Written evidence from Anonymous (HCS0059)

What human rights issues need to be addressed in care settings, beyond the immediate concerns arising from the Covid-19 pandemic? 

• Individualisation – needs of all the residents in care setting cannot be generalised.  The introduction of virtual meetings via Zoom / Facetime during Lockdown 1.0 may have been suitable for some residents, but for my wife, who had Advanced Vascular Dementia, this was distressing for her and us.  She could hear our voices, but did not have the visual skills or ability to visually attend to enable her to look at the screen and to see us.  She would look around the room for us. 

• Safe – whilst measures were taken to ensure all residents were as safe as possible, it was not possible to prevent a spread of infection when one resident had tested Covid positive.  Staff did not have sufficient PPE at the start, and the ratio of staff:residents was insufficient, meaning that staff had to go from room to room, and were not always able to stay for long enough with any given resident.  This impacted on hydration and feeding. 

• Right to life – there were times when this was compromised for my wife, especially when admitted to hospital during the pandemic with pneumonia.  The communication between the hospital medics and the family was poor, despite having a nominated visitor.  Important aspects such as Palliative Care and End of Life Planning was needed, but it was very difficult to have a comprehensive plan, due to staff shortages and lack of communication between Medics / family / care home staff.

• Admissions to hospital – my wife was admitted to hospital several times when she was a resident in a care home, for prolonged seizures, choking and pneumonia.  A seizure lasting more than 3 minutes warranted an ambulance call, which invariably meant a hospital admission.  This was against our wishes at the end of her life, with POA in place, however it followed the care home’s policy.  Often this meant that she travelled by ambulance without family and wasn’t able to be accompanied by care home staff due to staffing issues.  When she was not non-ambulatory, this was less of a risk.  However when she was able to walk, and had been left in A&E alone, this was extremely distressing for her and the family.  We felt staff from care home should have accompanied my wife, until the family could take over. 

• Treatment in hospital – as my wife was young (59 when diagnosed), nursing staff and Healthcare Assistants often did not know she had dementia, especially if she was in A&E or MAU, rather than a neurological ward.  This caused issue when the family tried to visit, or assist at mealtimes.  Family were asked to leave due to ‘Protected Mealtimes’ yet she had no way of feeding herself or picking up her glass of water, and there was insufficient staffing on the ward to assist her. 

Supervision was poor, and she regularly pulled out her cannula, and she locked herself in the ward bathroom and was found cradling a toilet brush like a baby on one occasion. 

How effective are providers at respecting the human rights of people under their care? 

• Well led – management did keep family members informed as much as possible.
• Caring – the staff team were incredibly caring, however they were often burnt out and overworked and tired.
• There is respect for the residents, however many logistical and strategic issues preventing this from happening consistently. 

How effective are regulators in protecting residents from human rights breaches and in supporting patients and residents who make complaints about their care provider? 

• This did not apply for us as a family, as we did not involve CQC.  We did raise concerns to management within the care home, which was acted upon. 

What lessons need to be learned from the pandemic to prevent breaches of human rights legislation in the future? 

• The importance of touch was overlooked during the pandemic.  Tactile input was the main form of communication between my wife and the family.  When she became non-verbal, massage and holding her hand and ‘assisted yoga stretches’ whilst in her wheelchair was vital.  The 2m social distancing rule, whilst necessary, prevented all of this.  My wife could not visually locate us, nor could she recognise us.  It was very difficult watching care staff able to touch her and comfort her, when we weren’t permitted to do so.   
• The isolation and impact on family as well as residents when no visits were permitted.  Whist we were "locked out", I can only imagine what she must have been feeling not seeing me and her family and friends. I was prevented from seeing her.

01/04/2022