Shine news
18th February 2021
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.
Regular updates on Covid-19 (Coronavirus) can be found below.
January 2021 I December 2020 I November 2020
October 2020 I September 2020 I August 2020
July 2020 I June 2020 I May 2020 I April 2020
The priority for the vaccine is based on who is at most risk of serious disease and death from coronavirus. Read the JCVI advice on priority groups for the COVID-19 vaccination
A lot of our members have been wondering about their vulnerability to coronavirus, their eligibility for the vaccine, whether the vaccines are safe and effective, and what has changed with the shielding guidelines announced on the 16th of February. Here we answer those questions:
There’s no evidence to suggest that spina bifida and/or hydrocephalus alone automatically increase coronavirus risk. The risk is moderately raised by also having other conditions that increase vulnerability. This includes higher spina bifida lesions that affect breathing, or spinal curvature that reduces lung expansion, it also includes other conditions that our members may be affected by such as epilepsy, high blood pressure, obesity.
Scientific understanding of who is most vulnerable to coronavirus has improved over time, not everyone asked to shield last spring is still considered clinically extremely vulnerable, and some new people have recently been added. The shielding criteria mainly cover severe lung and immune disorders, but more people are now included based on clinical assessment of their individual medical and personal circumstances.
1.7 million people have been added to the shielding list based on new risk modelling from the University of Oxford. The model is a personalised risk assessment that takes into account all the medical and personal circumstances that are known to affect coronavirus vulnerability (the risk of severe illness and death). You may have heard that people with certain neurological conditions have been included, but this does not include spina bifida and hydrocephalus. There are over 600 different neurological conditions and not all of them affect coronavirus vulnerability, the ones that do, shown by the new modelling are:
Not all of these conditions will automatically mean that you are at high risk and need to shield, they will be added together to produce a risk score that includes several health factors and your personal circumstances. Some conditions such as Down’s syndrome make someone clinically extremely vulnerable so people living with these conditions will need to shield and will be vaccinated in group 4. Other conditions such as epilepsy will increase your risk but you would only need to shield if this was combined with other health conditions and circumstances that mean you’re at high risk overall.
The government have updated their guidance on shielding to reflect this latest modelling. One of the shielding categories is now for people “identified through the COVID-19 Population Risk Assessment as potentially being at high risk of serious illness if you catch the virus.”
The new criteria may affect some of our members, and those whose vulnerability classification and vaccine priority has changed will be contacted. If you are affected you will receive letters instructing you to shield and inviting you for a vaccine. If you do not receive a letter, then you do not need to shield.
Based on official vaccine guidance, we expect many of our members to be vaccinated in priority group 6. However, priority will be decided on a case-by-case basis depending on age, other conditions, and overall health.
Unpaid adult carers also come under group 6, to help prevent a situation where your carer was too unwell to support you. They need to be registered as an adult carer with the GP to be assigned to vaccine group 6. They can register as a carer via the surgery’s website or by calling.
Different areas are vaccinating at different rates but at the current pace everyone in the first 9 priority groups will have been offered their first vaccine by 6 weeks time. The next phase of vaccines will be rolled out further and all adults over 16 who want a vaccine should receive it by the autumn.
Keep an eye on the NHS website for up-to-date information about when and how you will be invited to book your vaccine.
Will children be vaccinated?
Because the risk of severe coronavirus disease in children is very low there are currently no plans to widely vaccinate the under 16s. There are some rare exceptions e.g. older children with severe disabilities in residential care, but generally speaking because children are very low risk from coronavirus, the vaccine won’t (yet) be given. There are some clinical trials underway to test the vaccine in children as young as 6 years old so it may eventually be rolled out to children as a way to stop the virus circulating. If/when this happens, we will be sure to let our members know.
How will they know which group to put me in if I don’t see my GP very often?
Your risk assessment and inclusion on the priority list is based on your whole medical record not just on the conditions you have seen your GP about. It’s a good idea to just make sure your GP has your up-to-date contact details though so that you can be invited for the vaccine.
All the coronavirus vaccines offer significant protection against severe disease. The vaccine should be just as safe and effective for people with spina bifida and/or hydrocephalus. When offered the vaccine we recommend you accept.
Once vaccinated you should keep following hygiene, social distancing, and face-covering measures, and must comply with local/national coronavirus restrictions.
Spina bifida and hydrocephalus are very heterogenous conditions – there is a vast amount of variation in the type and severity of physical effects. There is no “typical member” so we don’t feel that labelling all members as equally high-risk and disabled would be clinically accurate or helpful.
The vaccine priority list has been carefully, and transparently drawn up based on the specific aspects of health that affect coronavirus risk. There is no evidence, or physiological reason, why having spina bifida or hydrocephalus alone would automatically increase risk. However, many of our members with one or both of these conditions may also have relevant risk factors and so will be included in the vaccine priority group 6 (see “Am I vulnerable?” section above).
The criteria for inclusion in the different vaccine groups is very fair, and evidence based. We do not feel that any of our members whose risk is increased are likely to be unfairly excluded: many have already been safely vaccinated, and many more will be vaccinated in priority group 6 based on their individual medical circumstances.
We appreciate the anxiety that waiting for the vaccine is causing, but the vaccine roll out is progressing very quickly. The people vaccinated in the first 9 priority groups are those with conditions and circumstances that represent 99% of the people who have died from coronavirus – the most vulnerable. The sooner all those in the priority groups are vaccinated, the sooner the pressure on the NHS will be reduced and the sooner routine healthcare services become more widely available to our members. It is in everyone’s interest that the most vulnerable are protected first.
These are difficult times but SHINE are here to help. If you need support or advice please call 01733 555988 or email us at firstcontact@shinecharity.org.uk and we’d be glad to assist you.
Stay safe.