Written evidence from The Policy Institute at King’s King’s College London; Nightingale Hammerson care home residents (HCS0057)
Document prepared by Dr Caroline Green, King’s College London, NIHR ARC South London, on behalf of a group of 10 care home residents living in a care home for people aged 65 years and older.
We welcome the opportunity to submit our answers to questions 1 and 4 after the formal deadline for submission of evidence to this inquiry. A group of care home residents came together to discuss your questions under the inquiry with Dr Caroline Green, who in the text below has captured some of the broad themes that were touched on:
Question 1: What human rights need to be addressed in care settings in England, beyond the immediate concerns arising from the Covid-19 pandemic.
Safety over freedom and choice: The safety of care home residents is of course the paramount consideration of care professionals. However, there are situations in which a better balance could and must be struck between residents’ safety and personal freedom and choice, especially inside the care home premises like gardens.
Privacy and family life in the care home: The relationships care home residents have with their families and friends who live outside the care home are important. But what is also an important human rights consideration are relationships and privacy considerations inside the care homes. For example, if couples live together in a care home there must be an individualised plan for this couple to spend time together in private, even if one or both of them have some level of cognitive impairment. It is good practice for the care home to work with couples to understand their needs and concerns in order to ensure that their privacy and right to family life is maintained. People with dementia or other cognitive impairment have rights to privacy and confidentiality. We have good legislation in the form of the Mental Capacity Act to safeguard the rights of people to make decisions over their own lives as much as possible and it is important to make sure that care professionals and people with cognitive impairment as well as their families get the support to put it into practice.
Access to information: Care home residents do have a right to education and to access information, especially on human rights related matters. This includes being informed on the Mental Capacity Cct and human rights related matters.
Access to technology: Access to technology, including a mobile phone/easy access to a personal phone, the internet and a laptop (as well as easy maintenance support) supports residents to stay in touch with family, friends as well as making new connections, learning about new topics and participating in social and political life.
Every care home resident has their own story how they came to live in a care home. Moving into a care home is a big transition in life, which is made easier with care professionals and families who understand this and who support residents to have a good life in this new phase. A major human rights consideration is therefore the culture of a care home, in which the staff are also open to listening to residents and learning – human rights really are about respectful and positive relationships inside care homes.
Question 4: What lessons need to be learned from the pandemic to prevent breaches of human rights legislation in the future?
The pandemic was and still is an extraordinary situation and about survival. Restrictions were often frustrating, but there was a broad understanding that this was for health safety reasons. Human rights in care settings were an important matter before the pandemic and in many ways, the pandemic has highlighted this.
What must be learned from the pandemic is therefore that all human rights matter to people living in care homes and that more must be done together to understand good practice in making them happen. Care home residents can and must be involved in this process directly because we have the lived experience. There are many ways to communicate well with people with cognitive impairment too so no one must be excluded from these conversations. Rather people must be supported to have their voices heard in a way that works well for them. We would appreciate a resident led charter of rights that helps to understand what human rights mean in practice in care settings, what tools we already have to help us in this way and what we need to do more of.