Warning: possible self harm triggers.
One day recently when Julie had cut herself quite badly, I took
her to the local GP surgery. It was the
middle of the day, and she happened to have an appointment with the nurse there
anyway (to check on a previous wound), so I thought it was worth a punt. A couple of the older GPs in the surgery will
sometimes do suturing for us, but they have to be on duty with time to spare, and crucially you
have to persuade the support staff - receptionists and nurses - to ask them if they will do it. Most of the support staff are
firmly of the belief that suturing is something that can only be done in
hospital and will often refuse to even ask the GP. But this time we were lucky:
the right GP, a nurse who took pity on us and a free slot. We waited about 90
minutes, and the procedure took 15, during which he had a chat with
Julie, who he has got to know from various incidents over the years. It was a very low key response: everyone was
kind, though clearly concerned. The
whole visit was short enough that I could stay to support her during stitching, and we were home before her regular team finished for the day, so they gave her support over the phone. By the evening, we
were all watching our favourite TV show together and Julie was looking better
and it was clear that the crisis had passed.
A week or two later Julie came to tell me she had harmed again:
it was 10 minutes past 5 on a Friday night and I was cooking dinner. The GP surgery had closed, and her regular
support team had gone home for the weekend. The only available option was to go into the
district hospital, as we usually do. I
checked her over for anything that needed urgent attention; I knew there was little point rushing her over for anything that
could wait. What had she eaten that day? Not much, of course - so I finished cooking dinner first and fed her. I finally dropped her
off at the hospital accident and emergency entrance at about 7 in the evening,
with money in her pocket for a taxi home.
Friday night is not a great time to pitch up at A&E: she wasn't seen
until 1 in the morning and then had to wait for the psychiatrist. What kind of conversation can you have with a psychiatrist in the middle of the night? She finally came home at 5, and spent the following day in a state of
morose disintegration. From long and bitter experience, the exhaustion of missing a night's sleep greatly increases the
likelihood of a follow-on incident.
This is not to denigrate the service the hospital provides: they
do a good job in managing the overwhelming demand for emergency services. But the contrast with the previous experience
is stark. It is pretty much impossible
to stay with Julie when the wait is so long: she self harms so regularly that
we've long ago had to make the hard decision to leave her to it. When she was younger, having one parent tied
up in a hospital waiting room could pretty much bring the family to its knees. We often had to miss work as a result, and it
became virtually impossible to carry on with normal life such as shopping for
food or paying bills. Now she is 18 we
leave her to it to minimise the chaos, but we do know that busy A&E waiting
rooms are challenging environments, especially for a vulnerable young woman.
The advantage of the hospital is increased access to specialist
support. In a different stage of her
illness, once she leaves her current service, Julie may benefit from this. At the moment it can be a mixed blessing:
waiting for the psychiatrist is an additional lengthy wait after the immediate treatment for injury has finished, and duty psychiatrists are apt to get edgy about sending her
home. The problem is that they do not
know her - in 5 years we have rarely seen the same person twice - and they do
not know her support team. Sometimes
they have never heard of the service who deal with her, because it is small; and whether familiar or not, they cannot phone them outside office hours. I have regularly been called out of bed in
the small hours to persuade an anxious psychiatrist over the phone not to put
Julie back in an inpatient facility "for safety", and often had to make the long journey
to the hospital to collect my daughter in person.
The ideal care might look like a hybrid of these two
experiences. In an ideal world, Julie's
regular team would continue to provide care after 5pm and at weekends. In an ideal world, treatment for minor
physical injuries would be just part of the service they provide: they would stitch
her up, run blood tests, and arrange for her to talk to someone on site at the same time. Or they might liaise with her GP if she turned up at his surgery first. In an ideal world she would talk to someone
familiar who had the specialist skills needed to work with her during her
crisis, focusing on how she got to this point (again) and how she could have
prevented it. In an ideal world the
response would be low key, friendly but firm, not dramatising the crisis but using
it as a lever to break open the assumptions and habits that bring her through
their doors repeatedly. In an ideal world, family would be welcomed and encouraged to stay, given practical information and advice and emotional support.
In an ideal world, of course, Julie would stop self-harming.

Nothing to say that would help but ((((hugs))))
ReplyDeleteJ x
Thanks Joy - that helps as much as any words could actually.
DeleteIt's not even an ideal world that you are looking for, just a system that is run properly for the needs of the patients xxxx
ReplyDeleteThe system is so far from ideal - and we've been in it so long - it was actually hard to try to imagine what a good system might begin to look like! The only thing that makes it bearable are the staff, who really do try to make a bad situation better as often as they can.
DeleteOut of interest, does julie do DBT? And if only that system existed... :(
ReplyDeleteShe has done bits of DBT - they seem to use a pic 'n mix approach - but not used it systematically. Its been quite hard with her being so young to find something she engages with well.
Delete