A diagnosis of kidney disease can have a big impact on every part of a person’s life.
The Transforming Participation in Chronic Kidney Disease programme is about people with chronic kidney disease (CKD) working closely with their renal team and others so that together they can learn how best to live life to the full by developing their knowledge, skills and confidence.
Since 2014 we have developed partnerships with 14 renal teams from across the country, working to put patients at the heart of their care with the aim of transforming the way people are involved in their own care.
Vision for the programme
The programme’s vision was to help people living with CKD by supporting them to develop their knowledge and skills, to gain the confidence to work with their health care team to manage their condition and to help plan future services. This approach results in the right decisions being made so that the person is supported to achieve personal and clinical goals that are important in their life.
The programme supported and empowered people with CKD and their families to achieve the personal and clinical goals that are important to them, wherever they are in the pathway of care. Patients, carers and clinicians are valued and supported to develop the skills, knowledge and confidence to work together toward the best possible outcomes.
The programme was developed in line with NHS England’s person centred care principles which nurtures partnerships rather than the professional being the expert, while the patient simply follows their instructions.
This becomes a more helpful relationship in which the person and the clinical team work together to:
- understand what is important to the person
- make decisions about their care and treatment
- identify and achieve their personal goals
Why person centred care?
Not only do we believe it is the right thing to do from any person’s perspective, but we also know that supporting people to gain the knowledge, skills and confidence to be more involved in managing their health can have a direct impact by improving people’s sense of wellbeing, control in their life and their clinical outcomes.
People become better equipped to choose treatments that are most suitable for them as individuals and engage with health care teams about their challenges in a more positive way. The added bonus of this approach is that as people become more engaged staff morale improves too. Why wouldn’t we do it?
Visit the Health Foundation for more information on Person Centred Care.
What the programme achieved
The programme aimed to answer 3 questions:
1.Is it possible to routinely measure a patient’s level of knowledge, skill and confidence (their activation), quality of life and experience of healthcare using data collection methods?
In other words – can we measure, using data collection methods and asking questions, the impact that having knowledge, skill and confidence about your condition makes life better?
2. Does a patient with a high level of knowledge, skill and confidence have better personal reported health and experience outcomes than someone who does not?
Or, does having knowledge, skills and confidence improve life?
3. To what extent do various interventions such as peer support, supported self- management programmes, one to one support and coaching improve a patient’s level of knowledge, skill and confidence to manage their own kidney health needs?
Or, what can health care teams do to encourage people to develop the knowledge, skills and confidence to be involved in decisions about their care?
Central to the aims of the TP-CKD programme was finding ways to empower patients and health care professionals to create new ways of working which support patients to take greater control of their health and wellbeing, greater involvement as equals in the design and delivery of new services and to achieve the personal and clinical goals that are important to them.
Whilst a number of tools to support this person-centred approach to care were identified by patients and clinicians on the TP-CKD Interventions work-stream, their effectiveness and feasibility (question 3) was not assessed as part of the TP-CKD programme.
Information on the next phase of the programme, TP2, is here.
You can sign up and register on any page on the website to be regularly kept informed about programme progress.
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