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Covid 19 (Coronavirus) - Information for Shine Members: January 2021

5th January 2021


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COVID-19 (Coronavirus)


26th January 2021

Vulnerability, vaccine rollout process and knowing how to spot a vaccine scam communication 


Coronavirus - am I vulnerable?

There is no evidence to suggest that having spina bifida and/or hydrocephalus automatically increases someone’s risk of getting severe coronavirus disease. The risk is only known to be raised by also having other conditions that increase risk e.g. high blood pressure, obesity, or conditions affecting breathing or lung expansion (in spina bifida this would include higher lesions (thoracic to L1) that restrict lung function/expansion. Scoliosis can also restrict lung expansion). These other conditions would raise your risk to moderate/clinically vulnerable, the group who do not need to shield but do need to take extra care with hygiene, social distancing, and face coverings to protect themselves.  

The people classed as clinically extremely vulnerable people are mainly those with severe lung and immune disorders and diseases, but it also includes some people whose risk has been assessed as high by their doctors based on their individual medical circumstances. These are the only people who need to shield and will have received instructions from their doctors to do so. 

We have seen no research or advice to suggest that people with spina bifida or hydrocephalus, without other complicating conditions would automatically be categorized in either the extremely vulnerable/high risk group or the vulnerable/moderate risk group. 

Vaccine safety 
There is no reason to think that the coronavirus vaccine will be any less safe or effective for someone with spina bifida and/or hydrocephalus. If offered the vaccine we recommend that our members accept. People with spina bifida and hydrocephalus are able to receive all the same vaccines that other people do as part of the standard vaccine schedule, the coronavirus vaccine is no exception. The coronavirus vaccines underwent the same rigorous testing that all vaccines and medicines in the UK do. They have been administered to millions of people so far and reports of serious side effects, such as allergic reactions, have been extremely rare and no long-term complications have been reported. The situation is being closely monitored very closely by the MHRA. The NHS have some excellent information about the vaccines if you’d like to read more about them here. 

All the coronavirus vaccines offer significant protection against severe coronavirus disease, however we don't yet know whether the vaccine can prevent you from being able to spread the virus to someone else. Once you have been vaccinated it is therefore important that you continue to follow hygiene and social distancing measures and to comply with the coronavirus restrictions in your area.  
Vaccine priority 

Based on the information released by the JVCI and contained in the relevant Green Book chapter for coronavirus, we expect many people with spina bifida and/or hydrocephalus to be vaccinated in group 6 (if they have not already been vaccinated due to age or having been part of the shielding group). However, it will be decided on a case-by-case basis depending on your age, other conditions, and overall health. The Green Book is the documentation that outlines the vaccine priority groups, and it’s the green tables on pages 8-10 that cover the appropriate information. 
There isn’t a timetable for the groups, just an order of priority. Different areas of the country are moving through their vaccine lists at different rates, so people in the same priority group may be vaccinated at different times. You will be contacted when it is your turn to be vaccinated, it is important not to contact the NHS for a vaccination before then. 
Vaccine doses 
All of the approved vaccines require two doses to be fully effective, with the second dose given up to 12 weeks after the first. The evidence shows that one dose of a vaccine gives protection in the short term, and the Government has decided to prioritise getting as many people as possible their first dose as quickly as they can. However, everyone should receive two doses within 12 weeks and benefit from the maximum protection of the vaccine. 
When it is my turn for a vaccine, where will I get it? 
You will receive the vaccine in one of the following places: 

  • At a hospital
  • In the community – through GPs and pharmacists
  • In specially designated vaccination centres

In some cases, there may be no convenient or available appointments at a vaccination centre when you first try to book. If this is the case, you can keep trying to book an appointment through the national booking system either online or over the phone as more appointments and locations are being made available. 

People who do not want or are not able to travel to a vaccination centre can wait to receive an invitation to book an appointment through their local GP or hospital service, but they may have to wait longer. You do not need to contact your GP to say you are not attending an appointment at the vaccination centre. 

If you cannot travel to get a vaccine, you should still be contacted. The NHS is working on special arrangements for people who are housebound. 

You also need to be registered with a GP surgery in England. You can register with a GP if you do not have one. 
How will I be contacted? 
The NHS will contact you and invite you to book an appointment when it is your turn. You may receive a phone call from your GP practice, or be contacted by email, text message or letter. Keep an eye out to make sure you receive the message (for example if you have a mobile phone but do not typically use text messages). If your contact details have changed recently, make sure your GP practice has the most up to date information.  

If you receive a call, the person on the phone will tell you the time and location of your appointment. They will also ask if you want them to confirm your appointment time by text or email. 
Booking a vaccine 
Once you have received a letter inviting you to book a Coronavirus vaccine, you can do so by phoning 119 or online. This webpage also has more information about the vaccine and what will happen on the day of your appointment. 

Please do not try to book if you have not received a letter. 

When you book you will need to provide the following information: 

  • Name and date of birth
  • NHS number

You should be able to find your 10-digit NHS Number on your appointment letter, or any other letter or document you have received from the NHS, including prescriptions, test results, and hospital referral or appointment letters. 

If you cannot find your NHS Number at home, you can ask your GP practice to help you. 
How to spot a vaccine scam communication 
Unfortunately, some criminals have been using the vaccine roll-out as an opportunity to take advantage of people waiting to get one.  
It is important to understand how to know the difference between a scam email and a real one, even if the email has an NHS logo on it and NHS blue colours. 

An example of a scam text message which was featured by Which Magazine can be seen here.

Scam emails might display a name which looks like it is from the NHS but if you look at the full email address it is not from an NHS server (for example There may be mis-spelled words in the email. They will contain a link to either ask you to open an attachment or go to another site and ask for more information like a bank account or proof of identity. 

The vaccine is only available on the NHS, and in a real NHS email you will never be asked to pay for it or to provide your bank details. Anything that suggests otherwise is a scam. 

The NHS will never arrive unannounced at your home to administer the vaccine. The NHS will never ask you to prove your identity by sending copies of personal documents such as your passport, driving licence, bills or pay slips. 

When you are contacted about your vaccine appointment, anyone calling should confirm who they are. If you in any doubt, hang up and call back on a phone number that is verified. This could be by looking up the number online or by finding it on an official letter you previously received. 

If you believe you have been the victim of a scam, you should report this directly to Action Fraud either online, or by phone on 0300 123 2040. If someone is vulnerable and you are worried that someone has or might come to your house, report it to the Police by calling 101.  

Things to watch out for: 

  • Don’t click on links or attachments in unexpected texts, emails, or instant messages. Challenge every request for your personal details. 
  • It doesn’t matter what they say or what they know about you, don’t respond to phone calls that feel 'off' or seem a little too out of the blue, hang up, then verify their claims via a trusted method (such as the usual website or official phone number). 
  • Don’t trust anyone coming to your door unannounced, claiming to offer the vaccine. 


5th January 2021

Coronavirus cases and hospital admissions are rapidly increasing, and strict national restrictions now apply in EnglandWales and Northern Ireland.

There are differences in the restrictions between the three countries and from the March lockdown so its important to check the government guidance to make sure you comply. A significant difference from the March lockdown that will benefit many is the continuation of the support bubble system. This means that adults living alone or with children under the age of 18 can visit and be visited by people from one other household. The two linked homes can act as one household, providing essential support and companionship. 

The government have announced that the people who are clinically extremely vulnerable to coronavirus i.e. the people who were previously shielding, should begin shielding again and they will be sent letters shortly with more information.  

The NHS Volunteers programme is available to help and support all those who need it, not just people who are shielding. Volunteers can collect and deliver shopping, medication, and other essential supplies. They can also provide regular, friendly phone calls. Call 0808 196 3646 between 8am and 8pm, 7 days a week to refer yourself or a loved one.    

Medical and social care providers are working hard to ensure services continue to remain open and as safe as possible to use. You should continue to ask for and receive the support you need from the NHS for your existing health conditions. A range of NHS services can now be accessed from home, including ordering repeat prescriptions or contacting your doctors through remote consultation. To find out more visit Health at Home, or download the NHS App. If you have an urgent medical need, call your GP, NHS 111 or, for a medical emergency, such as a suspected shunt malfunction, dial 999.  

We understand these are difficult and upsetting times, and not the way any of us would otherwise wish to start a new year. However, these stricter measures will help keep us all safer and there is hope on the horizon with the approval of a second coronavirus vaccine whose distribution is significantly easier, as it doesn’t require ultralow storage temperatures.  

As in previous lockdowns, SHINE are here to help you through this. If you or anyone you know is affected by spina bifida and/ or hydrocephalus and needs any support or advice please call us on 01733 555988 or email us on  

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