What the six principles for engaging people and communities mean for me | Mandy Rudczenko

Mandy Rudczenko

Carers and citizens shouldn’t have to sit on NHS boards and committees to feel valued, writes patient involvement advocate Mandy Rudczenko.

The day before I was due to go back to work as an adult education tutor trainer, I got a call from the hospital asking us to go in urgently the next day.

The next day, my son was diagnosed with Cystic Fibrosis. We were told the life expectancy is 40. I gave up my career to become his carer. 

Over the next 15 years, I lost and gained skills. Trouble is, the skills I gained were not valued by society – the ones I lost were.

I spent the next ten years feeling invisible, undervalued, not part of society. I tried twice to work part-time on a permanent contract. It didn’t work. I had to take so much time off for my son, my employer was having none of it – and I didn’t have the energy to take them to an industrial tribunal. I now work on a casual basis. It suits me, but I don’t have any financial security. 

Three years ago, I was feeling dissatisfied with the working relationship with my son’s medical team, but I assumed it was my fault. I now know that my intuition was right. The traditional patriarchal approach to my son’s care wasn’t working for us. Having discovered health coaching and person-centred care, I now know that it is possible to have a more positive, equal working partnership.

So what has all of this got to do with the Six principles? Everything. If someone had told me two years ago that I would be on a board, co-designing a document which aims to change the future of health and community engagement, I would not have believed them. 

To me, the Six principles for engaging people and communities represent hope, self-esteem, equality and justice. Everyone should know about these principles, in the same way that everyone should know that discrimination is wrong. 

I cannot bear the thought of having to carry on dealing with an NHS which doesn’t use these principles. Person-centred care (the first one) means we can manage my son’s long-term condition with confidence and freedom. 

Being involved in creating and evaluating services (the second principle) means that we receive services that result in my son having a better quality of life, rather than services that satisfy bureaucratic targets. 

Ensuring equality of health (third principle) means that, if faced with lack of employability, my son has a safety net. 

The involvement and support of carers (fourth principle) means I get the support I need to stop me from developing a long-term condition (such as depression). 

The valuing of community initiatives (fifth principle) means that my son will be able to access services outside of the NHS. Recognition of the importance of volunteering and social action (sixth principle) means that my son will be able to turn to community activities.

Being involved in writing the six principles has made me feel part of society again, valued and competent. But that’s the problem. Carers and citizens shouldn’t have to sit on NHS boards and committees to feel valued; that’s the point of the Six principles.

Mandy Rudczenko is a former mental health nurse and tutor. Mandy now campaigns for patient and citizen involvement in healthcare. She is a member of the Five Year Forward View People and Communities Board, the Coalition for Collaborative Care, and NHS England's Patient and Public Participation Oversight Group. Follow her on Twitter @MandyZenko

Find out more

The latest publications from the People and Communities Board provide an introduction to putting the principles into practice, offers case study examples of where it has been done well, and suggests indicators and measures of success.

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