Rights for Care Home Residents

Since the UK first went into lockdown in March, the one group in society who have remained cut off from face to face contact with their loved ones is older and disabled people living in care homes. The impact of this has been devastating.

Leeds Older People's Forum and Age Proud Leeds stand in solidarity with the Rights for Residents campaign and our partners within Leeds City Council and Alzheimer’s Society in seeking changes to the restrictions on visits to care homes.

Earlier this year Healthwatch Leeds published a report on the impact that lockdown is having on the emotional wellbeing of care home residents - “Covid might not kill them ...but loneliness possibly will” , contains personal accounts from relatives of people living in care homes in Leeds:

My mum cries every day. Her paranoia has increased and her Alzheimer’s has deteriorated. She has forgotten people now and is forgetting conversations and little things that she knew how to do before…In four years we have seen or talked to each other every day, so has affected both of us.” (relative)

The family’s anxiety about not being able to keep an eye on mum is intolerable. The agreement that our mother went into care was that we would visit every day. We have kept this promise until the lockdown” (relative)

Earlier this year, leading dementia-support organisations wrote to the Secretary of State about the extraordinary and deeply distressing way in which families remain officially separated if one member lives in a care home, stating how:

  • Family carers are key, essential members of the residents’ care and support network
  • They not only provide practical services that contribute directly to their family member’s well-being, but also act as their advocates, voice and memory, keeping them connected to the world.
  • We have heard countless stories of the anguish that both the residents (who may feel bewildered and abandoned) and their anxious family carers have experienced
  • Without these essential family carers, the cognitive abilities of a person with dementia can deteriorate rapidly, and this enforced isolation from family and friends can be fatal.
  • The sharp spike in deaths in care homes since the pandemic began is not just caused by the virus; there has also been a rise, 52%, in non-coronavirus-related deaths for people with dementia.

Further to this many residents are experiencing the added trauma of being isolated in their rooms as part of care homes’ infection control measures.

As cases of coronavirus continue to rise in the UK and restrictions are tightened in many areas, the Rights For Residents campaign seeks to end the current inhumane restrictions. This BBC article about the relatives and residents behind the campaign, features Maggie, who lives in a care home in Leeds, who states:

Life is not worth living really...I don’t really want protecting thank you very much

Maggie Web
Maggie

Rights for Residents is 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 impact of being cut off from loved ones, by:

  • Granting key worker status to relatives, with access to the same testing regime as care staff and regular indoor visits
  • Ending the unfair restriction that limits visits to the same nominated family member and the 30 minute time limit
  • Producing a policy that protects people living in care settings from premature deaths due to loneliness and isolation

A petition – Please let me see my family.. - has been launched, which has over 150,000 signatures at the time of writing.

We at Dementia Friendly Leeds are launching a call to action to our partners and supporters across the city to sign the petition and show support for the campaign.

Leeds City Council, in a letter sent to the government in September around local Covid restrictions, asked for "An easing on care home visits so one family member - who is regularly tested - can visit relatives".

Alzheimer’s Society recently published Worst hit: Dementia During Coronavirus which reports the catastrophic impact coronavirus has had on the 850,000 people living with dementia. Alzheimer’s Society is urging the government to recognise the key role that informal carers play in the lives of people living with dementia by “allowing at least one informal carer per care home resident to be a designated key worker and have access to training, COVID-19 testing/vaccinations and PPE”.

Sarah Prescott, Communities Officer, Time to Shine

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