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

26th May 2020


If you have been affected by the current situation and are in need of Shine's services, click on the link below to find out how we can support you at this difficult time.

We are committed to continuing to deliver our support, advice and information services for you.

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

Click here for archived updates from April 2020.

Click here for archive updates from March 2020

COVID-19 (Coronavirus)


18th May 2020

New government guidelines 

The coronavirus approach and guidelines in the UK now vary depending on which country you live in. In Northern Ireland and Wales “stay at home” remains the central message. In England only this has been replaced by “stay alert” and this has since been explained to mean:  

  • Stay at home as much as possible 
  • Work from home if you can 
  • Limit contact with other people 
  • Keep your distance when you go out (2 m if possible)  
  • Wash your hands regularly 

People who are shielding should continue to shield. This table summarises what the government advice is for everyone else, and how it differs, in England, Wales, and Northern Ireland.  

Click here to view full size.


Hospital passports 

With coronavirus still widespread in the community, it is worth thinking ahead, in case you or a loved one needs admitting to hospital. Collecting information together that would let staff know how to care for you best, should you need to be admitted, will be helpful, especially if the person has communication or learning challenges. It can also be helpful to prepare information about your bladder and bowel care (for example staff would need to know about your Mitrofanoff or ACE), or any equipment you need to protect your pressure areas. Having this information prepared, all in one place, can help prevent problems arising.

Shine has produced an ‘easy read’ version of a Hospital Passport, which can be downloaded here.

Some members have been disturbed by calls or letters from their health services urging them to discuss their treatment wishes with their family, in case they become seriously ill. Of particular concern is discussion around Do Not Resuscitate orders (DNR). These apply to treatment given to people, if they stop breathing or their heart stops, to try to revive them. They don’t apply to any other decisions, for example, intensive care. We have heard of families being contacted by Health Workers, and told to think about signing a DNR order, which has caused anger and upset. Some families will already have discussed their wishes for intensive care, or at the end of their lives, or plan to,  but you should not feel you have to have this conversation if it is not right for your family. You absolutely should not feel pushed into agreeing to anything or signing orders. This is your decision to make, no one else’s. If you do have preferences on your treatment (such as ventilation and other intensive care), make these known to the hospital staff on admission, and have them recorded in your medical notes.  Ideally let your next of kin know what your treatment wishes are so that if necessary, they could tell the hospital for you. Blanket policies based on age or disability are not allowed, and there should be no discussion at all around resuscitation for children or young people; it should be attempted if needed.  

Children admitted to hospital still have the right to have a parent stay with them, which is particularly important for young children, children with communication or learning challenges, or those with autistic spectrum disorders. If the risk of you staying is too great, the reasons need to be explained to you, so be prepared to ask and challenge. 

Some of our members have expressed concern that routine appointments for their children, tests and investigations, and post-op check-ups have been postponed. We understand these will be restarted as soon as possible, but at the moment hospitals are stretched, and they are trying to minimise the risk of spreading coronavirus. In the meantime, if you’re concerned about your child’s or your health, do contact your specialist teams, or your GP if you’re not under the care of a specialist at the moment. The teams are still working, and should respond to your concerns, even if they don’t see you in Outpatients. If you’re very concerned about an urgent situation, such as suspected shunt blockage, do go to A&E or dial 999. 


1st May 2020

Some of our members are reporting difficulties getting food. We’ve put together this information to help you.

Having spina bifida and/or hydrocephalus does not mean you will be in the highest risk group for coronavirus who need to shield at home. Shielding only applies to those who are clinically extremely vulnerable to severe coronavirus disease. This is people with severe lung disorders and diseases, and those with very weak immune systems due to disease, disorders, or medications. You only need to shield if you have been informed by your doctor to do so. If you think you should be shielding and have not been told to, contact your GP. 

Most people can still go out for food and medicine as long as good hygiene and social distancing measures are followed. 

The only people who cannot go out to shop for essentials are: 

  • Clinically extremely vulnerable people who are shielding (people from their household can still go out) 
  • Anyone in household where there is an active coronavirus infection 

We understand there may be other issues such as mobility problems or reduced public transport that might prevent you getting groceries this way. However, just in terms of coronavirus risk anyone not shielding, and not part of a household with an active coronavirus infection, can still shop if they need to.


Some things to consider when out shopping: 


  • Wash your hands regularly and use sanitizer gels. Do this after handling cash, touching surfaces such as doors or baskets/trollies. Wash your hands with soap and water as soon as you return home and wipe any doorknobs or surfaces you touched when you came in, with hot soapy water on a cloth.  

Supermarkets and shops are rapidly adapting to be able to protect customers and staff so you may notice changes such as:  

  • Maximum numbers of shoppers allowed in which may create a queue to enter. This is also known as “one in one out” policies 
  • Sanitizer gels and wipes may be available (though it’s a good idea to bring your own) 
  • One-way systems in store with 2m sections marked out to keep shoppers a safe distance apart 
  • Perspex screens at the checkout

If you need any particular special assistance or adjustments because of your circumstances, please make yourself known to a member of the supermarket staff. 

Times when you might need this are: 

  • If you find it difficult to stand in a queue because your mobility, pain or other aspects of your condition please ask for priority access. 
  • If you are a carer and have to take a disabled or vulnerable person with you to the shop because they cannot be left at home please let staff know why  you need to navigate the shop together. 
  • If you or the person you care for has problems adhering to social distancing or one way systems because of problems with vision, cognition, behavioural traits, processing issues etc. you can ask for the help or accommodations you need. 
  • If you have a severe time constraint because you are a carer and need to get back to the person you care for to feed them or administer medication etc. please ask for priority access.  

Some things to consider if you need a home delivery but aren’t shielding: 

  • There are some slots available from the major supermarkets but they’re quite limited so you will have to be patient and keep checking and trying: E.g. New Tesco delivery slots are released online at midnight. Morrisons slots are released throughout the day and you join a virtual queue before being allowed onto the site to complete your shop. 
  • If you are struggling to get a delivery slot and you drive, consider using click and collect. It’s set up in contact-free way and there are many more slots available from Sainsburys, Tesco, Asda and Morrisons. 
  • Some supermarkets are now offering food boxes with better availability for delivery, often next day. These boxes can be ordered online from Morrisons, Aldi and Marks and Spencer's. 
  • If you’re struggling with preparing meals: Wiltshire Farm Foods that deliver across England and Wales may be a helpful alternative, they provide nutritious ready meals at reasonable price. You can call their main customer service line: 0800 077 3100, or go on their website. Morrisons also have a ready meals food box that you can order online for next day delivery. If you live in Northern Ireland, contact your local council for details of companies that deliver ready meals. Alternatively, you could phone a local butchers or grocery shop as they sometime prepare and deliver fresh meals.   

If you have explored these options and they’re not suitable or you’re still struggling for help with your shopping you can try the following:

  • Contact the NHS volunteers on  0808 196 3646  (8am to 8pm). They can arrange to deliver food and essentials to you. 
  • Many pharmacies are able to deliver medication. If you are unable to collect your medication, and have no one who can help with this, contact your pharmacy to see if home delivery is available. If not, then ask a trusted friend, relative or carer, or contact the NHS volunteers as they can also deliver medication. 
  • You can also ring your local council helpline. 

Some things to consider if you’re in the shielding group: 

  • Weekly food parcels can be delivered to you if you register for them.  
  • Your details should also now have been passed to the major supermarkets to enable you to access home delivery slots.  
  • If these haven’t happened and you need help, contact your local authority. 

Please let us know if you are unable to get supplies of food or medications and we will do our best to help you. Contact us by phone (01733 555988) or email ( Monday – Friday 9am – 5pm.

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