Care home visiting guidance which could have enabled more people to see their loved ones was "hidden" from families during the pandemic, the Scottish Covid inquiry has heard.
Natasha Clare Hamilton told the inquiry that she only became aware of rules around essential visiting for care home residents in "distress" or in end-of-life situations by chance after she was contacted by another social media user in September 2020.
Her mother, Anne Duke, had been diagnosed with early-onset Alzheimer's disease aged 56 in 2014 and in 2018 - by which time she was non-verbal with advanced dementia - she had been admitted to a care home in East Kilbride, South Lanarkshire where her husband and daughters were regular visitors, sometimes spending whole days helping with her care.
Ms Hamilton, 37, said her mother's dementia symptoms - which left her mainly bedbound and unable to eat or drink unassisted - meant that at least one family member should have been allowed in to help ease her distress.
However, she told the inquiry that this government-issued guidance on essential visiting "wasn't widely known" and when she emailed her mother's home she was told they were aware of the guidance, but were not enabling it.
READ MORE: Relatives 'physically restrained' from hugging loved ones with dementia
Ms Hamilton said she is "annoyed that at that time I didn't push for it" but said there was a feeling that "you didn't want to rock the boat".
She added: "You don't want to upset the people who are looking after your Mum, and you're so exhausted by fighting all the time that you just accept an answer."
Ms Hamilton has gone on to campaign for Anne's Law to give families a legal right of access to their loved ones in the event of any future pandemic.
She added that while essential visiting guidance had been drawn up it "wasn't working", with relatives rarely informed about it and care homes mostly failing to implement it.
She said: "It felt like if you had someone in a care home, you had to fight, you had to read between the lines, you had to really go and look for it [guidance].
"It felt like it was hidden information...It can be quite easy to write up guidance and put it out there but we have to make sure it's being followed through and actually working.
"I think every person who had a loved one in a care home should have known about essential visits from day one."
READ MORE: Covid 'just nature's way of dealing with old people', inquiry told
Mrs Duke died in the home on November 2021 with a diagnosis of Alzheimer's and pneumonia.
Breaking down in tears, Ms Hamilton told the inquiry that she had missed her mother's passing "by seconds" because her father and sister were already inside and "we had to stagger who was coming into the care home".
From March 2020 until August 2020, Mrs Duke's family were unable to visit her at all despite communication via telephone or videocalls being impossible due to her condition.
Prior to Covid, the inquiry heard that her husband had been a "semi-permanent resident" with the care home allowing him to "almost camp out" to look after his wife.
In a witness statement read to the inquiry, Ms Hamilton said her vulnerable mother's life had been "torn to shreds" when she was cut off from her family.
When visiting resumed, it was restricted to outdoor "garden visits" at the entrance to the home with two-metre distancing and a care worker present at all times, meaning she had no privacy with her mother and "had to shout".
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The family was finally granted essential visiting for the final year of Mrs Duke's life, from November 2020, after a GP diagnosed her as end-of-life.
The SNP has committed to implementing Anne's Law, but Ms Hamilton told the inquiry that the Bill currently going through the Scottish Parliament does not go far enough.
She said: "The former First Minister stood up and said in September [2021] that Anne's Law will be put in place to allow care home residents to have access to their relatives in the same way staff do - that's not what's happening at the moment.
"Until that's what's in place we'll have to continue fighting for it."
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