A group which campaigns for people with dementia to be supported by family carers says the Department of Health and Social Care (DHSC) changes to guidance for visiting in care homes during the Covid-19 pandemic do not go far enough.
John's Campaign, led by Julia Jones and Nicci Gerrard,
welcomes the move to introduce individualised assessments for care
home residents living in 'medium risk' areas, in line with
the calls they have been making of the DHSC for the past six
months. The Government Guidance now recognises that visits to care
home residents must be supported in medium risk areas on the basis
of individual assessments of a resident's wellbeing, health and
However, John's Campaign are disappointed that the changes published October 15 still encourage unlawful blanket bans on visits in 'high' and 'very high risk' areas.
John's Campaign was set to file a claim for judicial review of the DHSC July guidance to care homes this week, claiming it did not reflect the law and encouraged unlawful decisions by care providers, but at the DHSC's request they did not issue as updated guidance was promised.
Following publication of the Guidance, John's Campaign have vowed to fight on as the new Guidance which they have branded 'confusing' and 'divisive' suggests that the legal obligations to carry out individualised risk assessments only apply in 'medium risk' areas – and that as soon as the Covid infection level moves up the scale, blanket bans can be re-imposed. John's Campaign maintain that is wrong, and unlawful.
It fails to take into account the obligations that arise under the Equality Act and Human Rights Act, and it ignores the extremely destructive effect of suspending visits, particularly on people with dementia who we know are dying at higher rates than any other year, directly as a result of the isolation they are experiencing. Nicci and Julia are concerned that, even in medium risk areas, the guidance only says that care homes 'can' draw up policies for limited visits, not that they 'must'. Too many care homes have remained stubbornly closed to families since before national lockdown in March.
Their pre-action protocol letters to Secretary of State, Matt Hancock, had relayed multiple stories of the devastating impact on heartbroken families of the blanket ban on visiting loved ones in care homes during lockdown and the very limited access for families since July. They argue the measures contributed to the excess deaths of 5,404 dementia patients in lockdown, a rise of 52.2 per cent, the largest increase in non-Covid-19 deaths compared to any other health condition. Many experts as well as families themselves, have commented on the obvious evidence of mental and physical deterioration in care homes residents though this period.
The DHSC announced that visiting guidance to care homes has been modified:
- Care homes can now draw up a policy to resume visits in areas that are not deemed 'high risk' or 'very high risk'.
- In such areas an individualised assessment should be made for each resident, taking account of the importance of visits to resident's health and wellbeing, particularly where they suffer from conditions such as dementia;
- Approaches should be decided by the local director of public health together with the care provider, with consideration of their legal obligations under the Equality Act 2010 and Human Rights Act 1998.
- Where homes are in high or very high risk areas visiting should be limited to exceptional circumstances, such as end-of-life.
- In those areas, virtual visits should be arranged for family members.
Julia and Nicci said that an open letter published in the Nursing Times today summed up their own response to the changed guidance.
It said rules of infection should not prevent family members entering a home, even during lockdown and that infection control and compassionate care are not mutually exclusive.
The letter presented a six point plan of action that would enable families to visit their loved ones in care homes safely.
Julia and Nicci said:
"We welcome the belated recognition that people in care homes are not a vulnerable mass with no voice of their own, who can therefore be treated identically, but a community of people each with their unique personalities, situations and needs.
"However, the new guidance fails to offer real improvement for the hundreds of thousands of people who have had no meaningful contact with their loved ones for over seven months now, and the continuing imposition of outright bans in many parts of the country is harmful and wrong and we will continue to challenge it.
Leigh Day partner, Tessa Gregory said:
"The pandemic will be affecting us all throughout winter and large swathes of the country have already been designated as 'high' or 'very high risk'. It is therefore absolutely crucial that individualised risk assessments are carried out everywhere in order to allow care homes to strike an appropriate balance between infection control and the need to ensure vulnerable individuals have access to family contact and care.
"It is time for the Government to recognise that for many of those living with dementia meaningful contact with their family is as essential to their survival as infection control. The updated guidance is confusing for care home providers and encourages blanket bans on visits and that simply does not reflect the obligations under the Human Rights Act and Equality Act to take individualised approaches."
John's Campaign are represented by Tessa Gregory and Carolin Ott of Leigh Day and David Wolfe QC and Jessica Jones of Matrix Chambers.
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