Video footage of a retired nurse being arrested after she removed her mother from a care home, the day before England’s lockdown, has sent shockwaves across the country and beyond. The family describe acting in desperation, after watching their 97 year old mother and grandmother deteriorate over 9 months of isolation in care. Having raised their concerns with the care home, their MP, the local authority, including raising a safeguarding concern, they say their voice was “lost in a labyrinth of bureaucracy”. The problem is with the visiting guidelines “purporting to be in place to ‘protect’ but yet are causing untold damage to physical and mental health”.
This is a heart-breaking, desperate situation. Sadly, these are sentiments we hear often on the R&RA Helpline. Throughout the pandemic we have been supporting families through the anxiety, stress and anguish of being separated from their relative in care. Helpline callers who have watched through the video screen or window as their relative’s condition deteriorates. Callers who are worried about their relative’s mental or physical health getting worse as they are not there to support them to eat, take medication or relieve their distress. Callers who know their relative best but can no longer act as their advocate.
Many family members have called our helpline to discuss the options and implications of moving a relative from care, due to fears about the impact of the virus and restrictions to manage it. This is not an easy decision for families to make. Our helpline not only provides them with information about the law, but helps them to explore the practical, financial and other considerations. There is no ‘one size fits all’ answer to these questions. Because at the heart of all these stories is a person. A person with care needs. Everyone’s needs are different – as are the circumstances of their families – so these questions require an individual approach to help find an answer that works best for that person.
The starting point should always be a person’s autonomy. Everyone has a right to make decisions about their own life (protected by the right to private life, Article 8 in the Human Rights Act). This is crucial, especially for a decision as important as where a person lives. People’s capacity to make decisions for themselves should be assumed, as enshrined at the outset of the Mental Capacity Act, as principle one. If a person with capacity decides they would like to leave a place they are receiving their care, legally there is nothing to stop them (although, the legal regulations imposing lockdown mean we can currently only leave our homes for specific purposes – the exception for respite could potentially cover this kind of situation).
For people living in care homes subject to a Deprivation of Liberty authorisation (or ‘DOLS’), this is a legal safeguard to protect their rights where they lack capacity to consent to care and it is in their best interests not to leave the care home. This must have followed a process of a ‘mental capacity assessment’, a ‘best interests assessment’ (involving the person as much as possible as well as their family/friends/carers/a Power of Attorney) deciding that it is best for them to live in the care home and not to be able to leave in order to protect them from harm, and that this is the least restrictive option. Someone will be appointed to represent the person’s interests and support them with anything relating to the DOLS, called a Relevant Person’s Representative (or RPR).
Where a relative/friend thinks it is no longer in the person’s best interests to stay at the care home, they should discuss this with the care home and can request the local authority review the DOLS. For example, if they have concerns that isolation as a result of visiting restrictions is having a detrimental impact on the person’s mental or physical well-being. The appointed RPR can apply for a review of the DOLS and can apply to the Court of Protection to challenge the DOLS on the person’s behalf if necessary. Our helpline can support people through these discussions with the care home/local authority.
There are many practical implications to work through when considering a move out of care. Primarily, how the person’s care needs can be met. This includes any health needs, including administration of medication, personal care needs such as toileting and bathing, dietary needs, and any support required with mobility.
Following from this, whether the place the person moves to is accessible and appropriate for their needs, particularly if they have mobility issues. The person many need specialist equipment, for example to help them access the bathroom or a specialist mattress to prevent pressure sores. This would have to be arranged through the Occupational Service of the local authority, NHS or privately. Given the specialist nature of this equipment, professional advice is recommended.
Another key consideration is the practicalities for relatives/friends who will no doubt take on some, if not all, of the caring responsibilities. This includes the impact on their own health, particularly if they will need to support the person with mobility and any lifting.
Another important consideration is the effect of the move itself. For some older people moving between settings can have a significant impact on their physical and mental health. This is particularly the case for people with conditions like dementia who may be disorientated by a change in surroundings and carers. Even if the person is returning to a place they used to live previously with family members, they may no longer recognise or remember it. If the person then moves back into a care home at some point in the future, this further change is another consideration.
For people relying, even in part, on local authority funding for their care, there may be financial considerations of moving too. If the person will need additional support from beyond the family, then this package will need to be agreed with the local authority under the regulations of the Care Act prior to moving the person out. If the person needs to go back into care at some point, our helpline callers have been concerned that moving in haste, without involving the local authority in the decision, may make it trickier for them to get back into the system in future. Certainly, for all but emergency placements, the person would need to be reassessed and the care placement agreed, again under the regulations set out in the Care Act.
For self-funders the decision to move out of care may be simpler, although in either case there will usually be a notice period needed to rescind the contract. Anyone considering moving out of care should speak to their local authority about the options for an alternative care package at home, and discuss how this might be funded. Again, our helpline can support people through these discussions with the local authority.
Some of these considerations won’t be relevant where a person is nearing the end of their life and may want to move to a relative/friend’s house to die. Although current visiting guidance still allows for visits at the end of life, often these visits come too close to the end of life to be meaningful. Many callers to our helpline are concerned about their relatives having a good death, surrounded by friends and family. Again, these types of moves should be discussed with the care home and the local authority, and can ultimately be taken to court if necessary. The Court of Protection ruled earlier this year that a woman with terminal cancer under a Deprivation of Liberty authorisation should be allowed to move to her daughter’s home to die. Again, our helpline can support people through these discussions.
Care staff have been working under incredibly challenging circumstances throughout the pandemic and continue to be undervalued and underpaid. The homes they work in are volatile and fragile, with huge staff turnover, and the effects of the pandemic have added additional stresses and staff absences. This means that oversight is needed now more than ever.
Yet, the lockdown of care homes has not only led to lack of contact with relatives and friends, but also with professionals and organisations who play a vital role in ensuring residents receive good quality care. Where safeguarding teams and the regulator – the Care Quality Commission – conduct inquiries and inspections virtually, this has led to lack of faith in these systems. Older people in care need robust and trusted systems to ensure their rights can be protected, and access to their friends and family to provide advocacy and oversight. We need to End Isolation In Care and reconnect older people with these vital support networks.