Meet the team: Think Kidneys, Think Peer Support
Professor of Kidney Care
London South Bank University
- England - London (South)
Kidney Care UK
- England - Wessex
- Richard Endacott Peer Supporter
- Shaila Hussain Peer Supporter
- Dr Martin Dempster Academic (Health Psychology)
- Hannah Chalmers, National Voices
People with advanced kidney disease need to make difficult decisions about the type of dialysis they will need (such as a kidney machine) or to make a decision about whether to have dialysis at all. For some people this decision will also include discussions about kidney transplantation. There are around 60000 people in the U.K. who have kidney disease that requires dialysis or a transplant. This group of people will have made these difficult decisions but then need to make significant adjustments to their life, including changes to diet and management of medicines as well as coping with the impact that dialysis or a transplant has on their life quality, such as employment, holidays and relationships with family or friends. All these adjustments are made easier if there is open communication and shared decision-making between staff and patients and their families.
However a recent Patient Reported Experience Measure (PREM) survey carried out by Kidney Care UK (with over 11000 responses) found that shared decisions about care was one of the most poorly rated aspects of the renal (kidney) service offered in the UK. The results can be found here
Some kidney units offering good emotional and psychological support from health care professionals, including counsellors. Some kidney units have invested in a programme of peer supporters who have been trained in-house whilst other kidney units and individuals have relied on the expertise and lived experience of ‘Advocacy Officers’ employed by charities such as Kidney Care UK.
Peer support in kidney care is patchy. Peer supporters with lived experience of kidney care are not being fully utilised in Trusts (Taylor 2016). Peer support offered by charities is extremely beneficial but the kidney community has not come together to learn from the charities and each other.
One of the issues seems to be around patients, families and health care practitioners not knowing what is available but crucially not understanding the beneficial impact of peer support.
The Proposed Solution
We are proposing a quality improvement project which is co-produced with a project team that includes people who have lived experience of kidney disease and are peer supporters. This team already has experience of co-producing research and QI projects (see attached file).
The team will plan the project according to the following aims and objectives:
Overall aim of project
To increase the number of people with advanced kidney disease who receive peer support. This will be done by developing and implementing an evidence-based intervention that focuses on overcoming the barriers to offering and accepting peer support.
Secondary outcome measures
To (1) develop and describe the intervention in detail, (2) check actual exposure to the intervention, and (3) describe the experience of those exposed, by undertaking a process evaluation (Hulscher et al 2003).
To convene a project team that will co-produce the project
In one Trust undertake surveys with patients and staff, and to undertake focus groups with peer supporters and clinical staff to understand the reasons for good and poor uptake
To work with the Peer Support Hub to plan an intervention that will increase the uptake (based on evidence)
To roll out and sustain the intervention in one NHS Trust
To identify the drivers and barriers to intervention roll-out and sustainability in one NHS Trust
To spread the intervention in the future (with further funding) to other kidney units and to other long-term conditions
An exciting, innovative, co-produced project that will improve our understanding of why peer support is not always taken up in one specific area of need, but has the potential to increase the uptake of peer support in many other long-term conditions.
How you can contribute
- Much work has already been done with the QLab Peer Support, and it is important to use and further evolve the learning from the QLab. We will work with the HF Peer Support Hub, who are creating a "trusted and authoritative online hub that will collate, curate and categorise the plethora of evidence and tools" on peer support.