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CLDF BLOGS

Coping with a new normal for families

During this new way of living and working, it’s important to think about how coronavirus (COVID-19) will impact your family, those children with a chronic liver condition and those on immunosuppressant medication.

Here are some of things you need to think about during this time. We will be developing follow up blogs and resources to support you in these areas over the next few weeks. We are not discussing these things to raise anxiety but to help you prepare for a new way of family life in the short term.

Remember at this stage (24 March) there have been very few reports of children becoming severely unwell due to coronavirus even with underlying health conditions. Specialist paediatric centres have indicated the children they care for are doing well. Until recently, guidance from the government did not explicitly refer to children with underlying conditions. However, liver disease is mentioned in the social distancing guidance and solid organ transplant recipients and immunosuppressed people of all ages are referenced in the government’s list of extremely vulnerable.

Social distancing, isolation and how to cope with it

You may have asked the question “what is the difference between social distancing and self-isolation?”

Social distancing is limiting unnecessary social interactions to try and reduce the spread of the virus within society. Self-isolation should be undertaken by those with symptoms of coronavirus who do not require hospital treatment. They must remain at home and away from others until they are well. Self-isolation also applies to those living with someone who has symptoms of coronavirus.

The government has advised that everyone in society should now undertake social distancing, but this is especially important for children with a chronic liver condition and those who are immunosuppressed to ensure they are protected. Immunosuppressed children and transplant recipients should be shielding which is explained further below.

As of 23 March there have been more stringent measures put in place to ensure people are abiding by the social distancing guidelines with police enforcement. You can leave home only for:

  • Shopping for basic necessities
  • One form of exercise a day
  • Any medical need/care for vulnerable person
  • Travelling to and from work, only if absolutely necessary

Social distancing can be boring and frustrating. There are simple things you can do that may help to stay physically and mentally active.

  • Exercise and keeping active is even more important now for both your family’s physical and mental health. The NHS website has low impact exercise ideas which you can do at home. You can also go for a walk outdoors or sit in the garden. Online fitness tutorials may be helpful such as Joe Wicks ‘PE with Joe’ and Cosmic Kids. Remember to stay more than two metres away from others.
  • Remember to laugh and spend time together and doing things you enjoy such as reading, cooking, family activities/games, listening to the radio or watching TV and movies.
  • The weather should be improving so keep your windows open to let in fresh air, get some natural sunlight if you can. Make the most of getting into the garden.
  • Amazon-owned Audible is opening up a free-to-listen catalogue of children’s stories while children are off school due to the coronavirus outbreak. https://stories.audible.com/start-listen

CLDF will be sharing some fun and interactive activities for families to engage in throughout this time. However, you can also request to join the Facebook group ‘FAMILY LOCKDOWN TIPS & IDEAS’ for advice from other parents across the UK. There are currently over 700,000 members.

It may be difficult to socialise in the way we are used to, but you can try to develop a ‘new normal’. If your children miss time with grandparents arrange a set time in the day when they have phone calls or if they miss their friends, consider video calling.

Protecting those with chronic liver disease and immunosuppressed

Everyone is being advised to socially distance to help stop the spread but those with some underlying health conditions need to take even more precautions to protect themselves and the government has called this strategy shielding.

Who should be shielding? Those most at risk will receive letters or text messages from the NHS strongly advising them not to go out for 12 weeks. At risk individuals include solid organ transplant recipients and those immunosuppression drugs and people with severe respiratory conditions – cystic fibrosis, severe asthma and COPD. You/your child will receive a notification from the NHS if they are in this highest risk category.

It is important to remember to continue encouraging other children and family members to protect your child diagnosed with a liver disease by keeping good hand hygiene and social distancing guidelines according to public health bodies. There are some easy to read guidelines on how to shield those children who are high risk within the household on the BBC website https://www.bbc.co.uk/news/health-51997151.

Some families may be in the difficult position of self-isolating in different areas of the house if there are members of the family who have symptoms of coronavirus. Remind children that you are separated in order to protect them and reassure them that they can still communicate with others through video calls, phone calls and messaging etc.

It’s key to remember that your family may be more prepared for these circumstances than others due to protecting your child from other viruses and infections since their diagnosis. Remember that you have the resources and resilience through previous experiences to build on and help you manage this time.

Impact on finances, jobs and working from home

A major impact of coronavirus is the effect on jobs and finances. Due to school closures, those who can work from home now have the added pressure of childcare responsibilities.

There has been some support from government in these areas. Employers have been urged not to cut jobs through a package of measures allowing companies to receive grants to pay their workers 80% of their salaries – up to a limit of £2,500 a month. Benefits payments are also to be increased. Sick pay rules have been adjusted with individuals being able to claim from the first day and the self-employed will have their tax liabilities delayed. Read the helpful breakdown of measures to support finances and jobs https://www.bbc.co.uk/news/business-51628524.

If you require any specific support or concerns in this area, please contact our support team who may be able to advice and signpost you to appropriate services. They can be contacted by emailing families@childliverdisease.org or calling 0121 2126009.

Education

Many schools have been closed since 20th March. This means added pressure on parents if they need to continue to work and don’t fall under the key worker category. This may also lead to concerns about children’s educational development and overall grades.

For those due to undertake GCSEs, AS and A Levels this year, it has been announced that these will be awarded based on mock data, individual assessment and prior attainment. Students can also sit exams early next academic year or summer 2021. The Department of Education stated that they will ensure that this year’s students do not face a disadvantage.

Many schools, colleges and universities have developed plans for education to continue at home, whether this be packs/resources or online tutorials and lessons.

Some families may find that developing a schedule and structure for the day e.g. times when they need to undertake schoolwork, when they can have a break and times when mum and dad are working and should not be disturbed, works for them. But it is just as important to not put pressure on yourselves and prioritise your children’s wellbeing and use this time as an opportunity to bond as a family. Here is a great quote in an article by The Guardian from a teacher:

“Great learning only happens when children feel happy, safe and secure. Provide your children with reassurance and love.”

You can read the full article on tips from teachers here: https://www.theguardian.com/education/2020/mar/23/let-your-kids-get-bored-emergency-advice-from-teachers-on-schooling-at-home. We will have more tips and advice for working from home with children of different age ranges and the impact on education coming up soon.

Talking to children about COVID-19

In these uncertain times reassuring children as well as keeping them entertained can be tricky. They may have lots of questions either about the virus, how it affects them and how it affects their grandparents and older friends of the family.

Here are some tips that may guide you:

  • Ask children what they have heard
  • Reiterate practical advice such as washing hands
  • Reassure them that everyone is doing everything they can to protect them
  • Give them knowledge where appropriate to allow them to feel informed

Look out for further information and resources on CLDF social media and blogs to help you talk to children such as Dr Ranj’s video https://www.youtube.com/watch?v=oMHacLHchI0&feature=youtu.be 

Keep calm, relax your mind and support each other

As we have discussed many times, your family’s emotional wellbeing and mental health is just as important as their physical health. Isolation, social distancing, financial and work pressures as well as uncertainty about this situation can cause greater anxiety. Every Mind Matters has great advice on how to manage this https://www.nhs.uk/oneyou/every-mind-matters/.

The team at CLDF and our community of liver families are here for you throughout this time. Our support team is available through email, social media and calls should you need any advice, signposting or a listening ear. We are providing regular updates on our website and social media pages.

Take care of each other and we’ll come through this stronger together.

To remind us to cherish the happy moments here are some lovely comments from shared by families on International Happiness Day last week:

“Loving isolation because I get to spend every day all day with my treasure”

“My little trooper fights her way through everything thrown her way”

 Note:

For up-to-date government information and guidance on the coronavirus please visit: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

Children’s Liver Disease Foundation coronavirus information: https://childliverdisease.org/coronavirus-updates/

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