Dr Kerry Tomlinson, Transplant First National Project Lead
The Kidney Quality Improvement Partnership (KQuIP) has visited most regions in England and facilitated group discussions around barriers to access to best practice transplantation. In every region there are areas of good practice, but no region has transplant listing absolutely cracked and we found several themes which keep repeating themselves. I presented these at UK Kidney Week (UKKW) 2019 but, for those of you who couldn’t attend, I have summarised here. I have focussed on why transplanting and referring units may be different.
Getting together
For many regions, the KQuIP events are a new and welcome opportunity to work together as a whole multi-disciplinary team (MDT). Hopefully if you are doing the Transplant First project you are continuing to find this. But tense relationships and hierarchy can creep in leaving things unsaid by some, and too much said by others. People often tell the KQuIP team something they haven’t felt comfortable saying openly. For example, referring centres at times don’t “speak up” to the transplant unit and other MDT members do not challenge consultants. This hierarchical problem is well recognised in the NHS and not limited to transplantation but by being aware of it we can try and overcome it.
Interactions and pathways
During process mapping and discussion, it often becomes apparent that change needs to start further “upstream” in low clearance services. Although this may seem obvious, in practice, a lot of work is focussed downstream.
Often referring units are working with two transplant units with different requirements. There may be two step processes e.g. satellite units which cause delay. Handover points often go wrong and may have simple solutions. For a lot of patients there can be a surprisingly large number of visits (especially for donors) and complex pathways.
Referring and transplanting unit nephrologists, cardiologists etc. are treated differently. Often transplanting units want to repeat assessments with their own clinicians.
Assessment Guidelines
There were very few regions or referring/transplanting unit partnerships with agreed assessment guidelines. Sometimes transplant units had non-evidence based, rigid requirements e.g. CPET testing, BMI cut offs, need for a dental check-up, which were described as contributing to significant delays. Shifting goalposts and personal opinions mean that referring units are sometimes left guessing what is needed and frustrated when they are asked for extra tests after the patient is seen at the transplant unit. Equally, transplanting units are frustrated when referring units give incomplete information. Much of this could be avoided if pragmatic guidelines were agreed.
Common barrier themes: Clinical
- Access to cardiology (tests or clinicians) was the most commonly cited clinical barrier. Often units perceived this as a resource issue, however this could largely be overcome with pathway changes. For example, starting assessments early enough, having clear requirements and uniform pathways, or not requiring test which are hard to access and don’t have good evidence.
- The next main area of concern was obtaining specialty opinions and the long delay it typically caused. Although there is no clear answer, I have started writing to specialties in a very different way pointing out:
- Kidney failure and dialysis has a poor outcome, and this is improved by transplant
- Audit has shown one of our main avoidable delays to transplant listing is specialty opinions
- Please can a consultant reply directly to me and answer some specific questions (life expectancy, affect of condition on risk of operation and immunosuppression, effect of transplantation surgery and immunosuppression on their condition)
I have no numerical data, but my impression is that the replies are coming sooner and are more useful than previously.
- Decision making, particularly when there is bidirectional flow of information can also cause significant delays. While the use of transplant listing MDT meetings can help with this there was often a feeling that they could also slow down the process or add complexity if used unwisely.
Common barrier themes: Resources
Finance and commissioning are frequently cited as a barrier. The most commonly mentioned issues are access to specialist transplant nurses, or nursing time dedicated to transplant listing and donor workup. Time in clinics or clinic capacity can also be problematic. Although anecdotal, some units have found that going through the Transplant First and GIRFT processes has given them the evidence they need to increase resources.
Despite all the above there are referring units which are listing patients for transplantation earlier than their transplanting units. Common themes in these units are:
- Having a clinical champion for transplant access
- Close surgical interaction and clear pathways
- Direct access to cardiology tests
- Undertaking a QI project in the area
- Systematic review of transplant status at various points in the patient pathway
- Continual eye on performance
- Specialist nurses
I expect a lot of this will be familiar to anyone working in low clearance and transplantation pathways. However, for any of the common barriers there is at least one unit or region that is doing it more effectively or working on ideas. Hopefully you are finding solutions and we in the KQuIP team look forward to learning from you and sharing your ideas.