Epilepsy is a very individual thing to manage - and we currently have a bit of an issue around his epilepsy rescue medication - when to intervene with what. The protocols we've had to work up run to about six pages and cover a series of escalating drug interventions and are designed to keep him out of status (continuous, intractable fits). He's never been fit free but on an average day has about 5 to 7 fits that we don't react to. It used to be that the nurses used their training and clinical judgement to assess when he'd had too many fits, or they were getting too close together to become a problem. But in these days of 'nursing by numbers' it's all spelled out in fine detail, so that if he has one fit lasting a certain time, or a series of 3 in a fixed period, they use drug A, and if that doesn't stop them in a set time, they go to drug B etc.. Things have got so complex and prescriptive that the nurses are now questioning whether the specified times include just the fit itself or also include the recovery time. I think it's far too prescriptive but have a lot of sympathy with them, as they are at risk from CQC and the PCT, and potentially could lose their registration if anything goes wrong. CQC and the PCT insist on everything being protocoled, taking away all the clinical judgement and the nurses ability to act in his best interests. I'd be far happier with a real 'no blame' culture where the nurses could decide for themselves what treatment was right for him, balancing out control of his fits with his quality of life. We could stop him fitting tomorrow - he just wouldn't be awake or have a life, and he'd probably succumb to a major chest infection quite quickly. But to be 'safe' they have to keep to the protocols - so now we have to have another meeting to fine tune, micro manage the trigger points on paper, rather than seeing how he really is. It seems more important to be seen to be doing it right than actually doing it right in practice.
His epilepsy protocols are just one set - he has similar things for gastrostomy (feeding direct through stomache wall), oxygen, various PRN (as necessary) medications, hospital admission, antibiotic use etc. etc.. We wouldn't trust a nurse with him unless we (and they) were happy doing his care. The paperwork seems to exist largely to cover the back of the PCT. They say its because they have a 'duty of care' but the reality is that we don't actually have protocols for airway suction because ' it's still with the solicitors'.
I'd be much happier if the nurses could be allowed to nurse and we could concentrate on giving him a life - as it is we'll all have to spend even more time making up forms so that they can tick boxes in them and the PCT has someone to blame if it doesn't work.