Arriving Late…Fewer than in the past but still too many and not enough choice

It is evitable that some people with advanced kidney disease will require dialysis shortly after they have been identified and without the planning and preparation required for good outcomes. How many of these people have had missed opportunities to either delay progression or plan for a more informed and better start to transplantation, dialysis or conservative kidney care?

Being well prepared, having the space to make decisions about the future, being encouraged to bring concerns and aspirations into the frame, takes both time and multi-professional support. That is why the preparation and choice part of the CKD pathway is included within the specialised services commissioning of Renal Replacement Therapy specification, which builds on the NICE Quality Standards for CKD. We know what looks good - being referred in a timely fashion, having time and support from the various members of the multi-professional team (working as a team) and ultimately, encouraging people with advanced kidney disease to make the right choice for them at that point in time. We can also measure these elements of the pathway, so I was interested to read the PAN Thames audit groups report on The Patient Experience: the treatment pathway of patients starting dialysis as an emergency.

The audit provides a detailed review of the issue of late presentation and commencing dialysis as an emergency across the Pan Thames area. Twelve kidney units participated fully, and one partially, leaving only two units in the region that did not get involved. It covered a three-month audit period with a further three months of follow up and assessed the options, support and treatment of 72 people presenting late to an equal number who received pre-dialysis work up. The methodology could be tweaked by any kidney care network to examine the situation elsewhere.

There was no difference in the age of late presenters and planned starters but they were different in nearly every other respect. Late presenters included a higher proportion of people from the black and ethnic minority origin. They were more likely to receive only verbal information. After three months of follow-up only 20% of late presenters received dialysis through an arteriovenous fistula compared to 65% of planned starters; only 11% of late presenters were transplant listed, compared to 39% of planned starters. Two of the 30 units did not have specific pathways for patients starting dialysis as an emergency.

Patients’ comments ranged from “I would appreciate more discussion on how I am coping with dialysis. Each session leaves me weak and dizzy. I would like to know if this is likely to continue and what the prospects are for reducing the side effects.” (Late presenter)

“My transition to dialysis was well managed and smooth. I am impressed by the professionalism and courtesy of the large number of staff with whom I interacted with as part of this process” (Planned starter)

Patient quotes are invariably valuable and insightful. This audit provides four pages of detailed individual patient comments- well worth reading, whether you are from the Thames region or not. Patient experience is one of our blind spots and studies like this one will fill that gap.

At unit level, late presentation was a feature in between 0-37% of cases. It may have been that the audit period was not long enough to interpret this variance- some of the numbers were quite low. I was however pleased to see that in the bigger units, those accepting more than 40 people onto their dialysis programme during the three month audit period, only one had greater than 15% late presenters- well done, Bart’s (11%), Kent (10%), Kings (14%), Royal Free (21%) and St. Heller’s (15%). These findings are consistent with the downward trend that the UK Renal Registry has reported. With a national fall greater than 30 % of people starting dialysis as an emergency a few years ago compared to 19% in the most recent report. They also suggest that there is still considerable room for improvement in timely referral preparation and choice.

Sue Cox, a Consultant Nurse at Guy’s, Kellie Blane and Joanna Pope NHS Commissioners and Carrie Gardner the Project Coordinator; who led the project, made some specific recommendations including:

1. That all kidney units should have a late presenters pathway which includes an education programme;
2. Information should be audited and improved;
3. Root cause analysis should be undertaken so the reasons for late presentation can be identified;
4. Modality of replacement therapy and vascular access should be formally reviewed; and
5. Renal centres should work with primary and community care to improve systems for early identification of deteriorating kidney function. 

It is encouraging to see this important area has been audited, progression in late referrals and root cause analyses across the patient pathway, including primary and secondary care should help keep this on the agenda with emerging clinical commissioning groups. There is work to be done on improving choice for these vulnerable patients