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Staying safe and well

Staying safe and well

Last updated 01/07/20

Disclaimer: Information and advice regarding Coronavirus (COVID-19) is rapidly changing. We are updating the website regularly and aiming to focus our information on areas that are of most significance to people living with EB. As the situation evolves, information will vary across the four nations; you should always consult and follow the advice given by your national government, the NHS and other regulatory authorities.

Many people have had to stay at home over the last few months and many routines have been disrupted. Looking after yourself and your family’s physical and mental wellbeing is very important right now. Habits help keep you healthy and calm during uncertainty, and a having a daily routine that prioritises looking after yourself is key.

If you're struggling and need support, our EB Community Support team are here to help during office hours. Please phone the DEBRA Membership and Community Support on 01344 771961 and select Option 1.

Click on the heading below to be taken to that section:

Mental wellbeing

  • Receiving support
  • Practice mindfulness and try to keep calm
  • Kindness and Mental Health Awareness Week
  • Get plenty of rest
  • Connect with others
  • Try something new or different
  • Limit your news intake
  • Quick tips from the NHS

Physical wellbeing

  • Practice good hygiene
  • Eat well and stay hydrated
  • Get fresh air and exercise

Other concerns


Mental wellbeing

Receiving support

Staying in contact with friends, family and colleagues via video or phone calls is a good way to feel connected. Several charities in the UK have resources to support people who are struggling with their mental health, including managing and coping with stress and anxiety. 

If you require immediate attention, please seek help from any of the following resources:

  • Text SHOUT to 85258 to access a free, 24/7 support service
  • Mind - mental health charity
  • Anxiety UK - charity for those affected by anxiety, stress and anxiety based depression
  • NHS: Every mind matters -  information for looking after your mental health
  • Samaritans (or call 116 123) - charity helping people going through a difficult time

If you require further support, please speak to your GP; if you are worried about debt and how it is impacting your mental health, Money Saving Expert has some great information for Help, info, guidance and support for individuals and carers.

TIP: Visit these websites for help with a wide range of issues.


Practice mindfulness and try to keep calm

Paying more attending to the present moment (mindfulness) is shown to improve your mental wellbeing. Mindfulness focuses on your thoughts and feelings, your body and the world directly around you.

Mindfulness can help you enjoy life more and understand yourself better, as well as positively change the way you feel about life and how you approach challenges.

There are many ways to practice mindfulness; AnxietyUK suggests using the APPLE technique to deal with anxiety and worries about uncertainty:

  • Acknowledge – notice and acknowledge the uncertainty as it comes to mind.
  • Pause – don’t react as you normally do. Don’t react at all. Pause and breathe.
  • Pull back – tell yourself this is just the worry talking, and this apparent need for certainty is not helpful and not necessary. It is only a thought or feeling. Don’t believe everything you think. Thoughts are not statements or facts.
  • Let go – let go of the thought or feeling. It will pass. You don’t have to respond to them. You might imagine them floating away or in a bubble or cloud.
  • Explore – explore the present moment, because right now, in this moment, all is well. Notice your breathing and the sensations of your breathing. Notice the ground beneath you. Look around and notice what you see, what you hear, what you can touch, what you can smell. Right now. Then shift your focus of attention – on what you need to do, on what you were doing before you noticed the worry or do something else – mindfully with your full attention.

Download your copy of the APPLE technique to print and put up in your home. 

Learn more about mindfulness and how you can apply this in your everyday life.

TIPTIP: Our keep yourself well page lists a few apps to help you practice mindfulness.



This year's theme for Mental Health Awareness Week, 18th - 24th May was kindness.

Kindness has the power to create community, support and hope and research shows that helping others promotes physiological changes in the brain which leads to feelings of happiness.  Don't forget to also be kind to yourself as well as others.

Mental Health Foundation have lots of ideas for how you can take part in Mental Health Awareness Week and boost your own as well as others mental health; they have also written a guide on why Kindness Matters.


Get plenty of rest

Sleep is important; good-quality sleep makes a big difference to how you feel mentally and physically. Whilst having to stay at home, try to maintain regular sleeping patterns and keep good sleep hygiene practices – avoid screens before bed, cutting back on caffeine and creating a restful environment.

TIPTIP: Visit the NHS’ Every Mind Matters page for practical advice on improving your sleep.


Connect with others

Good relationships are important for your mental wellbeing. They can help you to build a sense of belonging and self-worth, give you an opportunity to share positive experiences, provide emotional support and allow you to support others.

It is normal and OK to feel vulnerable and overwhelmed by the unknowns of the pandemic and how it can impact your situation. It is important to acknowledge these feelings. Sharing how you are feeling and coping with the situation can help others too.

Try to keep in touch with your friends and family regularly and contact a helpline for emotional support. If possible, take the time to be with your household – try arranging a fixed time to eat dinner together or to play a game. To stay in touch with family and friends outside your home, we’ve put together a list of ways you can stay connected with others.

NeuroLove is a great resource for young people - they can join in with others through virtual group games, take advantage of a free 30-minute therapy sessions and more.

If you are struggling and just want a listening ear, contact your EB Community Support Manager. If you feel you need additional support, the NHS has put together a great list of mental health resources

TIPTIP: Now is a good time to make sure you have the right phone numbers and email addresses of the people you care about.


Try something new or different

Many people now have more downtime whilst having to stay at home. Use this to your advantage and learn a new skill, ‘visit’ somewhere you’ve never been or even discover a new book or TV show. To help you discover what to do next, we’ve put together a long list of different things to do whilst staying at home.

TIPTIP: Don’t do things you don’t want to do – it’s OK not to, especially if this causes you extra anxiety.


Limit your news intake

There is a lot of news coverage about the outbreak. If the news is causing you stress, it’s important to find a balance. Don’t avoid all news; instead, keep yourself informed and educated and limit your intake. Decide a specific time of day and length of time to check the latest news stories.

Try to avoid speculation and only use reputable sources; rumour and speculation can fuel anxiety. Having access to good quality information about the virus can help you feel more in control.

Stay in touch on social media but recognise that some accounts may sensationalise things. If you are sharing content, ensure that it is coming from a trusted and accurate source. Take breaks from social media and mute (or unfollow) things that trigger your anxiety or worries.

TIPTIP: Avoid reading or watching news reports right before bedtime.


Quick tips from the NHS

The NHS recommends five steps to mental wellbeing and their website offers dos and don'ts for each step:

  • Connect with other people
  • Be physically active
  • Learn new skills
  • Give to others
  • Pay attention to the present moment (mindfulness)

For more information on each of these steps and to see the dos and don'ts, visit the NHS website.



Physical wellbeing

Practice good hygiene

Simply washing your hands with soapy water regularly can help stop the spread of viruses. Hygiene advice suggests washing your hands more often than usual, for 20 seconds with soap and hot water (sing ‘happy birthday’ to yourself twice to make sure you do this for long enough). Watch this video clip from the NHS for advice on how to wash your hands.

Keep your home clean and tidy whilst you are spending more time there. Cleaning, doing laundry and keeping up your personal hygiene (such as bathing) is important to stop the spread of germs. If you live with others, decide how to best use the space together, as well as what each person needs to feel more comfortable.

TIP: Visit our FAQ page for specific advice about washing your hands if you have EB.


Eat well and stay hydrated

Your appetite might change if your routine changes or if you’re less active than you were previously. Eating regularly and keeping your blood sugar stable can help your mood and energy levels. Mind charity offers some great tips on eating healthy and boosting your mood.

Drinking enough water is an important part of staying healthy. Set an alarm or use an app to remind you to drink enough water throughout the day.

Watch this useful video on boosting your immunity by Lynne Hubbard, Principal Dietitian for adolescents and adults with EB working in partnership with DEBRA.

TIP: Be mindful of potentially harmful habits – like drinking alcohol and smoking.


Get fresh air and exercise

Fresh air and natural sunlight help with feelings of anxiety and are shown to boost your mood. Gentle and light exercising can have the same effect and is a great way to set goals or challenges and achieve them.

The best approach is to find activities you enjoy and make them part of your lifestyle. Check out our growing list of things to do to keep yourself well.

TIP: If you are a wheelchair user or have limited mobility, the NHS and Parasport websites have a range of fitness guides and tips and routines to help you stay active.



Other concerns

There are still a lot of unknowns. Avoid jumping to conclusions about who is responsible. Anyone can be affected by the coronavirus, regardless of gender, ethnicity or sex.

Please visit our FAQ and Resources pages for more information; if you have any other concerns (e.g. benefits, housing, etc.), please contact your Community Support Manager for advice – no ask is too big or too small.