Q: In the last edition of Kidney Life was a brief item about Lord Darzi's Report. Beyond saying this is "relevant because its findings will have an impact on some of the services" it actually said very little.
One of the key strands of the report is patient empowerment. That includes mandatory health care plans for all patients in the next 2 years. So when we see consultants a plan for our care will be produced, agreed, written out in some format, given to the patient and then reviewed at the next clinic. This proposal was in the original Renal NSF and has been ignored. It's now got to be implemented.
The report does not lay out the format of health care plans. So we don't know if they will come as a letter, or if patients will have some form of booklet to update and bring to the next clinic. What would we like to see? Should we for example have a small ring book that will take A5 documents so our plans come in that format. Should we also always get all the test results? If so should we have an explanatory page included?
I think we should have an input into the design of health care plan documents so we produce ones that are as patient- friendly as possible. Otherwise we could get lumbered with details like the repeat prescription forms that are difficult to use.
A: Thank you for your very timely question about developing Kidney Care Plans – it is at the forefront of my mind as we are nearing the halfway point of the Renal NSF.
I have established a representative group to work with me on developing Care Plans for kidney patients which will be available from World Kidney Day 2009.
The Project Group has all the key people who will have a role to play in both using and ensuing usefulness of these important documents. I am delighted that Ray Mackey and Fiona Loud are taking a very active part within this group, ensuring the project stays focused on what patients would like to see and a format that enhances their care rather than becomes a burden to it.
There are a few existing examples of care plans for other services, mental health and cancer for example which we are looking at so that we don’t re-invent the wheel. Simon as you rightly point out the mandate from The Darzi Report does not layout a format for all care plans so this is an opportunity for us to get it right.
We are keen to enable as many patients, carers and staff as possible to have an opportunity to have their say in the development of kidney care plans. A questionnaire was available for all attendees to the recent NKF Conference in Warwickshire where they could complete the questionnaire in confidence at the time, return it to us once they had had time to reflect on their thoughts or talk with Graham Roberts our project manager from NHS Kidney Care. I am delighted we have got so many responses already and those that I have seen were all very positive about the concept. Many gave us some constructive practical advice.
The Project Group has had a very productive Consensus Event to start developing the prototype care plan that we can test out with some kidney services to ensure that it works and is useful. At the event healthcare professionals and patients were in total agreement about the vision of what a kidney care plan will look like and do. The following being key points emerged:
- 'less is more' and that the care plan is no more than a means of planning care in a collaboration between the patient and the health care professional. The information giving side is far less important than the 'process' of airing key issues and making sure all involved understand the others views.
- The care plan must be a paper document, though an electronic version may be useful for those so minded. But most of our patients still deal in paper.
- BUT IT links (especially with Renal Patient View for data) are valuable, even if they should not form the bedrock of the careplan
The next steps are for the prototype to be tested with a large number of patients from the demonstration sites in Derby, Salford, Lister, Cardiff and Leeds. What we learn from these development cycles will then inform a revised care plan which we would like to test with a wider group of patients by hosting a patient focus event in partnership with the NKF. I hope this group will also work with us to start developing the second part of this project which will be to ensure implementation of the Care Plans for all kidney patients.
My vision is that from the 9th March 2009 every kidney service across England will be able to take the template care plan that we have developed and customize it meet their individual patient needs. The service needs to take up the challenge of offering care planning as a essential, modern way of partnership working, for improved quality of life for people with kidney disease.
QUOTES FROM PATIENTS AT NKF Conference 2008:
How would you feel about being more involved in planning your care?
• “An excellent idea, as patients know their own body much better and should be listened to”
• “More confident in the quality of care that I would be receiving”.
• “I think it is vital for patients to be involved in, and fully informed about, their care”.
• “I’d feel better if more involved and as though I’m actually dealing with my renal failure”.