Government Guidance Has Failed Care Home Residents And Their Families

by John's Campaign

Government Guidance Has Failed Care Home Residents And Their Families

by John's Campaign
John's Campaign
Case Owner
John’s Campaign - a voluntary, not-for-profit movement - speaks for people with dementia and their family carers. We are members of One Dementia Voice and work closely with other charities.
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John’s Campaign - a voluntary, not-for-profit movement - speaks for people with dementia and their family carers. We are members of One Dementia Voice and work closely with other charities.
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Latest: Dec. 25, 2020

How you have helped

Thank you all for pledging the funds which have enabled us to keep scrutinising the government guidance to care homes. The initial challenge to the guidance took a long time to make a difference but …

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The Problem

All over the country, in care homes, hospital wards, mental health units and rehabilitation centres, people have been, and continue to be, separated from those who matter most through fear of infection. For half a year now, loved ones - husbands and wives, committed partners, parents and children - have been kept apart from one another.

In the name of safety, terrible damage is being inflicted on tens of thousands of people. 

This damage is especially acute in residential care settings, which are not clinical facilities but intended as people’s homes. We are asking for a judicial review of the governmental guidance that permitted this chaotic and deeply desolating state of affairs. Guidance that has been drawn up without due attention to human rights legislation is not valid guidance. We strongly contend that this is the case, which is why we are asking the government for a judicial review.




Why This Matters

70% of people in care homes are living with dementia. Enforced separation is particularly hard for them; they often cannot understand why they seem to have been abandoned. It is at least as hard for their families, unable to explain unchosen absence or offer reassurance of their enduring love.

Separation is not just distressing: it can cause irreversible harm. 

Dementia is a progressive neuro-degenerative disease that can attack a person’s deepest sense of their self and their place in the world. The essential role of the family carer is to help them hold on to that connection, which is crucial to their survival. People unfortunate enough to get COVID-19 may recover; nobody recovers from dementia. Families know this. They can see how their loved ones have deteriorated without them, and the Office for National Statistics (ONS) confirms that deaths from dementia have risen sharply during the past six months.

It is extraordinarily hard for families to see their section of the population being left behind. Everyone else is being encouraged to go out - to the pub or a restaurant, for a haircut or a massage. TV pictures show children running to hug their grannies. Someone whose spouse is in a care home is not allowed to go there and be with the person they've loved for maybe more than half a century.

The person living in a care home is being given no choice or agency at all, and neither are their family.

Time is urgent. The resident of a care home has an average life expectancy of two-and-a-half years. In nursing homes it is thirteen months. Six of these have now gone. Some people have been allowed window or fence visits, some have sat outside in gardens, and a few have been properly welcomed. For most, it is only once the resident is dying that 'visitors' - family members, partners, children, those most important people - are, finally, allowed in. The legacy of guilt and grief for the survivors may be long lasting.

The only certainty is that when someone is dying, the family member will be finally allowed in. The legacy of guilt and grief for the survivors may be long lasting.




Why The Government Guidance Is At Fault

The guidance published on 22nd July 2020 (revised on July 31st) has performed the extraordinary feat of allowing complete incoherence and randomness alongside blanket solutions. It abdicated responsibility to care homes and local authorities, deeming it an ‘operational decision’ for care home providers and a public health risk assessment responsibility for local authorities. This means that many care homes dare not open their doors to family members, fearing legal and financial liability. Only the government can provide a structure in which care homes can be confident that they will not be blamed for following these essential principles of human rights as well as sensible risk control.




What We Want

A person should have the right to see those who mean the most to them, who they love, wherever they live.

If extraordinary circumstance makes it necessary to restrict this right, that restriction should be applied equitably with the rest of the population. For some people with profound disability, it should not be applied at all.

We are therefore asking that the government reissue their guidance, paying proper attention to the fundamental right to family life and to the individual needs of people living with disability. They need to show leadership and awareness of the problems facing care homes and local authorities. They cannot outsource this. Family carers should be considered as key workers, and must be trusted to behave as responsibly as those who are paid.




Steps Taken

We are one of the hubs to which family carers come and share their stories. We have done our best to campaign for change without taking legal action - considering it a last resort - but now we feel it is unavoidable and have said so publicly. Our solicitors agree there is a case to answer.




Next Steps

Our lawyers are preparing a pre-action letter, to which the government has fourteen days to respond. We will post updates on this site.




Who We Are

We are Nicci Gerrard and Julia Jones, co-founders of John’s Campaign. We began the campaign after the death of Nicci's father, Dr John Gerrard. The campaign is founded on the simple fact that people with dementia need their family carers, and families are not visitors but essential to their wellbeing and happiness.

Our lawyers are Leigh Day and Matrix Chambers. Our start target is £5,000 and our stretch target £70,000. The campaign period is three months.




Some Stories

“I took on power of attorney for my mum, I agreed to be her DOLs representative but I feel her human right and my ability to care for her as I promised and wished to do have been denied.” - Rosie Duncan, daughter of Christine Duncan, who has now died.

Rosie added: “Another particularly potent thing to me was that there was a pub full of people next to the home where my mum was dying. People could still go to the pub but I couldn't see my mum who was dying for more than 30 minutes.”

Dr Angela McIntyre, who has not seen her mother for six months, asks: “How long is this lock down going to continue for care homes and what are the consequences to the residents and relatives and in particular their mental health? These questions should have been at the forefront of the government’s mind as the distress being experienced by people living with dementia is now well documented.”

Suzanne Emmett's mother Dorothy has become increasingly agitated by their separation. Suzanne says: “I feel that she is going to die and she'll go to her grave not seeing her family or feeling our love. I understand that the care homes are keeping the vulnerable safe but what’s better, quality or quantity of life?”

Sally Goodman was allowed to be with her husband in hospital but not in the care home: “It is clear to everyone that my husband needs me with him. It is really a breach of his human rights not to be allowed visits from the person who loves him most, and it is utterly heartbreaking to see how much he is deteriorating.”

“Time is running out for my mum,” says Philip Saville who was allowed to visit his mother, Alwyn, when she was deemed to be dying. “We brought about a change within 4 days, but then were kicked out again because the nurse thought she was not on final days of life care anymore because we had improved her status.” (Alwyn Saville has since died.)

Debbie Williams realises that her husband Ray “clearly cannot understand why he has limited access to his loved ones and this has caused him irreparable distress.”

Carole Quirke says: “I am very aware my husband is slowly dying, and I do not want him to be alone through this awful disease. I would like to add the home have agreed I can be with him when he is in the very final stage. But I would like him to feel loved and cared for now.”




Julia's mother June Jones with Mr C, a gift from her great grandchildren.

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Update 12

John's Campaign

Dec. 25, 2020

How you have helped

Thank you all for pledging the funds which have enabled us to keep scrutinising the government guidance to care homes. The initial challenge to the guidance took a long time to make a difference but importance key principles have now been established - that visiting should be the default position, that visiting arrangements should take individual needs into account and that end of life access is a longer term requirement not merely the last few days. These are all in the current government guidance but it's not always easy to see them actually happening - sometimes care homes are genuinely confused and sometimes families lack confidence to insist. The solicitors at Leigh Day have prepared a Guide to the Guidance and have been keeping it updated. Here is the most recent version. Do share it to anyone who might benefit.

https://johnscampaign.org.uk/post/jcs-how-to-guide-on-care-home-visits-after-19-december-2020

There's more to be done in the New Year but for now, please accept our heartfelt thanks for enabling us to get professional advice and effective action when it has been much needed. Best wishes to you and those who you love.

Update 11

John's Campaign

Dec. 4, 2020

A step forward must not be a step back

With the welcome announcement on the gradual opening up of care homes for visits, will there be real change?  

Our survey (which was posted on this site and which some of you responded to) demonstrates with devastating clarity how the November government guidance conspicuously failed to improve meaningful contact between people living in care homes and their families. Almost half of the 1,049 respondents  saw no improvement in their access to homes across England, while 39% reported that access worsened. A resounding 94% considered that current visiting arrangements failed to meet the needs of the person living in the care home. 85% described the damaging effect on their own mental health. 

This failed guidance has now been superseded by a new document that - on the face of it - finally allows close family and friends indoor visiting, something that was previously only enjoyed by a minority of survey respondents in November. John’s Campaign’s survey is a stark reminder of the cruel gap between principle and practice in care homes across the country. How will change - real, practical change - happen?

Both this new guidance and the November guidance reminds care homes of their obligations under the Equality Act and Human Rights acts and emphasises the principle of individual assessment and cooperative working. The survey shows how rarely this happened. The new document additionally reminds providers of their duty to promote well-being – as enshrined in the Care Act. 

Respondents reported a plethora of excuses from care homes for their failure to enable visits: usually following or waiting for guidance (often from public health or head office). The largest number of respondents had been banned from visiting because the care homes said they were following government guidance. Providers had clearly not grasped what the guidance actually meant. Only 12% respondents said their care home’s visiting policies included making individual risk assessments to accommodate people’s individual rights and needs, and only 6% of family members reported that they had been involved in these. Shockingly only 20% of family members said they had been involved in any Mental Capacity Act Best Interest decisions around visiting for their relative. These include family members with specific legal responsibilities who should have been consulted. 

41% of responses across all care homes reported there was no visiting allowed. The overwhelming majority of those who could visit were looking through windows or shivering in gardens; 23% were allowed indoors with or without screens; less than 3% had been ‘allowed’ to touch.

The John’s Campaign survey allows for a more granular reading of the situation across the country. People can request specific data relevant to particular areas or care providers. (For instance, respondents whose relatives live in the largest and richest care home chains have some of the poorest access: over half the respondents from HC-One, the UK’s largest care providers, had no visits during the period and almost all the rest were confined to looking through windows at the people they love. Only one person reported an indoor visit. Thirty-eight per cent of respondents from HC-one homes said their homes were closed to families following a covid outbreak –current policy only keeps love out, not infection. Does the chain have a resource problem? It’s worth noting that HC-one’s chief executive earns £800,000 (more than 10x the Secretary of State for Health!) while their care assistant rate is only £8.66.

The new guidance is welcome, but it suffers from the usual lack of clarity. It doesn’t define what it means by an “outbreak” which would shut down the home again: the survey shows that almost a quarter of respondents were unable to visit because their home was closed to families because of an outbreak, often for 28 days, twice as long as normal quarantine. While an “outbreak” can be as little as two paid carers testing positive, many homes have lurched from so-called outbreak to outbreak, never opening up to families. The new guidance still treats family visitors as an optional extra, failing to understand them as an essential partner in care or as a key worker. Yet again it fails to clarify – or even mention - visits out of the home.

Above and beyond all of this, John’s Campaign fears that there will still be a cruel gap between words and deeds. We have witnessed the unfolding of a humanitarian catastrophe: 80% of respondents reported that their relative’s mental and physical health had deteriorated as a result of visiting restrictions, with 17% finding it hard to tell – usually because they had no access and poor communication; 85% of survey respondents described the shocking impact on their own mental health (see comments below). 

Is it a triumph of hope over experience to believe that this new guidance is a light at the end of a long, dark tunnel? All too often the survey demonstrates that attitudes have become so entrenched, communication so impoverished, equity between all members of society so flagrantly overthrown, inhumane behaviour so apparently legitimised that it is hard to believe these new words will bring about the change that is so desperately needed.  The care homes now have clear instruction as well as strong public opinion to enable meaningful individual access. Those who chose not to risk behaving unlawfully. The Johns Campaign survey offers a bleak context for the Government’s new guidance. For their good words to become actions the Government must now ensure that practical impediments are removed and the moral and legal principles enforced.

This is the survey:

https://johnscampaign.org.uk/docs/internal/johns-campaign-survey-summary.pdf

Update 10

John's Campaign

Nov. 22, 2020

Asking for your help not your money

Our legal challenge to the government has - on paper - produced better guidance but in too many it instances it hasn't yet produced better access. 

We're testing the new guidance with a survey which we'll use to ascertain more exactly where the problems lie. Then we'll follow it up in whatever way seems most likely to be effective - we'll also make sure we share the information with whoever is writing the post-lockdown document. We're doing everything in our power to achieve positive change now.

Please could you fill in the survey if you currently have someone you love who is living in a care home? If you don't, please think around your friends and pass the survey link to someone who is in this situation. Closing date is Nov 30th and we'll be in touch again to let you know progress and next steps.

Thank you for being part of this.  Here's the link:

https://www.surveymonkey.co.uk/r/XQM6ZKR


Update 9

John's Campaign

Nov. 13, 2020

Different ways of giving

Astrid Williamson who is a singer songwriter, supports Johns Campaign and is offering a Zoom concert on Sunday evening 6pm. Her mother is in a care home and Astrid can't see her. She's offering this chance for people in a similar situation to come together. It'll be a small event (100 guests) but will be recorded for those who are not able to attend & I'll try and put the link on here. Think of this as an experiment - using her professional talent to bring people together as a different way of giving https://www.facebook.com/events/3346870185409471  The invitation is on Facebook but the event is on Zoom  

These are the details from Astrid :

Astrid Williamson is inviting you to a scheduled Zoom meeting.

Join Zoom Meeting
https://us04web.zoom.us/j/76892128014...

Meeting ID: 768 9212 8014
Passcode: wERZ6M

****

"There is a 100 person limit to attending live, if you click the link and sign up I believe you will be able to join. I'm not expecting multitudes, but I will record and post the concert later so anyone can watch it and share if they'd like to raise awareness for the issue."

Update 8

John's Campaign

Nov. 10, 2020

The guidance that gives hope with one hand – and takes it away with the other

Last week the government published new guidance for care homes during the current period of national lockdown. The National Care Forum described it as 'giving hope with one have and taking it away with the other'. It may be legally clever but morally it's as empty as ever. There are real concessions (which of course we'll try and maximise)  but we consider the trappings of perspex screens and intercoms completely miss the point of re-establishing loving human contact with those in great need. And it's still far too easy for individual homes to adopt a negative approach and for local directors of public health (DPH) to institute blanket bans.  So, we keep fighting. 

Currently (10.11.2020) we're

 * awaiting official govt response due tomorrow

*  seeking a meeting with the minister

*  trying to place most positive emphasis on the major change in govt guidance which is that all care homes should have a visiting policy that does assess the needs of individuals and that visiting is encouraged with a variety of means which are suggested but not mandated (though it doesn't feel like that)

*  continuing to press for closest family to be understood as essential to wellbeing and therefore treated as key workers and their access protected throughout local lockdowns and quarantine periods -- the same as staff (and therefore with the same access to testing and PPE) 

*  continuing to challenge any blanket bans on visiting -- eg by local DPH

*  planning a major survey to assess the effectiveness of the positive changes in the new guidance  through this period of national restriction and using the results of this to inform the future direction of our continuing legal action


Thank you all for your wonderful comments and support - you keep us going.

Update 7

John's Campaign

Oct. 27, 2020

Act Two

After enduring unnecessary delays by the Department of Health and Social Care, John's Campaign has at last been able to issue urgent court proceedings to challenge blanket bans on care home visits. We strongly believe that the Government Guidance,  updated on 15th October, is unlawful, and that it has had - and continues to have - a devastating impact both on residents of care homes and their loved ones. 

By suggesting that  in 'high' and 'very high' risk areas, visits should be limited to exceptional circumstances (such as end of life), and that therefore a general policy of exclusion may be adopted, the Government, in our solicitors' words, 'misstates the law' and as a consequence also encourages care providers and Directors of Public Health to behave illegally.

We now very much hope that the Government will this time proceed swiftly, and respond in under two weeks, so that the inhumane situation that has gone on for so long and has caused so much damage and suffering can be brought to an end and those who are in the last stage of their life can be reunited with the ones they need and love and have sorely missed.    

Thanks to you all for all you have done. With determination and hope, Nicci and Julia x

Update 6

John's Campaign

Oct. 21, 2020

The fight continues

We delayed issuing proceedings for a week at the government lawyers' request, because of new guidance they were issuing which we had hoped would end these terrible months of separation, distress, damage and despair. But the revised guidance, while it does at last mention individual rights and circumstances, is nowhere near good enough: there are still blanket bans in areas of high Covid alert, except at end of life, and  even in medium-risk areas, the guidance says only that care homes ‘can’ draw up policies for limited visits, not that they ‘must’.

So we continue. Our lawyers are going full throttle and we will do everything we can to bring about change, and to bring it about as soon as possible. We thank you all for your generosity and support. Forwards together!

Update 5

John's Campaign

Oct. 16, 2020

Compassionate Care - from nurses, not the DHSC

It's been a difficult week as the government lawyers kept asking for delays and making offers which looked as if they might address our concerns, but turned out to be just words. An unexpected  lovely gift came our way, however, and it's this Open Letter in the Nursing Times https://www.nursingtimes.net/opinion/open-letter-infection-prevention-and-control-should-never-be-at-the-expense-of-compassionate-care-16-10-2020/?fbclid=IwAR1_rUH1gfaMcEPV2iTZ_5N2tiC8hMh7iKe_tSee3dpjea8LKWYhPLMJChM

Update 4

John's Campaign

Oct. 6, 2020

Towards a judicial review

After a meeting with our lawyers  yesterday (5th October), we  now know that early next week they will issue proceedings. They will concentrate on the necessity to take individual circumstances properly into account, on the damaging lack of clarity in guidelines, and they will challenge lockdowns in specific areas and on total bans. Meanwhile we are very conscious that each day matters, and although our lawyers are going full throttle, there is still a long road to travel. However, there is increasing awareness of the tragedies that are unfolding in care homes, and growing outrage about the cruelty of the situation, both among the public and in the media. It still feels startling to us that the government will choose to oppose us on this matter, which in the end is about practical kindness, common decency, avoidable suffering and humanity. Keep raising your voices. Keep telling people who can make a difference that this must stop.
Update 3

John's Campaign

Oct. 2, 2020

No evidence of compassion: no time to waste

We received the Secretary of State's response to our pre-action protocol letter yesterday (Sept 30th) and were deeply  disappointed. There was no evidence of compassion for the suffering of care home residents and their families, who have been denied meaningful contact for the past seven months, and no interest in reviewing the guidance that we believe has led to this chaotic and cruel state of affairs. 
Our lawyers agree that there is no time to be wasted moving to the next stage of preparation for court action. Every day is potentially precious to separated families. We expect to be able to share more definite plan next week. Meanwhile we want to thank all the people who are supporting us with their pledges, their experiences, their research and above all their good wishes. 
John’s Campaign is not a company or a charity: it is a movement that represents people living with dementia and their carers, people whose voices are often not heard and who have been shockingly overlooked during the pandemic. We know that you, like us, will not give up until the human rights and individual needs of care home residents are properly recognised and meaningful contact re-established between people who love each other. 
Update 2

John's Campaign

Sept. 22, 2020

Government delay

Late on Sept 22nd we finally received the government's response to our lawyers' pre-action letter - and it was simply to say that they needed an extra week because they are so busy with dealing with the pandemic. As if that wasn't exactly what we are taking them to task about! They now promise a response by Sept 30th. Our lawyers at Leigh Day have written a very strong letter inistsing that this must be a 'substantive' response. Otherwise they will immediately issue proceedings. They fully understand the need for speed. The people for whom we are fighting do not have time to waste. Leigh Day also took the opportunity to spell  out how the guidance on care home visiting contained in the Government's Winter Plan for Social Care (published last Friday) is also potentially unlawful in Human Rights and Equality terms.  If Government intransigence makes court proceedings unavoidable, Leigh Day will be demanding an 'abridged timetable'. We are so sorry that this anguish is being allowed to endure.

Update 1

John's Campaign

Sept. 10, 2020

The letter is now with Matt Hancock

On Wednesday 9th September, our lawyers sent the pre-action letter to Matt Hancock: John's Campaign vs the Secretary of State for Health and Social Care. Now we wait and the clock is ticking....

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