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Covid 19 (Coronavirus) - Information for Shine Members: June 2020

23rd June 2020


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Regular updates on Covid-19 (Coronavirus) can be found below.

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COVID-19 (Coronavirus)

23rd June 2020

Resources for children and young people 
Health Education England have assembled a library of coronavirus resources for helping children and young people. It is full of useful resources including: stories to help explain coronavirus to younger children, information about what parents need to know about coronavirus, and posters about wellbeing. You can find the library here
Early support information about behaviour  

During this time of great disruption to our usual way of life, your child may be struggling to adapt to all the changes and this may impact on their behaviour. The council for disabled children has produced a fantastic information resource that can help you if have concerns about your child’s behaviour.
Department of Education information 

The Department of Education have lots of information on their website for educational providers and other partners about supporting vulnerable children and young people during the coronavirus (COVID-19) outbreak. Vulnerable children in this context are those with an Education and Healthcare Plan (EHCP), those assessed in need under section 17 of the Care Act 1989, or those identified as vulnerable by an education provider or social services. You can find this information here.
Back to school information 

Plans to get all primary school children back for 4 weeks before the summer holidays have been dropped but some year groups (0, 1 and 6) and nurseries have started to return, along with some secondary year groups (10 and 12). Not all schools have reopened, some on the advice of local councils and some due to staffing issues or lack of space to accommodate pupils safely.  
We covered back to school advice in our update on the first of June here.

Much of this advice still applies to other year groups as they return. Briefly summarised the update said: 

  • Children are at lower risk of severe coronavirus disease than adults but the risk is not zero. 
  • Spina bifida and hydrocephalus do not automatically increase the risk of severe coronavirus unless lung function/expansion is affected by a high lesion or curvature of the spine. Other conditions, diseases or treatments may increase risk if your child also has these, for a complete list see the NHS website
  • You can discuss any safety concerns you have with your child’s school. The key areas to check on are: hygiene, cleaning, and social distancing.  
  • If you’re still not comfortable with the measures in place after talking to the school, you are currently able to continue to home school without being sanctioned. 
  • The decision to send your child to school or to home school them is personal and not one that we at Shine can make for you. You need to assess what balance of risks versus benefits of being in school you are comfortable with. 

Information for Wales and Northern Ireland 

The Children’s Commissioner for Wales have an online coronavirus Hub with information and resources.
COVID-19 (coronavirus disease) in children 

We know that children tend to get a milder version of coronavirus and scientists have lots of theories about why that might be. Some theories were based on the idea that children might have a stronger immune response to the virus when they first encounter the virus or that they might have been recently exposed to similar viruses and have some immunity from that. There is increasing evidence from research that it is healthy blood vessels that protect children from serious coronavirus complications such as stroke. If you’re interested to read more about the link between blood vessels in children and milder coronavirus disease, this Nature article looks at this in more detail. 
Spina Bifida Association – coronavirus information for parents 

The SBA is an American spina bifida support organisation and they’ve produced some helpful videos about caring for children during the coronavirus crisis. Not all of the information is applicable to the UK but much of it is still relevant and useful. 

16th June 2020

Lockdown easing 

As lockdown measures are being eased against scientific advice, it is extremely important that we carefully follow social distancing and have excellent hygiene. The World Health Organisation have warned that the UK remains in a “very active phase of the pandemic”. There is a danger that people keen to return to normal may have become complacent about the risk of catching and spreading the virus, which has not become less harmful over time.   
We must all obey the law, and should as a minimum follow the public health guidance from the relevant public health body:  
Public Health England

Public Health Wales

Public Health Agency Northern Ireland 
Government advice can be briefly summarised as: 

  • stay at home as much as possible
  • work from home if possible
  • limit contact with other people as much as possible
  • keep your distance from others if you go out (2 metres apart)
  • wash your hands regularly with soap and water, use sanitiser
  • do not leave home if you or anyone in your household has symptoms. 

More detailed, country-specific government advice is available here: EnglandWales and Northern Ireland
The CDC have some excellent advice about keeping safe when you venture out which can be found here.
The less contact you have with others the better from the perspective of reducing coronavirus risk and spread, but you can increasingly balance these risks with a little more social contact and limited activities such as some non-essential shopping. 
In England and Northern Ireland people living alone (and single parents of dependent children) are now able to form a “support bubble” with one other household. This means they can treat the two separate households as one: they can spend time (including overnight stays) in each other’s homes and do not need to stay 2 metres apart. This arrangement must be exclusive, you can’t change who the bubble is formed with and it can’t be with multiple other households. 
NB: This rule does not apply to Wales. In Wales, people from two different households can meet each other outdoors. However, people still need to stay two metres apart, and should remain within five miles of their home. 
Masks and face coverings 
A well-designed cloth mask combined with infection control behaviours (hand washing, social distancing) does have some protective benefits, but homemade cloth face masks vary in effectiveness against coronavirus and so should not be relied on isolation. In England, face coverings are now mandatory on public transport, but in the rest of the UK and in other potentially crowded, indoor situations you may also want to consider a face covering e.g. shops, pharmacies. It is better to avoid these places, particularly at busy times, but a mask is worth considering where this isn't possible. This detailed BBC article covers the most effective materials for homemade masks and their use.
Loneliness can affect us all at any time but during lockdown it has become a much bigger problem for many more people, particularly those who are shielding. The government have launched a campaign to help tackle loneliness and there’s lots of information and advice available on their website. The Marmalade Trust have also made an excellent guide with practical steps to feel less lonely.

Track and Trace Scam  
Unfortunately, some criminals have begun to use the new Track and Trace service for coronavirus to scam people out of money.   
How the Scam works  
You have a call, it may be from a phone number that appears to be genuine. The real test and trace number is 0300 0135 000. However, there’s a trick called number spoofing where a caller can make it look like they’re ringing from a different number to the one they’re really using so you can’t tell just from the number whether the call is genuine.  The caller will say you’ve been in contact with someone with coronavirus. They can’t tell you who, as it’s confidential.  
They take your address and tell you that you need to pay for a test.   
They then ask you for your banking details and take your money.  

The real test and trace will never ask you:  

  • To call a premium rate phoneline (e.g. those starting 09 or 087)  
  • For any form of payment or for bank account details  
  • For any passwords or PINs, or ask you to set up any passwords or PINs over the phone  
  • For any social media information or login details, for you or your contacts  
  • To buy anything – including a test 
  • To download anything or to hand over remote control of your PC, phone or tablet 
  • To access any website that does not belong to the Government or NHS.  The only website the real test and trace service will ask you to visit is  

If any of these things happen: hang up immediately and report the call to Action Fraud, by calling 0300 123 2040 or by visiting its website.  
Hospital Services  
As the number of coronavirus cases begins to come down, hospital services will slowly begin to return to normal. How quickly this happens will depend partly on the number of coronavirus cases in the local area, and this is varying from place to place. Also, wards that have been used for coronavirus patients are becoming empty at different rates and can be brought back into general use after deep cleaning. Some children’s hospitals or specialist hospitals without A&E won’t have cared for as many coronavirus patients, so will have been able to continue some services.  

There will be a backlog of missed appointments and cancelled procedures and operations to get through. Some outpatient appointments are being done by phone. Some tests and investigations that need to be carried out under anaesthetic may be a longer wait, as anaesthetists are key staff on intensive care wards so have been very busy recently.  
We would strongly advise anyone who has urgent concerns about their health, or the health of their child, to go to A&E. Medical staff are very worried about how long people are waiting before getting help, meaning they are sicker than they would otherwise have been when they arrive at hospital.  
People with concerns that aren’t life threatening, should still let their hospital know. It may take some perseverance to get to speak to your usual contact person, but do keep trying. Hospitals are still open, and safely caring for people with conditions other than coronavirus.  
For people concerned they have missed routine check-ups, post op follow-up, etc, if you or your child are fine, it is OK to wait until you are called. However, if you have any concerns, do let your healthcare team know.  
The NHS website has excellent information and advice about when and where to get medical help during the coronavirus outbreak.
If you need admitting to hospital it is worth considering taking a copy of a hospital passport which can be placed at the end of your bed for those involved in your care to read. Hospital passports are useful documents to have prepared as they contain lots of useful information to let staff know how to care for you best, should you need to be admitted. Shine has produced an ‘easy read’ version of a Hospital Passport, which can be downloaded here and completed electronically before printing.  


1st June 2020

Lockdown changes

Significant changes to Government guidance and restrictions have now been made and again there are differences across the UK. This table summarizes the main changes in what you can and cannot do in England, Wales, and Northern Ireland:

Click here to view full size.

Extremely vulnerable people in England and Wales that have been shielding from coronavirus will be able to go outside again from Monday but only to meet one other person from another household (while observing social distancing). Support for those shielding will continue across the UK, and no changes have been announced for Northern Ireland. The change is designed to ease the mental health toll of isolation but this freedom must be used carefully as people in the group remain at high risk of severe complications in the event of catching coronavirus.

All the changes to the lockdown restrictions have been decided by the government after considering many factors, including information provided by SAGE (Scientific Advisory Group for Emergencies). However, Chief Scientific Officer Patrick Vallance has made clear that the decisions about when and how to ease lockdown are made by ministers and not by scientists. Several prominent SAGE advisors have expressed concern that too many lockdown restrictions are being lifted too fast, a concern echoed by a number of experts and organisations.  In the UK we have made significant progress towards reducing the spread and impact of coronavirus but this is an extremely sensitive time in the outbreak and we must exercise great care to prevent a second wave. As individuals we must obey the law, and should as a minimum follow the public health guidance Government advice; PHE advice.

How much further we go with protective measures and behaviours is a personal choice. The less contact you have with others the better from the perspective of reducing coronavirus risk and spread, but this can now be balanced with meeting other needs and preferences, including social contact. It is for individuals to decide how to best strike their own balance between coronavirus safety and the wellbeing benefits of connectedness, exercise, fresh air etc. In all cases, caution should be exercised, and social distancing and hygiene measures strictly observed. If you are vulnerable or live with someone who is vulnerable it is good to get in the habit of showering and washing your clothes when you return home as an extra precautionary measure.

Returning to school

The decision to allow your child to return to school is a very personal one and not one that we at Shine can or should make for you. However, we can provide information on some things to consider when deciding what the best thing to do is:

  • There’s no evidence to suggest that having spina bifida or hydrocephalus automatically increases someone’s risk for getting severe coronavirus disease. The only conditions that are known or suspected to increase risk are listed by the NHS here.

A couple of things to note when reading the NHS advice:

  • Where “having a condition affecting the brain or nerves” is listed in the moderate risk group, this does not include either spina bifida or hydrocephalus. There are over 600 different neurological conditions and while some of them are associated with raised risk, there’s no evidence that spina bifida or hydrocephalus are risk factors.
  • Where “lung condition that’s not severe” is listed in the moderate risk category, this would include people with higher spina bifida lesions (thoracic to L1) that restrict lung function/expansion. Scoliosis can also restrict lung expansion.
  • The risk of developing severe coronavirus disease is not zero in children, but it is much lower than the risk in adults, particularly the over 60s. Less clear is the risk of transmission: scientists are currently divided about whether or not children are less likely than adults to catch and spread coronavirus. See this Nature article for a more detailed discussion about the risk of infection, and infection severity, in children. The main reason schools have been shut to most students is not for the protection of children, it is for the protection of older and vulnerable people they might spread the virus to. Should your child return to school you will need to consider the contact they then have with older or vulnerable relatives and friends.
  • Government guidance for schools and childcare settings on protective measures can be found here.
  • If you are unsure or are worried about whether your child’s school is adequately prepared for the safe return of pupils, we suggest you discuss your concerns with the school. It is important that you are comfortable with the protective measures they have put in place. The key areas to check on are: hygiene, cleaning, and social distancing. An independent scientific advisory group (Independent SAGE) have created a risk assessment that you can use to frame your discussions about the changes they have made for the safe return of pupils. The risk assessment is Figure 2 on page 16 of the report here.
  • If your child has specific needs such as personal care, you can also ask the school to explain what measures they are taking to ensure these needs can be met safely. Reasonable adjustments should be made to ensure your child can learn and be cared for safely.
  • If after talking to the school you’re still not confident in the measures they have put in place, then you are still able to continue homeschooling and would not be sanctioned for doing so.

Special Education Advice and Coronavirus

IPSEA (Independent Provider on Special Education Advice) have produced a detailed Q&A resource about how coronavirus measures affect children and young people with special educational needs. You can find this information here.

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