Hard won rights of personalisation should not become another casualty of Covid-19

Kate Sibthorp, a member of the National Co-production Advisory Group writes about how Making it Real is more relevant than ever as we cope with Coronavirus

Disabled people, their families and allies have long campaigned and advocated for good personalised care and support. Think Local Act Personal (TLAP) and the National Co-Production Advisory Group (NCAG) talk about the gap between the rhetoric and reality, between the person-centred, values-based approach of the Care Act 2014 and what disabled people actually experience. Making It Real has been a catalyst for progress, inspiring and challenging us all to close that gap.

Now, the Care Act easement guidance means that Local Authorities (LAs) can temporarily stop carrying out some of their Care Act duties, although this should be a last resort. It gives LAs discretion to set their own priorities to ‘ensure the best possible care for people… during this exceptional period.’ More than ever before, those of us who access services have to trust our local councils to do the right thing. This is an incredibly difficult ask of people who live in places where services have not been up to scratch, where they don’t work in co-production with people who access their services, where they limit people’s options by over-controlling their lives. Those people are feeling very anxious and vulnerable right now.

The best LAs are rising to the current challenge by talking to people, reassuring them that their personal budgets are safe, connecting them to community groups and more. I thank those LAs and wish them well in these difficult times.

So how can Making It Real help? As LAs reduce the scope of what they do to focus on what’s absolutely essential, they must take heed of the call within the Care Act easement guidance to continue to respect the principles of personalisation and co-production embodied within the following Making it Real I statement, “I am supported to make decisions by people who see things from my point of view, with concern for what matters to me, my wellbeing and health”. 

 I’ve looked through Making it Real and identified some further I and We statements that particularly resonate with me and members of NGAG at the moment.

The We Statements talk about keeping people safe; well-informed; connected to family, friends and community; being flexible and creative; making joint decisions with people and more. You can download the list of COVID19 MiR We statemente here. (opens new window)

The I Statements talk about understanding risks; being able to access accurate information; staying connected to family, friends and community: knowing what’s happening with their personal budget and making decisions about how it’s spent; what to do if they feel poorly; being listened to and more. Yon can download the list of COVID19 MiR I statments here (opens new window)

If you work for a LA or a provider organisation, feel free to use my selection of key statements. Alternatively, why not look through Making it Real for yourself and come up with your own priorities? If you can, talk it through with people who access your services – thinking together will be much more effective.

If we don’t stay committed to the values of Making it Real, the consequences could be desperate. A very small number of services appear to have been applying blanket Do Not Resuscitate policies to groups of people in residential care without even talking to them. What does this say about how society values disabled people? As mum to a young woman with learning disabilities and autism, I’m praying that she doesn’t get the virus and land up in hospital; I don’t have the confidence that she would get access to a ventilator if she needed one. And that’s scary.

So please, use Making it Real – we need it now more than ever as our work to achieve good, person-centred care and support is not yet done.

Notes

Making it Real is a framework to support good personalised care and support for providers, commissioners and people who access services. It supports the delivery of Quality Matters, a shared commitment to improve the quality of care experienced by people accessing services and is relevant to NHS England’s Universal Personalised Care.