Kidney Care UK’s Patient Advisory Group (PAG) took part in a ‘workshop in a box’ session to discuss what they thought should be included in the NHS 10-year plan for England. A full report of this discussion has been submitted to the team working with government to develop the plan, to help them understand the views and experiences of people with kidney disease.
There is still an opportunity for you to input into the plan directly.
This summary of the PAG workshop might give you some ideas for what you would like to tell government about services for people with kidney disease, or you might have other views that you wish to share.
It is vital that the voice of people with kidney disease is heard and helps to inform how the NHS changes over the coming decade. The more the government hear about kidneys the better – we strongly encourage you to share your views!
Key issues raised by the Patient Advisory Group
An increased focus on prevention should mean the things we already know work in preventing kidney disease progressing are available to all. Too many people are missing out on treatments and support that could help them take control of their health and delay progression of CKD. This must be fixed.
A move to digital technology can increase freedom and empowerment but must happen in a streamlined way, so systems talk to each other and multiple apps/logins are avoided. Avoiding digital exclusion must be a priority.
Moving more care to the community is welcomed if quality is assured – people with kidney disease must be confident that healthcare teams have sufficient CKD expertise, fragmentation of care is avoided and all parts of the system work more coherently than at present.
The Kidney Care UK Patient Advisory Group 10-year plan discussion
More care in the community could help people with kidney disease maintain normality, so health issues dominate lives less. Appointments in local settings can be much more convenient than hospital, with less travel time and cost. People are better able to work, study and undertake all their day-to-day family tasks.
Spending less time in hospital means people feel less ‘institutionalised’ and may be at less risk of hospital acquired infection – particularly important for people who are immunosuppressed.
There must still be good access to the specialist care of kidney doctors. PAG members had experienced problems when community practitioners did not have this expertise, particularly when it came to medicines use. Increased care in the community requires better knowledge of CKD across the wider workforce and continuing access to specialist care when needed, to give kidney patients full confidence in the care they receive. Alongside this were questions about whether testing carried out in the community would be as reliable as hospital based testing, for example finger prick tests done at home.
There was widespread concern that more care in the community could exacerbate current problems with data sharing between different parts of the NHS. Assurance is needed that secure, accurate and reliable data sharing systems are in place and it is clear which clinical team are taking ownership of an individual’s care.
Digital devices can mean freedom and empowerment – they allow you to take control of your own health in a way that couldn’t otherwise be done (such as checking blood test results and ordering repeat prescriptions).
Better communication across systems: many PAG members reported problems with connectivity between different healthcare systems. Using technology for better joined up patient records (for example, linking GP and hospital systems) is a priority. This would help ensure that healthcare professionals have all the necessary information to provide timely and accurate care.
Digital exclusion: reliance on digital devices risks excluding patients who lack either the funds to own or run a digital device or access the internet. Some people, particularly those who have not grown up as ‘digital natives’, would prefer not to use technology and risk being lost to the system.
Privacy: it is vital that privacy concerns are addressed, especially with regards to centralised systems where sensitive health data is stored.
Fragmentation of technology. PAG members report already that they are required to use numerous apps and technologies as part of their healthcare, for example the NHS App, Patient Knows Best, apps or web-based systems used by their local primary care teams or hospitals. This increases patient burden, seems inefficient and prevents a coherent approach to managing health. If technology use is to increase, its vital that this fragmentation is brought under control.
An increased focus on prevention should mean the things we already know work in preventing kidney disease progressing are available to all. PAG members highlighted that there are already well known but not consistently used opportunities to support CKD prevention: testing people in high-risk groups to enable early identification and intervention; game-changing new drugs that can delay kidney failure by decades; technologies that can identify those most at risk to target intervention; providing access to diet and lifestyle information and support.
There was frustration that these are not being done already consistently around the country and hope that an increased focus on prevention can mean everyone has an equal opportunity to access this vital support and treatment. Delaying CKD progression and potentially avoiding kidney failure would be huge for the individual and their family, but also for the NHS.
PAG members shared their concerns that while prevention was crucial, there is a continuing need for high quality, specialist care for people with kidney disease. This means both areas of care will require adequate funding.