"Absolutely amazing care for the last 16 years 1996-2013"

About: Birmingham Children's Hospital

(as the patient),

I have used a lot of your services over my time and could write a lot about what I liked. I am about to complete a transfer to QEHB. I therefore felt a summary of what I liked and well explained section on what could be Improved was due.


- Consultants always spoke clearly and made information accessible/ understandable for my parents

- Care after and during discharge is exceptional on the whole- I would particularly like to congratulate Gail Fitzpatrick my stoma nurse who still 10 years on will answer phone calls if I have a problem. This is perhaps with the exception of the eye department who did not make particularly clear I still had a residual squint and may need glasses. Age 15 I noticed the deterioration in my sight, something that is irreversible and causing a difficult spiral in my good eye with prescriptions more doubling each 6 months. I hope this has changed for other people.

-Stays were always made fun by our hospital teachers and play specialists


1) Waiting times in Outpatients- I have waited up to 2 hrs after my appointment time in Heart Outpatients mad 5hrs in General Oupatients (although I am aware this has improved since this happened)

2) Number of ITU beds and management of admissions requiring them- I am aware this has yet again improved since I required this service so will not expand although an ongoing issue.

3) clerical organisation- Call Centre- I had a internal referral to a General Practitioner. In order to meet your referral target times the Consultant arranged a special appointment outside clinic time. The call centre saw this and sent a cancellation letter that arrived the morning of the appointment and also failed to inform the consultant they had cancelled the appoint. He therefore sat in outpatients waiting for us. Waste of time. Then the rearranged time by the call centre was inappropriate as it did not allow appropriate consultation time based on, my history. This just meant the consultant refused to see us. He then put us in clinic 5 months after referral as he claims we were rude enough to do a DNA. I saw this correspondence to the person referring in my notes never said to our faces.

5) Treatment of Young People competent of Consent- I will not waste my time explaining what happened in full or quoting GMC Guidance if you want the full information you can ask for it. But to cut it short not being able to/not actually trying find the consent form for someone capable of providing competent consent is not a valid reason for seeking parental consent over the Young Person when they are deemed competent. I make this comment on treatment I received in 2013. Neither is it acceptable to disclose information about the competent person/ their records to anyone (this includes parents) without there consent first unless and overriding reason to do so. I do not mind if that is the case but explanation prior to disclosure against my consent first would certainly have been appreciated. This is aimed at the cardiac secretaries and consultants.

6) A and E Ambulance admission of 16 year olds- some 16 year olds who are being transferred to adult hospitals are still your patients until seen in outpatients in the adult hospital. The adult hospitals do not like interfering with their treatment unless absolutely necessary as this is not their patient. Therefore people you turn around at the door are being transferred back again a few hours later. Wasting everyone's time. My ambulance driver had you A and E number stored in his phone because of this happening on a reasonably regular basis. He now rings ahead to see if you will admit your own patients. It is understandable if you are full but silly all the same. I think you need to look at the policies on this carefully and make it clear to WM Ambulance service what they are. Stop wasting yours, mine and ambulance services time and resources.

Please do not take this to be I have not liked hospital. I love it. Just feel that telling you what your amazing at will not help you move forward and improve your already amazing services.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Deputy Head of Nursing, Patient Experience & Participation Lead, Birmingham Children's Hospital NHS Foundation Trust We are preparing to make a change

Dear Puka123

Thank you so much for taking your time to write such an insightful reflection of your experiences as a patient at Birmingham Children's Hospital over the last 16 years. Principally it is heartening to read that the majority of your time was so positive and that you transfer to adult care feeling that you have experienced ‘amazing services’. It is fantastic to read what a supportive relationship you have clearly developed with your stoma nurse and you highlight very well the importance of play and the school teachers in a children's hospital - services we certainly recognise the significance of ourselves.

However, you raise some extremely interesting points and issues in reflecting on what could be improved. I am sorry that were some situations and experiences that must have been both distressing and frustrating for you. I will ensure that the individual issues and your story as a whole is shared with all the individuals and teams that are mentioned or have responsibility for the issues you raise.

You are absolutely correct in saying that we cannot improve or move forward in developing further unless we hear directly from children, young people and families what we could do better. So thank you again for doing so and please be assured we will reflect on what you have told us and will look at what we can do to change or improve these aspects of our services.

Please do not hesitate to contact me if there is anything more I can be of help with or you wish to discuss anything further.

I sincerely wish you well in your adult health care.

Kind regards,

Janette Vyse

Lead for patient experience & participation

0121 333 8619 or janette.vyse@bch.nhs.uk

Update posted by Puka123 (the patient)

Just thought I must add that it was a nice surprise to see my outpatient appointment letters addressed to me for once showing some acknowledgement that I am deemed competent of consent. Whether that had anything to do with my comments on here I do not know; but if it did it was great to see the change even if they forgot to change the letter content so it says "you" instead of "your child." Although I do think that was quite sweet. Thank you for that small change and I hope it did not just apply to outpatient letters.

Response from Deputy Head of Nursing, Patient Experience & Participation Lead, Birmingham Children's Hospital NHS Foundation Trust We have made a change


Thank you for letting us know, I am delighted to hear that your comments were responded to by the teams involved and there was a change in the appointment letter being addressed to you, even if we didn't quite get get the whole letter right!

I truly hope this will help provide some reassurance not only to you but also to others who read this that it does make a positive difference to your care when patients and health care professionals work together and we learn from the things you tell us are important to you. It is those things that really count in terms of your overall experience, which we try so hard to get right for everyone.

Kind regards,


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