"5 year old daughter with rare disease, shielding list concerns"

We have a 5 year old daughter with Trichothiodystrophy, this is a life-limiting rare genetic condition that affect her by means of a developmental delay, It affects her sight, hearing, speech, weight and growth.  She has a highly compromised immune system and we rely on Nutrini tube feeding, which is done via a peg in her tummy.

In accordance with Scottish Government guidance published on 26/3 regarding the shielding list, as part of the ongoing Covid-19 pandemic.  Annex A, item 4 of this guidance states that those with . "those with rare diseases and inborn errors of metabolism that  significantly increase the risk of infections" are those that should be on the shielding list and are at the highest risk.  This relates to our daughter specifically.

We are currently self-isolating and are a family of 4, we have been in isolation for almost 6 weeks.  We have had no phone call or letter from the Scottish Government,  NHS Scotland or health services we attend as part of our daughter's care to confirm our shielding status.

We are finding isolation increasingly difficult as we cannot shop for ourselves and supermarket deliveries are booked up over a month in advance.  This is causing myself and my husband increased anxiety and concern in an already very difficult and worrying situation.  

I have been very proactive in calling and emailing services to try and resolve the situation, but find myself going round in circles and noone can give me the information we require.  

We believe there may have been an error as the shielding system does not have our daughter's  DoB on it and she has not been identified as someone at risk.