We've recently had Alexandra's annual check-up with the paediatric gastroenterologist. On a positive note we've graduated (been down graded?) from seeing the consultant to seeing a registrar, which is a good sign (I think) that we're managing well. On the down side, at this most recent appointment, the registrar struggled to find the light switch in his office at the start of the appointment and struggled all the way through what should have been a straight forward check up following that.
To jab or not to jab?
Once I'd told him that we were managing Alex's diet well, apart from the odd blip here and there, I think the poor guy wanted to make the visit worth our while by offering some sort of doctorly advice. He started by telling me about the 'new research' that suggests Coeliacs should have a pneumococcal vaccine as well as the usual vaccines such as flu vaccine. 'I think the pneumococcal is part of the usual suite of childhood vaccines anyway', I suggested, 'but are you recommending that Alex should have the flu vaccine this year? Is she more at risk because of the Coeliac's?' (I asked!) Beads of sweat suddenly appeared on this poor doctors brow. 'Oh, err, I don't really know, I'd have to look it up, I'll get back to you on it' came the response. 'Well why did you bring it up in the first place' I said in my head, but maintained my respectful silence which a Doctor is surely due. Luckily, Coeliac UK have a page of information on vaccinations which is straight forward and reassured me that no, she doesn't need a flu jab! (http://www.coeliac.org.uk/gluten-free-diet-lifestyle/vaccinations)
Dr Who did you say your name was?
I began to question whether this guy had picked up the wrong identity badge though and was actually a janitor acting up for the day, when I said that although she is following a gluten-free diet Alex sometimes complains that she wishes she was 'gluten' instead of 'gluten-free', as she explains it, and he asked me did we want to trial a reintroduction of gluten into her diet. I think I loosened a few teeth with how quickly my chin hit the floor! 'WHAT THE F###!', I did not say, but screamed silently in my head. Five minutes earlier I had told him how violently sick Alexandra gets when she accidentally ingests gluten and he asks me if we want to deliberately give it to her?! I think he saw the incredulity in my eyes, because the beads of sweat started to roll down his face and he mumbled, 'actually, maybe we should wait until she's a teenager, there's no need to think about it just yet'. 'OR EVER YOU LOONEY', I thought, again in my head, as I quickly grabbed Alex's coat and ushered her out the door.
How it should be done!
Usually our follow up appointments are straight forward. Initially they were 6 monthly, and now yearly. Alexandra is usually weighed and measured, bloods taken and then a quick chat with the doc to make sure everything's ok. The blood test is the worst bit for Alex. You can get a cream to numb her skin before having the blood taken, but we no longer do that. This is because the palaver of putting the cream on, covering it in clingfilm, waiting for half an hour before then getting stuck with a needle seemed more traumatic than just taking the blood and getting it over and done with ASAP. When she was little Alex used to keep trying to pull at the plastic, and when she got a bit older, it just reminded her of what was to come and she started bawling when ever she caught sight of the clingfilm. I have always found the hospital nurses to be amazing though when taking blood- very kind, reassuring and the play therapists are great at distraction.
Following the follow-up....
Overall, our experience of follow-up care has been alright when we've actually seen the consultant. It's the process of getting to see her that's been the problem. Communication is not always easy within a big department in a big hospital. Because appointments are booked centrally, messages sometimes don't get passed through- as I discovered when I had a health visitor wanting to visit my home because I had not been taking Alex to her appointments. I hold my hands up, I did miss one appointment, but it was a few weeks after I had given birth to Katya, my second daughter, in the back of a car, so in fairness, my head wasn't quite in the right place. When I tried to rearrange, the next available appointment was 9 months later- on the day I was starting back at work. I phoned to cancel and rearrange this and they took the cancellation and agreed to send a new appointment. Unfortunately, neither of these things happened, so although a new (miraculously earlier) appointment was booked for me, I was never informed of it and got sent another DNA letter. Then the message that I'd cancelled the appointment on the day that I was due back at work never made it to the consultant, so another DNA letter- 3 strikes and you're out! I guess on the plus side, if I had been deliberately keeping Alex away from appointments, then this was picked up and something would have been done- you've done a good job safe-guarding system! I feel a bit irked though, that I was actually fighting to try and get Alex seen but my/ her record makes it look like I was neglecting her care. The lesson I learnt is to find out the consultant's secretary by name and ask to speak to her directly to try and get things sorted-which is much more straight forward!
Dieticians know how to party!
The other side of the follow up support at QMC has been the dietetics department. I met with a dietician a couple of times immediately after Alex was diagnosed and it was really helpful to talk through how to manage the diet. The best thing that the dietetics department has done while Alex has been with them though, is they hosted an Easter party a few years ago for all of their Coeliac kids and their families. It was fabulous- the kids could eat anything they wanted and meet other children with 'special tummies', and we could meet other parents at different stages in their Coeliac journey, share experiences, tips and support. For me, it helped to highlight that there are lots of parents of gluten-free kids out there, and we are all managing to get by and can really learn from each other about how to cope. I guess, in part that's why I started this blog!
Anyway,I know follow up care varies from place to place, and compared to some areas, we have it pretty good. Alex remains well and strictly ON her gluten-free diet, and by next year there'll be a new registrar to offer us their pearls of wisdom!
I'd love to hear anyone else's experience of follow-up care.
Jen
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