"Appalling care and communication at RMCH"

About: Cumbria Teaching PCT / District nursing North West Ambulance Service NHS Trust Royal Manchester Children's Hospital / Paediatric surgery

(as a parent/guardian),

My daughter was due to have an operation. We have to travel many miles, using the ambulance taxi service to get to Manchester.

Despite this, outpatient appointments, the operation itself, and follow ups were/are frequently cancelled at the last minute leading to a huge amount or reorganising of taxis, hotels and my full time employment, where leave must be taken and my own patients cancelled.

An apology, in our experience, seems to be impossible at this hospital and from what we've seen - one department does not talk to another; the medical secretaries we've encountered have been especially arrogant and rude.

It transpires the diagnosis was a hypothesis rather than a 'fact' and surgery was not in fact required as..it is hypothesised AFTER surgery...the condition had corrected itself before surgery! My daughter's surgery was therefore unnecessary and we were not told this was even a possibility, let alone been given any alternative options to surgery.

We were presented with 'facts' that were based on a radiology report on an apparently vague and unreliable scan...we were therefore completely misinformed and not given a chance to make an informed choice.

Surgery would NOT have been an option had we been given the correct information we'd been asking for. My child has now got to recover, with two large scars, from an unnecessary operation.

We found the bank nurse assigned to us was incompetent; they repeatedly read the medication chart wrong giving the excuse that they'd 'forgotten their glasses etc', took us to x4 operating theatres by mistake, had to be told they needed to go to recovery with me, disappeared while my daughter was in theatre for 3-4 hours rather than the expected one hour - during which no information other than, 2 hours later, 'there are complications'.

This was traumatising and my daughter woke up in sheer terror, with a sky high temperature, in extreme pain. The consultant, refused to allow me to see the notes - I had to make a written data protection act request which I gave to the nurse at the time, and again requested via email - despite strict legal timescales I have still not received these.

The doctor spoke to us and agreed that further scans before an operation would have been prudent but did not happen. They agreed to see us at a Saturday clinic as we are now needing to take unpaid leave due to staying in hospital far longer than we were told was needed. The medical secretary has now said we cannot have this as the doctor only does appointments at certain times in the week. This is despite the fact the entire conversation was heard by her father and grandfather, a retired GP, as I told the doctor I was on the phone to them at the time and they wanted to hear what had occurred.

We are still waiting for an appointment (the follow up was in any case cancelled by RMCH for unrelated reasons). We had no follow up or discharge information on the type of stitches, wound care, when to resume school etc. We waited 9 hours for staff to give simple medication and call the ambulance taxi (never any problem when called by the patient directly so I can only assume it was due to a problem with RMCH staff).

The health visitor here was upset as they only got an answerphone referral asking them to do a follow up on a Sunday (when they don't work). We were finally called back recently (for a Sunday appointment) by the Medical Secretary who made no reference to the fact that we had been promised a Saturday follow up and have witnesses to that and talking over me to rebook a Wednesday appointment.

The communication, and care itself here, has been appalling and utterly disrespectful in our experience. It has been, and continues to be, a traumatic and unnecessary ordeal. We no longer trust that, when an appointment is given or solution offered, RMCH staff will honour it.

I wish for explanations in writing first and foremost to ensure our daughter is WELL (and that I can actually get to my own work around the shambles of RMCH cancelling and not honouring appointments).

I find it hard to believe that an NHS trust, and it's staff, can operate in such a shockingly disorganised, disrespectful and lax clinical manner.

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Response from Central Manchester University Hospitals NHS Foundation Trust

We are very sorry to receive your comments and concerns via the Patient Opinion website about your experiences at RMCH.

It is very difficult to respond to the specific concerns you have raised without being able to investigate in detail. We take all issues surrounding patient care very seriously and would very much like to hear from you directly about this.

If you contact our Patient Advice and Liaison Service on 0161 276 8686 or by e-mailing pals@cmft.nhs.uk they will be happy to discuss this with you.