Hi all. My daughter with CP is shielding, and the information on vaccines is vague to non-existent.

179nim

Hi all,
Just a general and mundane question considering the times, however! I have a daughter with CP who is 11, I assume that she is miles off being able to receive a covid vaccine.

Information is vague to non-existent, for this situation. I understand some exceptions exist but detail into that is difficult to locate.

The poor girl has shielded for nearly a year now and the lack of community and aid is taking it's toll on her physically.

Cheers

Cher_Inactive

Hello @179nim and welcome to our community.

I hope you and your daughter are keeping well, and I can only imagine the toll its taking    These are exceptionally hard times and I hope our community can support you through it.  

We had a similar recent question about CP and the COVID Vaccine and the general consensus is that people with CP will be 6th in line to receive it.  Within that thread, is a link to the government greenbook on the vaccine which you might find informative.  I know I hadn't seen this before and information really has been scarce.

Have you had time to have a look in our Cerebral palsy discussion group?  There are lots of threads in there where people have shared similar stories that you might be able to relate to.  Also, we have a resident CP information specialist @Richard_Scope who is great at answering questions and offering knowledgeable input for anything CP related!

How are you both today?

179nim

Thank you for this @Cher_Scope , as with many others it hasn't been easy especially was we don't share residence.

Thank you for the information, my concern is the lack of information for under 16's.

It concerns me that the shielding under 16's are being left to fester. The mental and physical toll it is taking on them and their carers is awful.

Again thank your for the information.

chiarieds

Hi @17 - & welcome to the community. I also came across the Covid Green book the other day. The roll out for the vaccine as you mention is for those aged 16+, & vaccine trials have only just begun in children, so not much as yet can be known. However, & I quote, 'Children and young people have a very low risk of Covid-19....'

It seems at present that children with CP would only be considered for vaccination if they spend 'regular time in specialised residential care settings....'

The green book also says that this is 'Provisional recommendations for the use of the vaccine.' I would imagine that as scientists learn more things will keep evolving. As the vaccinations roll out, it will make things safer for all, & your daughter's GP may be able to advise more fully hopefully in the not too distant future.

Tori_Scope

Hi @179nim! Welcome to the community. I can only imagine how difficult it must be for you both. 

Is she able to keep in touch with any friends she might have remotely? Of course it's not the same as meeting up in-person, but it can be a real mood lifter to have a quick phone or video call with a friend. 

Richard_Scope

Hi @179nim
Good to meet you.
Is your daughter classed as Clinically Extremely Vulnerable? If not she doesn't have to shield. Most people living with CP will be number 6 on the vaccine rollout list. Unless they have additional issues such as respiratory or swallowing (dysphagia) difficulties. As with most things this list is subject to change I would imagine.

WestHam06

Hi @179nim, 
                      How are you? Welcome to the community and thank you for joining us. I can only imagine how tough it is for both your daughter and you and the impact that shielding is having. Please may I ask, has your daughter managed to keep in touch with friends or family remotely? I can see some of our wonderful members have answered your questions, but please if you have any other questions, do ask, and we will do our best to answer. We are a friendly and supportive community. Thank you.