The broken machine and the lack of a rule book

So, the 'most fragile suction machine in the world' has finally given up the ghost entirely. The plastic rim has split off completely and consequently no suction at all. We have a smaller machine but it can't be used when it's recharging, so we've had to get an old one (that we saved from being thrown out) back into service. No response to our requests for mend/complaints yet, so they've been slightly escalated. All this takes time away from actual caring - that's why the nurses haven't been able to chase it up properly. So he's back with us and we have to find time to chase up problems like this as well.

In himself, he seems OK but he does seem to be having rather more fits than normal today, so we're trying to identify a cause. Discomfort/pain often sets him off with asthma or fits - partly a stressed reaction, partly communication. Current favourite is tight chest due to hay fever reaction and increased salivation going down the wrong way, but it's more speculation than science. Managing a condition like his is very much a 'seat of the pants' operation. Oddly, panadol often stops him fitting - by reducing the pain/discomfort that is causing the fits in the first place. It worked today.

There is no rule book. (There are lots of protocols, but that's another story.) He hasn't even got a formal diagnosis - just a cluster of symptoms. It could be Otahara syndrome (what Cameron's child had) but he's a lot older so we haven't had the tests (not available when he was a child). It wouldn't change his treatment anyway, so no point in doing it now. It came as something of a surprise when we were told (when he was a child) that a third of neurological conditions had no formal diagnosis. I'm still taken aback sometimes by how poor medical knowledge really is. I find the confidence of doctors is often a smokescreen covering a real lack of knowledge and their apparent certainty is often based on not much more than opinion or a current 'flavour of the month' treatment. Some medics really believe they know what's going on, some admit there are limits to what they understand but quite a lot know they don't understand but feel they have to put on a confident front. I tend to have most trust in the ones who admit their limitations.

Hospital makes you ill

Sunday went rapidly downhill after lunch. Lots of bright sun and happy people sitting outside pubs. But we had an appointment with a neurologist at the hospital. (They're so far behind, they have to do weekends to catch up.) It was on time, so that was nice, and it lasted about 10 minutes. And in that time he managed to check my son's medications (x2 pages of complex anticonvulsants, antibiotics, asthmatics, etc. etc.), assess his stability and decline to support us in keeping him out of hospital. We have 27 years experience of dealing with my son, the nurse (who was also there) has worked with him for over 3 years and this consultant has seen him twice for probably half an hour in total - so he's obviously much more experienced than we are.

His epilepsy has never been that well controlled - 5 fits a day is fairly normal, he rarely has a fit free day. We have a complicated set of management/treatment protocols involving 3 fairly heavy duty drugs when he gets really ill and his fits threaten to go out of control. He doesn't cope well with hospitals, often communicating by increased numbers of fits and worsening asthma as he gets increasingly stressed. His medication timing gets buggered up by the ward rounds and the ward nurses are untrained in his specialist care e.g. gastrostomy etc.. Hospitals are geared up to look after ordinary people who are unwell, in our experience they don't cope well with disabled people or those needing management of a long term condition. (See Mencap's Death by Indifference report.)

What we wanted was some support on how to manage him at home when he got ill - what we got was a blank refusal to even discuss it. He didn't want to know about the fact that we had 24/7 nursing care, or even look at the elaborate protocols we've worked up over many years with the specialist epilepsy nurse, his GP and a host of other professionals. 'If he goes into status, some people die of it, so he has to go into hospital - otherwise I'll get disciplined for not following the guidelines.' No conversation about what would be in the patients best interest, just a blanket covering his back statement of policy. Medicine these days seems to be more about protecting the practitioner from being sued than looking after people.

I came out feeling depressed - now it's sunk in I'm starting to feel angry.