Q: How can we get Individual Care Plans to become universally applied to all chronically ill patients as is laid out in Lord Darzi's report? I ask the question because of concern that the individual care plans developed for renal patients seem to be the only ones produced to date. The consequence is that ICPs may be confined to renal patient care.
While I am a renal patient I do have other health issues. Personally they have involved skin, eye and dental care. There are renal patients who go to diabetic clinics, vascular clinics as well. The underlying point is that we need to be treated as a whole person. That should also include mental and welfare care.
It looks as if hospital trusts are not making any effort to develop ICPs for all chronically ill patients. I also believe that there is confusion with objective-based care plans that have been in place for many years.
How can we get ICPs developed by patients with support from renal staff? At the moment I get the impression there is a real risk they will be staff run for patients. How can patients become empowered to take responsibility in both developing and applying their own ICPs when they want to? Simon Lloyd
A: Dear Simon
Thank you for your question about getting care plans that work for patients as the norm not only for people with kidney disease but for everyone with a chronic or long term illness too. I would be interested to know your (and other patients’) thoughts on how this can be achieved.
I agree that it has to be our goal not only because, as you say, people with kidney disease often have other conditions such as hypertension or diabetes and many have social or psychological needs that require consideration or incorporation into their care plan.
Care planning is a lot more than giving an individual a standard sheet or booklet. It’s a process that involves a dialogue between the patient and perhaps family members or carers, and the healthcare team. Simon, you make the point that it must be about the whole person not just their kidneys or their dialysis regime; indeed it’s not just about illness.
Care planning is part of the process of helping an individual achieve optimal outcomes as well as the ambitions or aspirations they set for themselves.
So the beliefs and values of the patient are every bit as important as the diagnostic skills and discussion of treatment options clinicians bring to care planning.
Satisfactory clinicians treat the disease competently and safely; good clinicians treat the whole patient and great clinicians treat the person in the context of their social, cultural and family circumstances.
I remember when I first raised the issue of care planning some years ago now. The doctors thought it was something the nurses did but were also concerned they might not have enough time if yet more patient documents had to be completed.
On one kidney unit, that will remain nameless, I was told that everyone had a care plan. I was delighted and asked if someone could tell me more about it, what approach they had taken to achieve such comprehensive coverage and if it might be possible to pinch their ideas and solutions for others to use across the country? I soon realised why my enthusiasm was being met by quizzical looks. I was handed a dialysis prescription chart with the dry weight, heparin loading dose, needle gauge and flow rates scribbled on a poorly photocopied, off-centre sheet. I was barely able to hide my disappointment.
Perhaps it’s the same for a patient when they are given a standard “care plan“ that’s supposed to cover everything but in fact might not cover anything important to the individual at that point in time. A care plan is not a treatment plan.
Treatment plans are of course necessary and it’s right and proper that they should be available and understandable to patients. In many instances these could and should be part of the patient held record. For kidney patients such plans can be kept in the electronic Renal Patient View.
I think most people in the kidney world now appreciate that care planning is much more a traditional treatment plan, but there’s still concern that staff may not have enough time for this additional task.
Care planning and the shared decision making that should occur as part of producing the care plan takes time and often will not be accomplished in one interview. If someone is considering dialysis options, or end of life options, or just the risks and benefits of different medicines given their own particular circumstances, individuals need time to come to terms with the diagnosis and prognosis and to discuss and explore how these options might be best assimilated into their life.
However, an informed and in-control patient supported by the various care teams they need - dermatology, ophthalmology and dental as well as renal in your case, Simon, has both a better experience of care and better outcomes than if, as you put it “care planning is staff-run for patients”. The empowered person with any long term condition is better able to manage their own care than a passive "done to" patient.
The empowered patient route will often lead to less outpatient visits, fewer complications, less anxiety and depression and the need for less inpatient care overall. Investing in care planning saves time and resources overall.
Our challenge then is to make the case for more face to face listening and talking time as a legitimate health resource currency.
Listening to patient stories is not wasted time, explaining options and their potential impacts including side effects and limitations is time well spent.
People like you, Simon, and the National Kidney Federation have to help lead this cultural change.
We need to not only give permission for patients to set the agenda but also to encourage this. People should be prompted to bring their questions to clinics and kidney units, to say up-front what they want out of this particular review and to go away with a care plan that reflects their needs as a whole person.
Healthcare professionals are good at communication, it’s a core clinical skill; but we have less of a track record of working in partnership with patients to achieve useful, comprehensive care plans.
This is something I often talk about with my Tsar colleagues who cover other areas. How do we get this to be the norm and how do we make sure they are integrated so patients have one care plan they own into which all the various professionals feed? Well, first perhaps by achieving this in every aspect of our own renal areas of care.
So for renal services this means an individual patient's plan has input from doctors, nurses, pharmacists, social workers, often psychologists, sometimes dialysis technicians, access or transplant surgeons with the plan completely aligned to the patient’s priorities and personal goals.
This could form the basis of linking up to other areas you need to provide support and input into your plan. Some services such as cancer, heart failure and diabetes are further ahead than others but we do have a long way to go.
This is a big mindset shift for healthcare teams, public and patients; a move from “doctor knows best" to "better outcomes are achieved by empowered patients".
One thing we are exploring in kidney services is to pay more for multiprofessional care planning outpatient visits than for routine, standard follow up appointments.
I hope that provides a stimulus for kidney care teams because individuals in our care teams, and that includes patients, are the only people who can make this happen. We need patients to tell us where this is happening already.
I think we have the principles but as a system we need good examples of how to do care planning in practice – it may well take some trial and error but let’s get on with it. Donal