On Friday we had a Paediatric Diabetes Clinic appointment and Annual Review. It should have been in January, to give you an idea of how shambolically incompetent our current healthcare providers are at the outset.
Ds12’s hba1c, the average measurement of blood sugar over the last three months, has risen since we have been on the pump from 7.3 to 8.3. We were told we weren’t doing well enough and that the pump probably wasn’t appropriate for us. I argued that we would do whatever it takes to keep it, since it has been utterly life-changing in a good way, to the same degree that suddenly having to inject insulin was life-changing in a bad way. The meeting was combative and left Ds distressed and in tears.
On Saturday morning I woke at 4am absolutely furious, because for 2 and a half years we have had the most appallingly poor and low level of care. I have wanted to transfer out of this health authority; the only reason we have stayed is that our pump of choice is not supported at any other local hospitals as far as we know.
A brief overview of the ‘care’ we have received so far:
- We were released from hospital without enough test strips to cover the weekend, and we were told by our PDSN to inject insulin without testing! On the advice of the national parents group, we went back to the hospital who were happy to supply us with extra strips.
- Our PDSN routinely ignores calls, texts and emails. He is currently on long-term medical leave, but did not bother to let us know.
- His inbox is supposedly going to the new additional PDSN but we didn’t hear from her either. In fact, she has been in the practice for over 6 months but we were not given her number until Friday. Either the calls are not being forwarded, or she also routinely ignores them, as we have not been able to get hold of her through his number, nor has she bothered to get back to us.
- After the initial week of visits, we were left completely to our own devices, and were left to cope for 6 months without any lantus (it turned out we were injecting it wrongly, but we had to discover that for ourselves). Controlling the blood sugar during that time involved 2-hourly bolus injections day and night. But we had no help, visits or advice from the PDSN. The Consultant, during this time, suggested it was due to insulin resistance and did nothing to investigate or help us.
- Despite the above, we managed at that time to keep the hba1c to 7.3. In fact we were originally refused a pump because our control was ‘too good’!!
Overall, I have been disgusted with the absolutely total lack of service, lack of contact, lack of help and lack of empathy.
It really isn’t acceptable for a child to leave the clinic in tears, angry, upset and distressed, frightened that he will have his pump (which makes life worth living as far as he is concerned) taken away.
We work bloody hard, and to my mind, we should be congratulated and our dedication should be acknowledged. Instead, the consultant is patronising and mocking. He dislikes our lifestyle and philosophy, the fact that we homeschool, and takes every opportunity to criticise. He told us on Friday that we should consider school now because Ds ‘obviously’ isn’t getting enough exercise (he has put on weight since the last appointment). I know, however, from conversations on the parents list and with other parents I know personally that the biggest complaint parents have is how badly the schools care for and manage their children’s blood sugar. Only last week we were told a story of a child who had refused to go on a school trip to Germany because she did not feel confident about their care. The only other 2 children with Diabetes who went on the trip ended up in hospital with Diabetic Keto-acidosis.
School would not be helpful in our case for a number of reasons that I won’t go into now, but suffice to say that the consultant’s tone added to Ds’ distress and fear. It was completely unwarranted and unhelpful.
It really makes my blood boil that they are threatening to take the pump away. If we had had an adequate level of help, I am sure that we would have had much better results.
Interestingly, on the way out, we met the family with whom we started the pump trial. They told us that they are having EXACTLY the same issues. Their hba1c has gone up, they are finding it hard to manage, and control is more elusive than it was on injections, but the benefits for the child are immeasurable and they don’t want to give it up. Needless to say, they also have the same issues with the PDSN.
There is no doubt that using a pump is much more complicated that injections. Leaving us on our own to figure it out is absolutely ridiculous. Threatening to punish us because we haven’t managed to figure it out on our own is unbelievable.
So at this point, depending on whether and where we can transfer and still keep our pump, we have every intention of transferring out of our current health authority. Hopefully, this pattern of incompetence, apathy and punitive, unhelpful attitude is not prevalent throughout the country.