Fourteen kidney units in England took part and almost 4,000 surveys were completed by people living with CKD. The aim was to answer the important question – how do we support and improve people’s knowledge, skills and confidence to help them manage their own health and illness? We wanted to see if it was possible to routinely collect patients’ responses to questions about their experience and outcomes of the care they receive in renal units.
The programme also looked at the link between kidney patients’ knowledge, skills and confidence and the connection this has to a person’s experience of care, and important outcomes such as their quality of life and symptoms.
Patient and carers were involved all the way through the programme – from its initial design, to developing the survey and encouraging people to take part the programme. Patients also worked in the kidney units to support local delivery of the programme. This patient involvement ensured that all the work was patient focussed and accessible.
While the report does not provide all the answers to the above question it is an excellent starting point and the results show how the level of people’s knowledge, skills and confidence about their condition has an impact on their overall quality of life. It also showed how how teams need to work in kidney units to develop their ways of working to engage patients in decisions and management of their health care. The programme’s biggest success though is, perhaps, in showing how people using the service and those delivering the service can work together for a better solution for people living with CKD.
Though the TP-CKD programme has finished a new programme called TP2 is investigating how data collected can inform practice and new ways of working within the kidney units to improve the experience of people with CKD. Information about the new programme can be seen on the 'Think Kidneys' website.
The TP-CKD was a joint programme with the UK Renal Registry (as part of the Renal Association) and NHS England.