"Appalling communication and co-ordination of care"

About: Royal Manchester Children's Hospital / Paediatrics

(as a parent/guardian),

My daughter is currently under the care of the Children's hospital at Central Manchester. At the last appointment at the beginning of June I was advised that my daughter was being referred to another hospital and being discharged from the care of the consultant at Manchester Children's hospital.

I was therefore somewhat concerned to receive a follow up appointment for her through the post last week advising of a further appointment in December 2012. I was even more concerned, alarmed and worried when the following day I got home from work to find a letter advising me that my daughter was being admitted to Ward 76 the following day for blood tests with no information as to what this was for.

I phoned the ward who advised that they had her listed as an admission but were not able to offer any further information. I was advised to contact the Consultant's secretary, which I did but the call went through to voicemail. I left a message expressing my alarm at the fact that my daughter was due to be admitted the following day and that I had no idea what this was for. What concerned me the most was the fact that she had to be admitted and that I was given less than 24 hours notice to plan for this which I think is totally impractical and unacceptable, especially at this time of year when people may be on holiday. If we had just not turned up it would have been marked as DNA'd.

At approximately 9pm that night the Consultant's secretary phoned me and apologised, explaining that a letter had been typed up explaining that my daughter would need to attend for a blood test but that it was waiting to be signed hence it had not been posted out to me. She also explained that my daughter did not need to be admitted as the letter stated. The simple word "admitted" caused a lot of stress and unnecessary worry. The Consultant's secretary advised that she would rearrange the appointment for me for the following week and she phoned me the following day to confirm this.

However, the poor communication and poor coordination of care did not stop there. We arrived at 10.20am, the appointment being at 10.30. At 10.40 I asked when we were going to be seen, as I was conscious that the cream that is applied takes 20 minutes to work, and I needed to be leaving at 11.15am as I had another appointment to attend. We were taken through to see a nurse moments later and the cream was applied.

Whilst the cream was being applied I informed the nurse that I was quite restricted with time as I had another appointment to attend and that I needed to be leaving at 11.15am. I also enquired about a urine sample as when I eventually received the letter advising me that my daughter needed a blood test and also a urine test, the nurse knew nothing about it. I asked if she could check and if we could provide the urine sample, again stressing that I needed to leave at approximately 11.15am. The nurse said that she would check what was requested. We were then sent to the waiting area.

At 11.20 we were called through for my daughter's bloods to be taken. I again asked about the urine specimen, starting to feel a little frustrated as my daughter could have provided the sample whilst sat in the waiting area for the last 35 minutes, and also anxious as I was now going to be late for my next appointment. The nurse explained that she still knew nothing about the urine specimen. I explained that it was something to do with the levels of copper in my daughter's blood being abnormal at the last test. The nurse suggested collecting a sample and then contacting the labs to find out what it was for.

My daughter was then sent to collect a specimen of urine, which she could have done whilst sat in the waiting room for 35 mins. We left at approximately 11.40 - 80 minutes after the appointment for a blood test, at which point I was unable to attend my appointment which resulted in me having to pay £25 cancellation fee.

There is more. At approximately 12.35pm I received a phone call from the nurse explaining that I would need to go back to the hospital as it was a 24 hour urine sample that was required not just a one off specimen. The hospital is not on my doorstep, 9 miles but approximately 30 minutes by car due to the traffic, plus car parking costs. Plus the inconvenience and waste of my time especially when I enquired about the urine test when I first arrived.

One simple phone call, or looking in my daughter's notes would have surely informed the nurse what needed to be done. I asked if the bottle could be posted out to me and I was told "no" - although no explanation was given as to why so I am now expected to go back to the hospital to collect the specimen bottle!

I think this is a prime example of poor communication, disjointed care, waste of both NHS time and resources as well as mine and my daughters. It is not an isolated incident either but a series of occurrences leading to an extremely annoyed and frustrated customer. I am a specialist nurse and I currently work on an NHS improvement programme so I am fully aware of the current demands within the NHS and the pressures that staff work under but feel that the catalogue of errors here were avoidable.

I am not after compensation but I would like to know how the organisation intends to amend its systems to ensure that neither I or other patients / carers / relatives are subjected to the same poor standard of communication and disjointed care.

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Response from Eve Koutidou, Patient Experience & Quality Project Officer , Patient Experience & Quality, Patient Partnership Department, Central Manchester University Hospitals NHS Foundation Trust

Thank you for taking the time to highlight these areas of concern in relation to communication and co-ordination of your daughter’s care. I was really sorry to learn of your experience, and it is clear that the service you received was not of an acceptable standard.

It is difficult to respond in full to your concerns without more detail, and it would be helpful to us if you were able to provide more detail which will let us carry out a fuller investigation. If you would like to do this then please do not hesitate to contact our Patient Advice and Liaison Service on 0161 276 8686 or by e-mailing pals@cmft.nhs.uk

Eve Koutidou

Patient Experience & Quality Project Officer

Central Manchester University Hospitals, NHS Foundation Trust

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Update posted by Annoyed and frustrated (a parent/guardian)

Dear Eve

Many thanks for your response advising me to contact the PALS team to discuss this further. However in doing so I was advised that I would need to email my complaint to the Pals team as they did not have access to Patient Opinion! Once again I am concerned about what appears to be poor coordination and communication between departments.

In addition after chasing up my daughters blood and urine results from over 1 month ago I have been told that we were given the wrong urine both so the test would need to be repeated resulting in yet another trip to the hospital, more wasted time and inconvenience not to mention the financial waste as this will now be the 3rd urine test that my daughter will have done.

I am at a complete loss as to how such poor communication and coordination can be allowed to happen, not to mention the inconvenience this has caused .

Kind regards

Even more annoyed and frustrated