Rights for Residents is a grass roots campaign founded by Jenny Morrison and Diane Mayhew that aims to end the inhumane bans on visiting loved ones in care homes and other care settings. Together with our members we are the voices of those locked away unable to speak. We will fight with every breath in our bodies to resume visits and see our loved ones before it’s too late.
How Rights for Residents began
The Campaign began in response to an extremely distressing window visit to Jenny’s mum, Jean Morrison, who lives in a nursing home and has been denied meaningful contact with her family for over eight months. Jean has advanced dementia and is unable to recognise us at the window, which causes her to become upset and confused. This particular day, she broke down in tears, put her head in her hands and said that she’d never smile again. Given that her nickname in the home is ‘Smiler’, we were heartbroken! Being on the other side of a closed window, we had no way to comfort her and came away from the window feeling upset and powerless. Jean has no understanding of why she has suddenly been abandoned by her family, who between them visited five full days a week prior to lock down. Witnessing the rapid deterioration in her mental and physical health, we decided we’d had enough of being shut out of the care home.
We wanted to reach out to other relatives experiencing the pain of separation and who were suffering the guilt of leaving a loved one imprisoned with no end in sight. The very next day I contacted BBC Radio Merseyside to raise the issue locally.
A local BBC TV appearance soon followed and we noticed that our video clip on the BBC North West Tonight Facebook page had received over 37,000 views in less than two days. We quickly came up with the name Rights for Residents and set up a dedicated Facebook page to unite with other families who found themselves in the same situation. We’ve been inundated with devastating stories from others who are also witnessing the physical and mental deterioration of their loved ones, resulting from eight months without family contact.
When restrictions were eased for vulnerable members of our society on the 1st August, we expected the same for those living in care homes. However, this wasn’t the case and we wanted to raise awareness of this to the wider public.
Through our Campaign families have come together and no longer feel alone in their fight to change this and Rights for Residents has become a national campaign group. Members are actively lobbying MPs, Government Ministers and the media in order to get our voices heard.
Just twelve weeks on and Rights for Residents have over 197,000 signatures on our petition and have received a huge amount of publicity. Rights for Residents have appeared on ITV This Morning, BBC Breakfast, Channel 4 News, BBC Radio 4 Today, BBC Radio 5 Live and LBC Radio to name but a few. We’ve also featured heavily in the national newspapers including the Guardian, Daily Telegraph, Daily Mirror. The Daily Express has ran a series of major articles in support and The Daily Mail are now running a very powerful series campaign which is gaining support from high profile politicians from across the political spectrum.
Our message to the Government is simple:
Grant key worker status to relatives with access to rapid tests to enable safe face to visits to resume.
Indemnify care providers – as they have done for the NHS – as they are frozen by fear of litigation if a visitor was to take the virus into a care home
We are calling on the Government to find a more humane and nuanced solution that balances the risk of contracting Covid-19 against the devastating mental and physical deterioration we are witnessing.
Recently. the Government bowed to pressure from campaigning organisations, major charities, and experts by producing new guidelines. The Minister for Care, Helen Whately claims that the new Guidance offers the solution to reuniting families with their loved ones. However, this couldn’t be further from the truth and the fact is that restrictions on visits have become even harsher.
Quoting the new Guidance, many relatives have contacted their care providers, only to be told that all visits will now be banned unless they take place behind floor to ceiling screens or at a closed window. Some have even banned these. A few are permitting indoor visits with screens relatives feel that this is not a visit but a “viewing”!
There is inconsistency in how the Guidelines are interpreted across the country. The Local Directors of Public Health are supposed to be working with Local Authorities and care providers – and can interpret them as they see fit – which has led to a postcode lottery.
The floor to ceiling screens suggested in the new Guidelines have left families distraught as they feel their loved ones are being treated like exhibits in a zoo rather than human beings in need of social contact. The £7.5 million investment on tablets and i-pads, is completely misplaced. Those with dementia, communication difficulties, sensory impairment, learning difficulties or who are bed bound are unable to access the technology. Many find Skype and Zoom confusing and upsetting and simply don’t recognise their relatives on the screen. Surely this huge sum of money would have been better spent on testing relatives and providing indemnity for care homes as these two issues hold the key to opening up care homes.
Rapid testing has now been rolled out to a whole city region. We are at a loss as to why the Government haven’t prioritised these rapid tests for relatives who haven’t seen their loved ones in care homes for over eight months. Once again, the virus is getting in to care homes via staff. Test results are taking too long got come back, by which time the virus has spread to residents and staff. Care staff are understandably going about their daily lives – which is not a criticism – but a fact and many have school age children who as we know can spread the virus. The Government’s claim that the bans are keeping residents safe doesn’t hold water. Residents are not only contracting the virus but they are in grave danger of dying from loneliness and isolation. Charities have produced statistics to show that many excess deaths since March are a direct result of people simply giving up the will to live. The Alzheimer’s Society have called this a “Hidden Catastrophe”. Rapid tests would resolve both of these issues.
They say they are encouraging care providers to facilitate safe visits but in reality their advice is preventing this. They encourage window visits but these are not acceptable in Winter for frail, elderly people visiting their wives, husbands, partners, mum’s, dad’s, daughters, sons, siblings etc. In fact, to encourage this is nothing short of reckless and exposes the risk of flu, or worse – pneumonia.
The Government have now launched a pilot scheme, yet after almost nine long months of waiting it is only available to twenty care homes in Devon, Cornwall and Hampshire. The majority of the other 15,980 care homes continue to enforce blanket bans on visiting and families have reached breaking point. The pilot will take at least four weeks to complete and then there will be a further period of evaluation.
The DHSC have also stated that “Any decision on rolling out care home testing nationally will be taken in light of the latest available data on transmission rates as a result of Covid 19 restrictions” and many relatives fear they will never see their loved ones again. Unable to influence the general public, all we can do is ensure that we are leading a responsible lifestyle, and this statement gives little hope of a speedy reunion.
Despite all the obstacles that have been put in the way of Care providers – a few are already allowing safe visits. If the Government really cared about the most vulnerable in our society they could very quickly learn and share good practice from these initiatives and produce a Covid-safe visiting protocol. There is absolutely no need for a pilot scheme, which will delay the resumption of visits further and lead to more deaths from loneliness and isolation.
Many have stopped eating and drinking as they exercise the only liberty left to them and choose to give up the will to live. Relatives too are suffering mental health issues – many for the first time in their lives – as they witness the terrible decline of their loved one and feel powerless to help them. The guilt is horrendous and the sleepless nights are taking their toll. The impact on the well being of over 400,000 families of those living in care settings is immense and becoming more critical every day.
People have been driven beyond despair and recently a trained nurse tried to remove her mother from a care home to be looked after at home. She made this decision purely on instinct so that she could hug her, talk to her, have human contact and spend quality time with her. She did this without seeking permission but it was not a premeditated act and the resulted in her being arrested. Her mum was forcibly taken back to the care home, while her distressed granddaughter filmed the upsetting and traumatic turn of events. This incident shows just how desperate families are becoming.
The Government are playing Russian Roulette with the lives of our loved ones and so far have failed to apply compassion or urgency in finding a solution.
A group of infection control experts wrote an open letter in the Nursing Times stating that infection control should not be a barrier “but an enabler to compassionate care” and recommended the urgent resumption of visits. A recent Sage report also stated that there is a “low risk” of the virus being taken into a care home by a visitor and testing visitors is a mitigation option. The Sage report goes on to say that the substantial social and emotional impact on residents is moderate to high. However the Government continues to ignore these experts and residents and their families are paying the price.
Today I was asked by a journalist how important would it be to us all if we could see our loved ones this Christmas. My response was that many won’t make it to Christmas – we need urgent action right now!!
What’s next for Rights for Residents
As we continue to fight for the right to see our loved ones, our campaigning actions are paying off. Forty MP’s from across the political spectrum have now agreed to work collectively on this issue. Recently a debate took place in Parliament on the subject of care home visits which was quickly followed by another debate in Westminster Hall about the impact of Covid-19 on those living with Dementia.
An open letter from the NCF to the Government, calling for an end to blanket bans on care home visits has now been signed by a coalition of 130 organisations including Rights for Residents. Our regular campaigns with The Daily Mail, The Daily Express and Daily Telegraph are building momentum and when lock down is over we are planning a socially distanced protest.
We have also released a record ‘Right here waiting for you’, featuring images of those currently imprisoned and suffering immensely as a result of these inhumane visiting restrictions. George Gallagher a professional singer from Liverpool has very kindly donated his time and voice to our Rights for Residents campaign in the hope we will be heard.
Our campaign video speaks volumes as it features those directly affected by the lack of meaningful contact with their families.
We have now also released a record sung by a professional singer George Gallagher to the cover ‘Right here waiting for you’.
Mum and Dad have been married for 61 years. They’d hardly spent a night apart in all that time but when Mum’s Alzheimers progressed earlier this year, he could no longer look after her in their own home as she needed full-time care.
Once mum moved into a care home, Dad would travel each day to see her. Even after the Covid virus hit, he would still go and see his beloved wife through the window of her Home. Dad thought that visiting mum at the window like this would just be temporary but months later nothing’s changed and there’s no end in sight.
Mum is well cared for in her home but her face lights up when she knows that Dad is coming. However, mum doesn’t recognise dad with a mask on and she can’t hear him through the window and so these restricted visits are stressful for them both.
Dad wants to dance with Mum like they used to do. He’d put her favourite songs on and they would dance together in the lounge of the care home. He desperately wants to do that again. He desperately wants to hold her and tell her how much he loves her.
Dad’s health is not great. He has an underlying heart condition. He’s 86 years old and is now pining for his wife. He struggles to eat and sleep and is missing her so much it pains him. It pains the rest of us to watch him decline. They need to be with each other. Why can’t they dance together again before it’s too late?
This is Maggie, she lives in a care home and has multiple sclerosis. Unlike like many of those living in care settings she is able to give voice to her opinions and feelings. Maggie misses her children and grandchildren immensely and feels very lonely.
Before she was locked up indefinitely, she had a personal assistant who used to take her out to coffee shops, the theatre, etc and now she is trapped like a prisoner in her room – but Maggie has committed no crime.
Leeds has just gone into local lockdown and we’ve received a text from the care home to say all visits, including window visits have been banned with immediate effect. It’s all absolutely heartbreaking.
Read more about her story here.
A day out.
I cannot visit or see my mum at the moment. She is 99 and has been in lock down since March and has not been out of her care home (apart from an admission to hospital)
Yesterday l was asked to take her to hospital for a check up! l drove via a park. She loved seeing the autumn trees, conkers, squirrels and the children playing. It was the same park she got engaged in 77 years ago.
At the hospital she was told she would have another check up in a year. She said
“Oh can’t l come next month l need another day out!”
I drove back to the home via my daughter’s house. Two granddaughters 5 great grandchildren lined the pavement so they could see her. They waved, cried and blew kisses!
“I feel like the queen’ mum said “and today will be a memory that l will treasure forever because they won’t let me out again”
In six months time she will be 100 – we wonder how we are going to celebrate?
They say they are keeping her safe from the virus, but then ask homes to take patients with the virus. I cannot see her and yet I’m asked to take her to hospital. I cannot go in the home, but hairdressers, plumbers, carpet fitters, chiropodist and lift repair men can!!
What about Mum’s mental health? She is sad, lonely and depressed. Mum says life is not worth as there’s not quality of life and the only way she’ll get out again is in a box!