Listening – My #WOTW

We’ve experienced the pluses and minuses of Doctors listening this week, the first has made me hopeful, the second a bit despairing.

Yesterday saw D’s annual check-up at the paediatric department where she was formally diagnosed with autism and related issues at age 4.5. She’s now 13 so very used to the environment of a portacabin building, with floors that seem to bounce and spring as they are walked on.

The doctor who originally diagnosed her left the department when D was about 7 and ever since then D has been classed as a “floating patient”, which means that she’s not under any specific doctor and we’re never sure who will see her at her annual assessment, which can make forward planning with her tricky.

The last few years’ assessments have taken much the same tone, a “how are you? (and straight into a) How much melatonin is D taking because it won’t be prescribed after 16 years old”, which has been a little frustrating because it has seemed to be all about money (ie the cost of the melatonin).

Melatonin in the UK is classed as an “unlicensed medication” and is not available via a GP btw. I have tried not giving D a dose at night but, as she doesn’t produce the hormone naturally that induces sleep, despite all attempts at a calm bedroom routine, it’s necessary to ensure that she gets a decent amount of sleep.

So, off we popped to the appointment, D had her height and weight measured and then we saw a doctor who had been brought in to help with the workload and it was a really helpful appointment!

She had taken the time to look through D’s (huge) file before we went in so was very familiar with the precocious puberty aspect (we see another hospital department for that) and took the time to ask D about school and how she was generally, before we got to the melatonin question. It made a nice change to be listened to as I discussed a medical concern we had, albeit one which made D retreat to the other side of the room and stick her fingers in her ears!! That latter bit is progress though as she would previously have bolted right out of the room!

So that was a positive for the week. Transition to adult care at 16 years was also mentioned and that’s something we’ll start to prepare for at next year’s appointment, together with school and D’s ECHP.

Which makes me a tad nervous about the medical care that D will receive post-16 years especially after my conversation with my doctor this week who did not seem to listen at all!

Regular readers will be aware of my previous foot operations (to date, one original one on left, one original one on right and then a successful remedial one on right) and that I am having another one on my left foot in the next few months.

I also have some low blood test results, an ultrasound scan coming up in next fortnight and some other “stuff”, all of which is culminating in my wellbeing being a bit low as I know the blood “things” could be remedied if the doctor actually listened and took on board everything. It doesn’t help that it’s all conducted via phone, I feel that sitting in front of someone, showing the concerns would help. But the general advice seems to be along the lines of “your mood is a bit low, have a tablet”.

I know the NHS is severely over-stretched but isn’t it better to actually listen to what the patient is trying to say and try and assist the underlying issue rather that chucking a mood-listing pill at someone?

I am such a firm supporter of the NHS, don’t get me wrong and know of the considerable pressures it is under but feel it is another case of funding, ie it’s cheaper to prescribe the afore-mentioned mood-listing tablets as opposed to treating the issue.

It’s all re-affirmed it to me that D will always need an “appropriate adult” (ie me or Hubbie) at appointments to try and ensure that any issues post-16 are listened to, especially if she’s at the other side of the room with her fingers firmly in her ears!

Listening, positive or negatively, is my word for the week, how’s yours been?

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