1. The NSF clearly states that patients should be educated and given choice - so how is the NSF monitored to ensure that this happens?
2. Can commissioners ask why treatment choices and costs are different compared to the national average?
3. Have there been any outcomes from the Dept of Health workshops earlier this year on patient satisfaction and home therapies?
A: Thank you for raising this issue. The quality of patient choice is highlighted in the NSF and I think, as you imply, there are things that we can do now but, as is often the case in renal medicine, we are somewhat hampered by lack of evidence and in particular a robust tool to assess the quality of choice we offer our patients.
Turning to what can be expected at present:
- Commissioners. The commissioners have a role in ensuring that their clients, our patients, are offered choice. Where units are outlyers it is incumbent on the commissioners to examine why that is and they should be asking units to explain the patterns of care. In particular, as you know, all Trusts are expected to be able to demonstrate that they have offered home haemodialysis.
- Patient representatives and individual patients have a role. In many networks patients are represented at all levels. I think the general feeling is, and several people have expressed to me, that when patients are “in the room” behaviour and actions more closely match patients’ aspirations than when planning and implementation is the exclusive preserve of the healthcare professionals. Some units, such as Guys & St Thomas' have befriender schemes where “accredited” patients provide support and act as a resource for people approaching or at end stage renal failure.
- Provider teams - clinicians and managers. Several units have a systematic approach to examining their pattern of care and “place in the league tables” with regard to the Registry outputs. I presume groups like that Pan Thames Audit Group also provide a similar forum for reflection and questioning practice.
The reports of the Department of Health Renal Advisory Group workshops on home dialysis therapies and patient experience and choice will be published in November. The latter workshop developed a checklist for people on dialysis is primarily aimed at people on haemodialysis, but is has been piloted and hopefully will be ready for general release shortly. We have made some progress with the DH actions from the choosing home renal therapies workshop. In particular, the importance of choice and its implications in planning were discussed in some detail at the first meeting of the 10 Specialised Commissioning Groups we held in September. Ensuring that pre-dialysis care is developed and that choice is integral to service delivery has been flagged as part of the Payment by Results (PbR) Project which is about to begin. This will provide an opportunity to examine costs in units with different proportions of patients on haemodialysis and peritoneal dialysis. I will also be arguing strongly that patient choice and experience metrics should be considered as part of the 18 week pathway project. The latter will cover the whole of chronic kidney disease, one difficult question is how to manage stopping and starting the clock; this will be one of the first 18 week pathways that doesn’t have a “surgical outcome”. The 18 week team seemed to support the idea that the output is a care plan that the patient has – within that I would expect to see evidence of discussion of the various modalities.
Of course each dialysis modality is clinically satisfactory for the majority of patients. The issue really is one of choice. As regards specific NSF monitoring of choice, we do not have such a mechanism in place other than for home haemodialysis where units should be able to provide evidence that they have offered this modality to suitable patients. We do of course have comparative data between units submitted and published by the Renal Registry.
One very interesting idea that Miranda Dodwell, who I met at the Renal Advisory Group on Primary Secondary Care Informatics and who has a keen interest in patient education, has suggested is renal replacement therapy preparation classes. Miranda will be my first guest blogger soon outlining the potential parallels with birth and parenthood preparation classes run successfully within the NHS by midwives, by charities such as the National Childbirth Trust and by NCT teachers contracted to the NHS, which occurs in some Trusts, for example, at the Birmingham Women’s Hospital. Dr Sandip Mitra (Consultant Renal Physician, Central Manchester & Manchester Children’s NHS Trust) runs a very innovative workshop style programme with the multi-disciplinary team, with mannequins and machines for patients together with their carers to get a much better understanding of the options available.
I appreciate that my comments do not provide a solution to this wicked problem but hopefully they provide some opportunity to examine the issue from a number of perspectives. Read an interesting article on wicked problems here.
I would appreciate any comments you may have. I would also appreciate guidance on any work that may be in progress to provide tools to assess quality of choice and I am happy to continue dialogue on this topic.