During the surreal spring of 2020 one major supermarket briefly played ‘You’ll Never Walk Alone’ on a loop. A competing store is still asking staff to dress in t-shirts proclaiming: ‘We’re all in this together’.
However, as so often happens in a crisis, neither sentiment rang particularly true for those worst affected in our society.
Independent advocates taking part in a survey coordinated by The National Development Team for Independence, together with advocacy organisations, suggested that the rights of thousands of disabled people, people who use social care and people who live in care homes may have been unlawfully breached during those early months of the pandemic.
Advocates play a vital role in supporting people to have a voice, access support services, challenge decisions about their liberty and be safe from abuse.
Advocacy providers and those who work for them recognise the uniquely challenging pressures that staff in local authorities and social care providers faced during the spring, and the tremendous efforts made to support people. It is however vital that we learn and apply the lessons from our experience during that time.
Our survey of 435 advocates in England and Wales found:
- 76% of advocates said people’s human rights were not being fully upheld.
- People who find it difficult to communicate or who already face discrimination have been hardest hit.
- Nearly half of advocates have seen people in care homes confined to their rooms or not let outdoors at all.
- One in five advocates have seen people in care homes subjected to potentially unlawful decisions to withhold medical care and treatment if they get ill, without individual consideration, proper consent or protections.
- Some 31% had seen unlawful blanket use of ‘do not attempt resuscitation’ notices.
Referrals to advocacy services fell significantly during the spring – and the Care Quality Commission (CQC) has raised concerns about a dramatic fall in the number of applications by providers for Deprivation of Liberty Safeguards.
A frequent failure to implement the Mental Capacity Act meant the wishes of many people lacking mental capacity were not listened to and their best interests were not considered in treatment decisions.
Many providers responded magnificently to new situations and some local authorities pulled out all the stops to adapt. However, we cannot ignore the reports from people using services, carers and advocates that they experienced support falling away.
Some advocates told us that in the first months of the pandemic it felt like local authority staff believed legal obligations around referrals to advocacy had been suspended. Others encountered council staff who erroneously believed Care Act easements were in place locally – and therefore it was no longer necessary to undertake assessments or plan and deliver care in the same ways as before.
As the nation grapples with the rapid resurgence of coronavirus we must apply lessons from the spring. Just as the medical response is evolving, so must the response from those commissioning, arranging and providing social and health care.
We want local authorities to make sure social care providers understand that the legal obligations to refer to advocacy services remain fully in place. Government guidance published just last week emphasised again that face-to-face visits in care homes and other settings should continue if they are needed. For example, if this is the only way to meet the person’s specific communication needs or if there are concerns about the person’s human rights.
Similarly, despite the unprecedented pressures, council staff and those providing services are still required to provide support that people are assessed as needing.
The pandemic has shone a light on the way we support people who use social care and people who live in care homes. We need a new public and political consensus about the society we want to live in and how we will care for each other when we need support.
We need a new vision for social care, emphasising more individualised and community-based support, which strives to enable people to live where, with whom and how they choose. This will take investment, but equally will require a change of mindset, away from more institutional provision. More than anything, we need to break the cycle that means people who need the most support are also the most likely to have their voices ignored. That way, when we look back on 2020, we may be able to say that was the time when we truly resolved that nobody would walk alone.
Jonathan Senker is chief executive at VoiceAbility