AGNI: A care system perspective

Helen Wildbore is CEO of Care Rights UK, the charity focused on promoting the rights of older people who need care.

At Care Rights UK, we’ve been running the national adviceline for older people needing care for over 30 years. A key theme in our advice work is people being prevented from leaving the place they receive their care, such as a care home, or having other restrictions placed on their movement. Until recently, there was a clear test for whether this interference with rights was lawful. If someone was under constant supervision and control and not free to leave their care setting, this was recognised as a restriction on their right to liberty. Safeguards would need to be applied to ensure this restriction was appropriate, known as the Deprivation of Liberty Safeguards (or DOLS). Whilst this system was far from perfect (due to delays, backlogs, and ineffective use), it was at least clear when a DOLS was needed and there was a process people could use to challenge poor practice, which had legal teeth.

That all changed in June this year. In the ‘AGNI’ case, the Supreme Court overruled this test, ending the clarity of knowing who should be protected by DOLS. The court has changed the test for a deprivation of liberty and permitted care providers to infer the consent of a person to their care arrangement from their behaviour, even if they lack the ‘mental capacity’ to consent. In effect, the court created a new category of people who are now outside the protection of the deprivation of liberty safeguards: people who are assessed as not having the capacity to consent to their care arrangements but can be deemed to be consenting (so-called ‘incapacitous consent’).

The implications of this judgment are deeply concerning for the people we are supporting. The very week the Supreme Court judgment was handed down, we were supporting a family whose older relative, Valerie (name changed to protect anonymity), had been objecting to her move into a care home. Valerie moved in for respite care but then found herself being made a permanent resident. In response to Valerie objecting to being there and wanting to go home, she was placed on anti-anxiety medication that her family say left her dulled and withdrawn. Valerie stopped asking to go home and she was later assessed as not requiring a DOLS as she was taken to be consenting to being there. But the family felt that no consideration was given to the impact of the medication on her change in behaviour.

Prior to the Supreme Court decision, a DOLS authorisation would have been necessary to ensure this restriction on Valerie’s right to liberty was appropriate and lawful. Now, Valerie is deemed to have consented to the arrangement and is no longer protected by DOLS. So, what does this mean in practical terms for people like Valerie?

A consistent theme on our adviceline is the power imbalance in care settings. People drawing on care services can feel in a vulnerable situation, unable to speak out about what they want and their choices. The judgment has deepened this power imbalance by giving care providers the ability to choose who in their care is deemed to be consenting to their care placement through a vague set of factors. In doing so, they remove people like Valerie from the protection of DOLS, putting them in a much more vulnerable situation.

The Court decision seems to put the onus on people like Valerie to object to their care placement. But would Valerie feel able to communicate an objection to the very people providing her care? Every day we hear from people too afraid to raise their voices and speak out, for fear of their situation getting worse or of reprisals, like visiting restrictions or even eviction. It raises the wider question of how people like Valerie will be protected from sedation – even if it is a side effect of other medication. Or at the very least, how would the use of sedation in situations like Valerie’s be picked up and prevent an assumption of consent?

Without the protection of DOLS, people like Valerie are much less likely to be seen by other professionals. Part of the DOLS process is an assessment by a Best Interests Assessor – someone external to the care provider to help decide what would be in the best interests of Valerie. It not only helps identify what Valerie wants but also acts as a vital system of checks and oversight on something as crucial as the right to liberty. That extra set of eyes can be invaluable to help to identify any other care concerns or risks to other rights.

Being under the protection of DOLS gives Valerie and her family a legal tool and a process to use when they need to question or challenge their care. We know from our advice work how beneficial this can be. For example, as part of the process of reviewing whether a restriction of liberty is in the best interests of Valerie, the Best Interest Assessor can impose conditions on the DOLS to ensure other rights are protected. We have seen this used to ensure people like Valerie can have access to their loved ones, overturning visiting restrictions. This process also means things should be kept under review, to determine if a deprivation of liberty is still needed or if anything has changed.

As part of the DOLS process, Valerie would be able to be represented by someone who knows her, called a Relevant Person’s Representative (or RPR). This ensures Valerie has a trusted relative or friend to play a formal part in the process of assessing the restriction on her liberty. This representative has a recognised role, a voice and even access to legal aid to challenge a deprivation of liberty. Without the protection of DOLS and an RPR to represent her, Valerie’s voice risks being lost.

The Supreme Court decision in AGNI has created a great deal of uncertainty around such a vital issue as our right to liberty. Not only because of the incredibly complicated legal reasoning which has left even the most expert commentators baffled. It has also left too much uncertainty around who will now be protected by DOLS, and a deeply concerning protection gap for people who will now be outside of these safeguards. It has taken power and voice away from the people who need them most, those in the most vulnerable of situations in our care settings. It has left older and disabled people at increased risk.

We urgently need the Government to issue guidance to ensure care and health providers, local authorities and people affected understand their rights. We are also calling for the Government to overturn the court’s creation of ‘incapacitous consent’ to ensure that everyone has the same protection of their right to liberty. For people relying on health and care services, this right becomes more important, not less.