you can. If you have more than one bathroom, use different ones.

Where you need to share an area, get them to clean surfaces they have touched after each use, such as handles on kitchen cupboards, work surfaces, taps and toilet flushes. Keep your house well ventilated too.

They should practise social distancing measures when out and at home. That includes avoiding non-essential contact, staying 2 metres away from others outside and practising good hygiene.

If you have PAs or carers to help with day-to-day tasks, visit our main guide for tips on staying safe when using PAs/carers.

If you are protecting a child who fits into one of the two groups below or who you feel is more ‘at risk’ if they caught the virus, visit the Great Ormond Street website for specific advice on protecting children.


Coronavirus ‘high risk’ groups

You’ll be classed as ‘high risk’ if any of the below conditions or situations apply to you:

  • are 70 or older
  • are pregnant
  • have a learning disability
  • have a lung condition that’s not severe (such as asthma, COPD, emphysema or bronchitis)
  • have heart disease (such as heart failure)
  • have high blood pressure (hypertension)
  • have diabetes
  • have chronic kidney disease
  • have liver disease (such as hepatitis)
  • have a condition affecting your brain or nerves (such as Parkinson’s disease, motor neurone disease, multiple sclerosis, or cerebral palsy)
  • have a problem with your spleen or have had your spleen removed
  • have a condition that means you have a high risk of getting infections (such as HIV, lupus or scleroderma)
  • are taking medications that can affect your immune system (such as low doses of steroids)
  • are very obese (a BMI of 40 or above)

Coronavirus ‘extremely vulnerable’ groups

Also called ‘very high risk’, the following conditions and situations would put you in the ‘extremely vulnerable’ group:

  • have had an organ transplant
  • are having chemotherapy or antibody treatment for cancer, including immunotherapy
  • are having an intense course of radiotherapy (radical radiotherapy) for lung cancer
  • are having targeted cancer treatments that can affect the immune system (such as protein kinase inhibitors or PARP inhibitors)
  • have blood or bone marrow cancer (such as leukaemia, lymphoma or myeloma)
  • have had a bone marrow or stem cell transplant in the past 6 months, or are still taking immunosuppressant medication
  • have been told by a doctor that you have a severe lung condition (such as cystic fibrosis, severe asthma or severe COPD)
  • have a condition that means you have a very high risk of getting infections (such as SCID or sickle cell)
  • are taking medicine that makes you much more likely to get infections (such as high doses of steroids)
  • have a serious heart condition and you’re pregnant.

If you have a condition that isn’t on one of these two lists but you think you might be ‘at risk’, call your healthcare provider to discuss it with them.

All of these conditions are listed on the NHS website and are correct as of 29th April 2020. But as this is a new virus, so research and information are changing all the time.


Who should socially distance, isolate and shield?

Everyone in the UK should be practising ‘social distancing‘ measures as a minimum.

The government website uses both terms ‘isolate’ and ‘shield’ when talking about what people who are in the ‘extremely vulnerable’ group should do.

For people in the ‘high risk’ group, the government advises that they take particular care with ‘social distancing’ measures, but not isolate or shield.

It’s the same on the NHS website – ‘extremely vulnerable’ people are being asked to take extra steps and shield, and those who are ‘high risk’ to be extra careful with social distancing.

But we know that some messages from healthcare professionals aren’t always crystal clear. Our Editor, Liz Ransome-Croker, who assumed she was in the ‘high risk’ group because of a congenital heart condition, has been asked to ‘shield’.

“My heart condition is complex, but I still thought I was only ‘high risk’ based on the government and NHS lists. The letter I received, didn’t specify the group, nor did it clearly tell me to isolate for 12 weeks. But it did suggest that I ‘shield’.

To be honest, I have decided to isolate as much as possible for as long as needed. I am not going out for a daily walk and my husband and I are getting food delivered.

I can order prescriptions online and the pharmacy is just around the corner. When my husband goes for my medication, he’s extra careful, but I am not staying away from him.

Luckily my husband isn’t having to work at the moment (he’s a teacher), so is isolating with me. But if he is needed we’ll need to rethink things and decide whether or not to ‘shield’ me.”

We also asked our DHorizons Tribe about their experiences. Georgie was equally confused by the two letters she received:

“I had a letter from my consultant 3 weeks ago advising me to shield. I then had the general NHS letter last week telling me to shield for 12 weeks from then.

There was no date on the second letter, so I don’t know whether it meant to start the 12 weeks from that point or when the government letter was sent.

I’m just following all the advice and not leaving my house. It is just difficult to completely shield when I have 24-hour care!”

Another member, Roland, has found that communication about what precautions he should take has been muddled: “I got texts, I got the letter, I got phone calls and I got an (unexpected) delivery of basic items from the local authority.

I’m HIV+ and I think the messaging for people with it has been very confusing. HIV was included in the original list of conditions that made a person vulnerable. It was then amended to only HIV+ people with poor blood counts – but mine is good… From what I have heard from others too, it seems inconsistent.”

Added to this, some people who think they would fall into one of the two groups or would be at increased risk if they got Covid-19 haven’t received a letter at all.

This includes our Co-founder Martyn Sibley, who has experienced repeated issues with chest infections. He has decided to self-isolate anyway, and other members of the Disability Horizons team are doing the same thing.

Tribe member Maggie, who also isn’t in one of the groups, told us: “I didn’t get a letter, but I am fully locked down as I have an autoimmune disease and fibromyalgia, which means I have fatigue and pain. I just know how badly I’d get it, I am so hiding away.”

Mum Lorna said: “My daughter didn’t fit the exact criteria for ‘extremely vulnerable’. But we’d been isolating already for about 3 weeks when we got the letter.

Also, prior to the lockdown, the emphasis was on vulnerable adults. Vulnerable children were hardly mentioned, if at all.”

You know yourself and your condition best, as well as your family situation. So think about what would be right for you. But make sure that you speak to your healthcare professional first.

This is particularly the case if you haven’t received a letter and think you should have, are confused by what you’ve been told to do or want to do something different.

Regardless of what’s been said, we’re seeing people erring on the side of caution and choosing to self-isolate/shield where possible, or be particularly stringent with social distancing.


How to self-isolate

If you are self-isolating/shielding, you should stay at home at all times. This includes not going out for essentials or daily walks to exercise.

If you work, you should do so from home. If this isn’t possible, speak to your employer about your options as soon as possible – you can read more on the implications with this in our main Covid-19 guide.

If you can, shop or order medication online, or ask relatives or neighbours to do so for you, getting them to leave them outside. If this is proving tricky for you, or you need additional help, read our section below on where to get help.

If you have any hospital or GP appointments scheduled, speak to your healthcare provider to find out whether it is necessary or can be postponed. If it is essential, they might be able to do it over the phone or on a video call.

As physical fitness is incredibly important, particularly at the moment, it’s worth looking at what exercise you can do at home – take a look at our article 10 exercises to keep fit and flexible if you’re disabled.

Whatever your situation, keep up hygiene measures, such as washing your hands for 20 seconds – particularly if you have had to order something in – and cough or sneeze into a tissue.

Find out more about cleaning measures and how long coronavirus can live on surfaces in our main guide.

Additional advice on self-isolating for 12 weeks can be found on the government and NHS websites.

Remember that if you or someone you know has symptoms, they should be fully self-isolating and shielding from others for 7 days or more.


Where to get for help if you’re isolating

If you’re in either the ‘high risk’ or ‘extremely vulnerable’ group and need help self-isolating, register on the government website for support: gov.uk/coronavirus-extremely-vulnerable or call 0800 028 8327.

Once verified, you should get a letter to confirm what help you will get, which might include free food parcels with essentials and assistance with getting medication.

We have, however, heard that people have had patchy responses and support via this route, so we’d recommend looking at other options too.

Check your local councils’ website to find out what services it is offering in response to the outbreak. Many also have helplines for specific issues, which you can contact via phone, email or contact form.

Your GP, community nurse or main healthcare provider might also be able to point you in the direction of advice and support.

When it comes to food, most of the big supermarkets are offering a range of services during the pandemic, such as special opening times for ‘vulnerable’ customers and priority delivery slots.

There are also a number of takeaway delivery companies adapting to serve essential items instead of fast food, and national organisations offering food parcels. Visit our full guide to shopping safely during the Covid-19 outbreak for full details.

With medications, many doctors enable you to order online and send your prescription straight to your chosen chemist.

Local pharmacies are also trying to adapt to help deliver prescriptions or allow a nominated person to collect medication for you, so speak to yours to check.

You could also try Boots‘ prescription delivery service, as well as online-only prescription services Pharmacy2U and Well.

If none of this will work for you, a number of charities and organisations are preparing to assist with getting essentials.

  • The NHS has recruited thousands of volunteers to help people who are struggling at home. To make use of this service, call 0808 196 3646 (8am to 8pm).
    You can also visit the NHS Volunteer Responders website for more information, and the Royal Voluntary Service (the associated organisation co-ordinating the volunteers) for additional advice.
  • Mutual Aid UK is an online resource where you can search for community groups in your area who can help in a number of different ways.
  • Our Community connects people locally who can help with everything from getting food to picking up prescriptions.
  • The Red Cross has a helpline you can call (0808 196 3651) for advice, information on services available locally to you and emotional support.
  • Local BBC radio stations have a new initiative called Make a Difference, which broadcasts bulletins that share details of help from organisations and individuals in local areas. It is also trying to connect people together during the lockdown.
  • If you have a specific condition, the charity associated with it might be able to offer advice or assistance. For many, this includes a helpline you can call. Here are a few examples to get you started, but there are many more:
    Age UK’s website has a tool that lets you search for support in your local area.
    – The National Autistic Society has a tool that allows you to search for services that are still open in your area.
    Action on Hearing Loss has a helpline (0808 808 0123) and advice on its website.
    RNIB has a helpline (0303 123 9999) and its associated website, Sight Advice, answers common questions.
    Mencap has advice dedicated to people with learning disabilities and a helpline (0808 808 1111) you can call for further information.
    Macmillan Cancer Support has a helpline you can call on 0808 808 00 00, online advice and an online community group.

It’s worth noting that many of these services are only available to ‘high risk’ or ‘vulnerable’ people who cannot get help from friends, family, carers or neighbours.

But it’s worth checking, as that’s not the case for all, particularly the individual charity support lines.

By Disability Horizons