Ministers have been charged with breaking promises and failing families by 'reneging' on a post-Covid pledge that people living in care homes will have the legal right to have visits from loved ones even when there is a new pandemic.
There were concerns that even in the first months of this year, that families still did not have regular contact with their relatives in care homes more than two years after the start of the pandemic.
The Scottish Government said in March that that would change after it put a proposed Anne's Law into national standards.
It said that delivering Anne's Law in legislation would "ensure that people who live in adult care homes have rights to see and spend time with the people who are important to them".
Residents were to be allowed a named visitor into the care home even when restrictions are in place.
Anne's Law is named after Anne Duke whose family campaigned for better visiting rights during the pandemic.
READ MORE: Whistleblower nurse fears official Scots Covid inquiry 'cover-up'
But her family is concerned that what is proposed in the beleaguered National Care Service (Scotland) Bill - which was paused following concerns raised by local authorities and trade unions - gives no legal rights at all.
Mrs Duke's widower Campbell says Anne's Law has effectively been "kicked into the long grass" and does not provide relatives with any rights of access beyond what was in place during the pandemic.
A bid to decouple Anne's Law from the bill so that it can be implemented has also so far failed, he said.
Anne, who died in November 2021, aged 63, as a resident of Whitehills Care Home in East Kilbride was cut off from her family while battling early-onset dementia and at points in the pandemic, did not see anyone from her family for months.
A carer in care homes for much of her working life, she was 56 when she was diagnosed with Alzheimer's in 2014 and was admitted to a care home in 2018.
The bill was meant to introduce visiting rights for residents living in adult care homes, giving legal force to Anne's Law and ensuring residents have the right to remain connected with those important to them.
A petition to the Scottish Parliament, lodged in November 2020, called on the government to allow a designated visitor into care homes to support loved ones.
Subsequent public consultation on Anne’s Law found widespread support for the overall aim - that people in care homes should always have the right to see their loved ones.
Family carers want to be recognised as essential care-givers, with the same access rights to care homes as staff.
But it has not yet been enacted into legislation, with stage 1 of the National Care Service (Scotland) Bill expected in the new year. It is not yet known when all the stages will be completed.
According to the Care Inspectorate, discussions are being held with relevant stakeholders regarding the detailed provisions of the Bill to ensure any necessary restrictions to visiting during an outbreak are balanced with people’s health and wellbeing needs and their human rights.
Clause from the proposed legislation.
Widower Campbell Duke, who was married to Mrs Duke for 36 years and have four children, believes the Scottish Government is reneging on the pledge.
"I remain very concerned that Anne's Law has been kicked into the long grass of the NCS [National Care Service] with unwanted caveats enabling Public Health and/or the health minister to either allow visitation or deny.
"This is hardly an advance on the status quo during the pandemic. If anything, it legalises the ability of Public Health to ban the relatives by law, whereas previously it was 'merely' a guideline."
There are concerns that the published Bill relating to care home visits does not give any rights at all above that which was in place during the pandemic.
Explanatory notes to the Bill states that Scottish ministers would have a "duty" to exercise a power imposing requirements in relation to care services "in order to require providers of homes to comply with any direction they make about either or both of visits to residents of care home accommodation or by such residents".
It requires ministers to "consult with Public Health Scotland and any other person ministers consider appropriate before issuing a visiting direction". It goes on: "Ministers will also have power to vary or revoke a visiting direction."
Mr Duke added: "In any case the NCS bill - already with a grossly delayed Stage 1 Vote not now due until late January 2024 - is garnering much opposition amongst Civic Scotland which may eventually lead to the Bill being scrapped."
The retired social worker, who spent 20 years in child care and 10 years within a hospital setting, added: "They are disinclined to decouple Anne's Law from the bill. It is being chucked into the long grass. As the husband, I am pretty teed off with it.
"They have paid too much lip service and do not intend to do it. What the bill does is worse rather than better and I am tired of being strung along.
"I say to the government, change the mindset.
"Let us not remain mired in considerations as to why we cannot pass Anne's Law.
"Quite simply we need a 'can do will do' attitude from government and the determination to make it happen."
It comes after Scotland's Covid inquiry heard that care home residents were like "exhibits in a reptile house" because of pandemic restrictions that limited visiting.
Campbell Duke
Legal representatives of care home relatives said the restrictions had an "unnecessarily disproportionate" impact on people in homes.
Care Home Relatives Scotland, said many residents were left at times feeling "isolated, unheard, and discriminated against".
Mr Duke said his wife's human rights were "stripped away" by the pandemic and an "unblinking bureaucracy that cruelly denied her the love and companionship of her family and friends right up until her dying day".
He said: "I forgive Alzheimer's and I forgive Coronavirus. These two beasts simply fulfilled the measure of their creation.
"However, in my heart I find it challenging to overlook the high-handed arrogance of the social care industry, and in particular its terrifying determination to 'care' for Anne at any cost. They savaged her soul with their almost messianic duty of care, and their insistence on separating her from the love of her family and friends right up to the moment of her death.
"We must never lose sight of our humanity and the unique beauty of the individual. The slavish application of a risk-averse anti-infection protocol killed the song in our hearts, without which we are nothing.
"We are told All You Need Is Love. To deny such love to Anne and so many others remains the greatest sadness."
He said that he recalled his last night with his wife when they sang her favourite John Denver's Annie's Song.
He said it was "not for the faint hearted" when they sang the line from the song: "Let me drown in your laughter...let me die in your arms".
He said he first knew he was forbidden to enter the care home on March 13, 2020 when he says he was told: "You can't come in, we're in quarantine and no one's allowed in".
He said he was not 'allowed' back into the home for a further seven months from then to October 29, 2020.
He added: "I am not angry with Alzheimer's. I am not angry with Covid. But I am angry at the incredibly restrictive rules and regulations that were enforced upon us and knowingly made Anne and our lives a misery - and denied our humanity.
"Government must never again be allowed to imprison our most frail and vulnerable in such an inhumane way. It has been despicable, heartless, and relentless.
"At the very least and it is but the least - Anne's Law must be passed.
"The aim of Anne's Law is to establish by statute, the right for one nominated relative to be with a person in a pandemic situation or any other similar such situation as often as they feel the need to, with no restrictions. Nobody will have any right to interfere with that. And if a care home or any other relatives want to challenge that, then let them go to court or campaign outside parliament.
"The right to family life should be the default position."
The government's National Care Service (Scotland) Bill has been criticised for its lack of detail.
Under proposed changes, adult social care - and potentially other areas including drug and alcohol services and children's services - would be taken out of the hands of local authorities and given to newly-formed, regional care boards which would ultimately be responsible to ministers.
Scottish social care minister Maree Todd said: “We are absolutely committed to the Anne’s Law provisions within the National Care Service (Scotland) Bill. We have used our existing powers to ensure they are adopted now through strengthening the Health and Social Care Standards for care homes to introduce some provisions now – including that people living in care homes can expect to see family members or friends in outbreaks and are able to name people who can directly participate in meeting their care needs.”
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