Leading dementia organisations call on government for urgent action to maintain essential relationships of care home residents

Family and friends of loved ones in care homes remain unable to visit

Twenty months after the start of the pandemic, the charities and organisations that come together as One Dementia Voice strongly and unanimously believe that the rights and needs of some people living in care homes are being ignored in policy and practice.

The pandemic has brought this issue into sharp focus, and the need to enshrine the rights for care-home residents and their families has never been more pressing.  

We call on the government to uphold the rights of residents so that they are able to live in respect and dignity maintaining essential relationships with those they love.

We believe this to be essential not only to support families and residents but also to help a sector that has been exposed to a lack of clarity in policy terms throughout COVID-19.

As the rest of the country returns to normal, the lives of too many care home residents remain severely restricted without due consultation or consent. Meaningful contact with loved ones can still too often be left to chance and the degree of variation in the process is completely unacceptable. 

We have heard varying accounts when it comes to access, such as a thirty-minute visit once a week right through to some residents without having access to family and friends at all.

Carers rights are not consistently upheld in relation to essential caregiver status as set out in government guidance. As a group of dementia specialists we cannot sufficiently stress how damaging this is. Maintaining close, meaningful contact even at the end of life isn’t always guaranteed. This can leave a permanent and damaging legacy to those who live on.

Government guidance has not been effective in protecting those who live in care homes. While many owners and managers have behaved with compassion and wisdom throughout the pandemic, balancing the risk of COVID-19 against the very real suffering and harm done by isolation, others have struggled to do the same. 

Lifelong bonds of relationship and affection have been torn, and the curtailment of basic liberties is at risk of becoming normalised.

The devastating effect of the pandemic has shone a light on what was already a crisis in the making. The people who live in care homes are our fellow-citizens and we insist that the government should take responsibility for protecting their fundamental rights and well-being.

Basic human rights should never be ignored, including the right to liberty, the right to private life, the right to family life, the right to be free from discrimination. 

The Health and Social Care Act makes it mandatory for a resident of a care home to have access to medical care and a choice of food, but it does not make it mandatory to facilitate and support the maintenance of essential relationships.

It is both simple and urgently necessary to correct this glaring omission and ensure that people’s most profound and personal life choices are respected.

We are calling for the maintenance of essential relationships according to individual choice to be supported as a statutory aspect of person-centred care as recommended in May by the Joint Committee of Human Rights.

We are aware that the Chairman of that committee has written to the Minister for Care on this subject and we look forward to her positive response and swift action. The average stay of an older person in a nursing or care home is just two years and time is running out for them.

Signed by One Dementia Voice,


Nicci Gerrard and Julia Jones, John’s Campaign

and

Jacqui Cannon, Lewy Body Society

Seb Crutch, Rare Dementia Support

Ruth Eley, TIDE

Tessa Gutteridge, Young Dementia Network

Philly Hare, Innovations in Dementia

Hilda Hayo, Dementia UK

Kate Lee, Alzheimer’s Society