24 October 2017

Complaint about Rumer's care, part 1

One year ago today...

Today, 24th October 2017, marks a double anniversary. Not only is it Rumer's 25-month birthday, it is also one year today since we submitted a complaint to the hospitals that provided her care.

After Rumer died, we made requests under the Data Protection and Access to Medical Records acts for not only Rumer's hospital notes, but also all meeting minutes, emails and so on pertaining to her and/or us. It took us a long time to get them all and they came piecemeal and in no particular order. Even now, it seems unlikely that we have all the documents there were. For example, it has been claimed that one significant meeting was not minuted and that consultant meetings are routinely unminuted.

The documents that we did receive raised serious concerns for us, which added to the concerns we already had from our own experience of Rumer's care. When we finished compiling the complaint, it totalled 74 pages. It includes concerns about communication, attitude and decision-making.

We continue to await a response. We were offered a choice of three hospital trusts to conduct an external investigation; however, as of today, there has still not been an agreement with our chosen trust to do so and they wish for us to select one of the other two.

We have chosen to publish our complaint in full in the coming posts, since while some of the issues raised are particular to Rumer's case, many families keen to pursue an active treatment course for their newborn with trisomy 18 report similar (sometimes worse) experiences. The general themes of our complaint, which perhaps could be summed up as collusion and exclusion, seem to resonate even more widely with many parents of very sick children encountering often almost identical problems.

We would love to hear your experiences and comments.

As we have not yet received a response from the hospitals concerned and we do not wish to prejudice the investigations, we shall not be making any additional comments on our complaint at this time. After publishing the complaint, we will record how it was dealt with and will continue to keep you updated through what looks like it might be a very long process.

As usual, we have made a reasonable effort to anonymise the trust and the individuals concerned, with the exceptions of ourselves, Rumer and anyone who does not wish to be anonymised.

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3 comments:

  1. Good to see you guys posting again. I'll be reading.

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  2. Thank you Ana! Life has been difficult and busy for a while now, what with this complaint and the arrival of Rumer's younger brother. Looking forward to hopefully posting a bit more frequently.

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  3. I had heard through the grapevine that you were pregnant again, I'm glad to hear he arrived safely - and that Rumer's story is continuing nevertheless. I can imagine that the joy he brings also makes more real all the things you did not get to experience with Rumer. Hang in there.

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