Government faces legal challenge over guidance on care home visits causing 'avoidable suffering'

Families of care home residents are mounting a legal challenge to the government's guidance on care home visits in England, on the grounds that it violates their human rights and is causing 'avoidable suffering'.

Over 20,000 care home residents in the UK have died from COVID-19 and from March, care homes all over the UK took the decision to stop family and friends visiting residents in a bid to reduce the rates of infection.

In July, the government announced that care homes in England could reopen to visitors, stating visitors had to wear PPE and where possible residents should only have one regular visitor with visits taking place outside.

Indoor visits are allowed in Wales with one designated named visitor and outdoor visits can involve more than one visitor. In Scotland, indoor visits are also allowed again with just one visitor and outdoor visits can take place for up to three visitors from two households. In Northern Ireland, care homes can allow one person to visit at a time, with a second person allowed 'where possible'.

Lawyers acting for the dementia campaign group John's Campaign are seeking a judicial review of the government's coronavirus guidance issued in July for care homes in England. They want the guidance changed so indoor visits are allowed as well as more than one visitor. John’s Campaign also wants the families of people with dementia to be seen as 'key workers' so they are given the same access to visit family members as care staff.

'Care homes have been put in a difficult position'

The campaign group says it is responding to families' pleas for changes to guidance. John's Campaign was set up in 2014 after co-founder Nicci Gerard's husband Dr John Gerrard, who had dementia, was admitted to hospital. His health deteriorated quickly after family visits were stopped due to a norovirus outbreak at the hospital.

Nicci Gerard's friend and co-founder of John's Campaign, Julia Jones told carehome.co.uk: "I hardly dare pick up the phone because of the distressed family members who ring up asking for help. Some people haven't seen their husbands, wives or parents since March.

"Family members are just as important as care workers and even if there is a local lockdown, the same precautions with PPE etc should be taken to allow family to see residents.

"People are fearful they will never see their loved one again, unless they get the call to come to their deathbed. For some people with dementia, separation is actually worse than the risk of infection. Once they deteriorate it can't be reversed.

"The care homes have been put in a difficult position. It's not their fault it's the government's. Only government can sort it out."

The legal challenge is being backed by Sara Livedeas, chief executive of the Fremantle Trust, which runs 11 care homes for 1,100 elderly residents in Buckinghamshire. She has said care home visits should be able to take place with risk assessments and careful management, adding "when people have visitors you have much better outcomes: fewer falls, far better emotional wellbeing".

Restrictions are 'disproportionate'

Two legal firms Leigh Day solicitors and Matrix Chambers have been instructed by the campaign group to launch the first stage of a legal challenge against the government's advice with a pre-action letter.

Julia Jones added: "We believe, and our lawyers agree, that the guidance has been drawn up with no acknowledgement of human rights. Article eight of the Human Rights Act gives people the right to family life and it doesn't say you don't get it in a care home.

"In a national emergency that right can be restricted proportionately but now this is disproportionate."

"John’s Campaign believes that the rights and choices of vulnerable care home residents throughout the country are being ignored and that this is causing avoidable suffering. The best care homes are finding their own way towards sensible, individualized solutions. Others lack the confidence which clear government direction would give. Meanwhile families are missing irreplaceable time together – time they know is limited." The campaign group has instructed lawyers to deliver the pre-action letter "which will go out probably today or tomorrow" and while the government has two weeks to respond "we hope they will change the guidance."

The John's Campaign is crowdfunding its legal case and has raised over £5,000 to date (8 September).

'I have not seen my mum for over six months'

Families are growing increasingly frustrated and angry and tens of thousands of people have signed a petition demanding the government change its care home visit guidance to allow more than one visitor in England. More than 65,000 people have to date (8 August) signed the petition.

Retired doctor Dr Angela McIntyre launched the petition with the words: 'I have not seen my 92 year old mum who suffers from Lewy Body dementia for over six months.

'In our case, my sister is the designated visitor, so as it stands I can only visit my mother if she is dying.

'This is so upsetting. I’m calling on the Government to improve visit rights for care homes now, before it’s too late.

'Time is incredibly precious at her age and we’ve already lost six months. When I Skype with her, she repeatedly asks me where I am and why I have not visited her - it is heartbreaking.

'Carers are allowed to sit with residents like my mum, wearing PPE and then go home to their families. Why can’t I do the same?'

In July, charities, including Dementia UK and the Alzheimer's Society, wrote to the Health Secretary Matt Hancock demanding relatives of care home residents with dementia be treated as key workers.

The charities' letter also called out the inconsistency of visiting guidance across the UK nations.

'Many care homes are looking to offer better regime for visits'

The Residents & Relatives Association is also campaigning on the issue and wants to see the guidance changed to support care homes to safely open up.

It wants care home residents to be allowed to have more than one visitor saying only allowing one is "inhumane, impractical and has created painful decisions for families".

It also wants the government to get rid of time limits on visits and make clear that these are not required and are distressing. In addition, the R&RA wants regular testing and privacy during visits stipulating that staff shouldn't chaperone visits.

Its stance is backed by Richard Hawes, chief executive of Elizabeth Finn Homes Ltd, who says: "The government needs to provide clearer guidance which works for residents, families, and the care sector; many of whom are looking to offer a better regime for visits, but the current out-of-date guidance does not support this.”

To read the latest care home visiting guidance for England, Scotland, Wales and Northern Ireland click here