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
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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: 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,…

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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.

Recent contributions

  • Someone pledged £10
    Match their pledge of £10
    My 23 year old brother is resident in a care home, we are desperate to see him. We miss him with all of our hearts, and this enforced separation has caused unforgiveable levels of sadness and desperation for us and him.
  • Joan pledged £100
    Match Joan's pledge of £100
    A very sincere and heartfelt thank you for all your endeavours. Appreciated more than you will ever know.
  • Vanessa pledged £25
    Match Vanessa's pledge of £25
    Please win. Our wry physically healthy 20 year old severely autistic son live in care home and is not allowed to come home or us to visit. We used to have him hike very weekend. He has mental age of 2 and doesn’t understand why we are again disappearing from his life. He can’t talk.

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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

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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