People engaged in palliative care will have been poring through the new Continuing Care Guidance, which has been out for a month or so. However, there is an important new wrinkle: the implications of the new Checklist process.

The Guidance on the web at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_115477.pdf

This is the latest re-write, after the fairly extensive review about 18 months ago. It is not changed in principle (how could it? the law hasn’t changed) but the present document counts as a substantial further bureaucratisation of the process, which I shall comment on again as I come to write the guidance for staff at St Christopher’s.

However, first off the stocks (due to its increasing impact) is the further pumping up of the checklist. At one time this used to be seen as a nice little extra to help staff who didn’t come across continuing care all that often decide whether they should go the whole hog of the intensely time-consuming Decision Support Tool (DST). However, it has become a procedure all its own, with a full Chapter in the new Guidance. And you have to make sure you’ve got informed consent and give notice that you’re going to do it so that patients and their families are not assessed unawares. Which rather defeats the original purpose of a quick and dirty guideline for staff. It is in this way that things become bureaucratised.

If you wondered why this is, it is because there have been difficulties when PCTs have decided not to go ahead with doing a DST. If there is no checklist, they can be criticised for not having considered that decision carefully enough, or for being obstructive (perish the…). So they have started to use the checklist as proof that  they have been through the circumstances properly.

What this means, of course, is that another stage has been inserted into what is already a bureaucratic nightmare. So you have to have a Checklist done (it has acquired a capital C – and rightly so now it’s a fully-fledged bureaucratic nightmare in its own right). Then they can decide whether to get a DST done. And if you don’t have a DST done, you can prove that you were right not to have a DST done, so loads of people who have a slim chance of continuing care are going to have checklists done on them so that the PCT can prove if anyone ever asks that they reasonably decided not to do a DST. This reflects the fact that a DST is so time-consuming that no sane health or social care staff would do one unless they couldn’t avoid it; it is no doubt true that as a result some people were slipping through the net.

This is a very real problem where you have patients who are receiving social services community care, which they have to pay for. Once set up, this tends to go on, even across hospital or hospice admissions (Discharge coordinator: ‘Oh blessed relief they’ve got a package, we can send them home again hassle-free’). And the people who review it are from adult social care departments, who are not usually centrally involved in continuing care, and don’t do assessing health needs, so don’t think in detail about whether someone has got to the point of being entitled to continuing care (to get which you have to have a ‘primary health need’).

The problem is, though, that someone who has been getting a range of services for some time and whose health needs rise (as health needs tend to do as you get towards the end of life) may well be paying for a package that they should now be getting free from the NHS. Hence the Guidance emphasises fairly strongly that adult social care staff and anyone else (step forward, hospice home care CNSs) should include a checklist in any reviews that they do. Otherwise, people may be paying for what they should have free.

This seems likely to lead to a whole lot more Checklists (with informed consent and notice) being done. The benefit may be a rising awareness among patients and their families that they can argue about whether they have got to the point of eligibility for continuing care when things seem to them to be getting worse. This is good for their knowledge about and rights to free care, but not so good if it means they have to submit to more checklists.