Personalised care is to be business as usual from 2024 but is the centralised drive for change really capturing the cultural shift required?

When there is still debate amongst practitioners about the challenges of using a parent’s name, how can the wider-reaching scope of personalised care be expected to be embedded?

The hallmark of good service

Co-production and personalised care is at the heart of legislation from the top down. It is being integrated into Key Performance Indicators (KPIs) across the board. The government, CQC and NHS England all promote co-production and personalised care – working with, rather than simply for individuals as a hallmark of good service and provision. I’m passionate about collaboration, co-production and effective communication but I’m worried the widening gap between rhetoric and reality mean this is another aspiration which fuels frustration and worsening morale for parents and professionals alike.

The inability of true co-production

Despite the principles of personalised care being embedded in the fabric of legislation and policy, a structure and strategy of power and powerlessness continues to perpetuate the inability for true co-production. The default alpha male leadership model prizes output over outcome (for services over needs and lived experience). The NHS remains a system which gives voice and power to the people most detached from those walking through their doors out of necessity. Budgets and objective outcomes will continue to win over people and their lived experience – despite a concerted effort (at least in public) to change.

As the parent of a child with complex disabilities, every single day, I feel drawn to fight, stand my ground and pick up the rope for my daily round of tug of war. The disparity between policy and lived experience catalyses a parent’s need to shout louder, argue harder and demand for the rights of their child.

There is a deepening frustration experienced daily by those with disabilities who live straightjacketed in a world which promises opportunities, but delivers hurdles.

As pioneer of the ‘Don’t call me Mum’ initiative, I believe Personalised Care starts with simple steps such as using a person’s or parent’s name. We’ve started the conversation with “Hello, my name is…” But if that is where it stops, we are adding fuel to the fire of perpetual disempowerment for people using health and social care services.

In a sea of jargon and policies which compound a sense of powerlessness, asking and using a person’s or parent’s preferred name helps them feel seen. Such a small step can halt a pendulum swing of traditionalist professionalism which promotes dehumanisation and isolates both practitioners and families. Building trust, nurturing hope, understanding a person’s priorities, perspectives and needs might feel insurmountable but can also start with the simple step of using a person’s name.

Rachel Wright is a qualified nurse and unqualified mum of 3, parenting a son with complex disabilities. She’s the author of The Skies I’m Under, host of The Skies We’re Under Podcast, an award-winning blogger and founder of Born at the Right Time. Passionate about effective communication and collaborative working, she uses her skills and lived experience to influence change, educate practitioners with CPD-certified courses and support families.

She is devoted to salt ‘n vinegar crisps and her middle son is writing a book titled, “My mum’s epic fails’. It is likely to have more than one volume.

The Skies We're Under Podcast

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