How to push a hospital for action?

How to push a hospital for action?

Author
Discussion

BigGingerBob

Original Poster:

1,813 posts

197 months

Monday 14th October
quotequote all
How do I go about pushing a hospital department for answers/ action?

My daughter has Hydronephrosis which is essentially fluid around the kidney that could be caused by a blockage or something else.
This was clocked at our 20 week scan and we were told that it usually goes away on it's own during pregnancy or very soon after. If it was still there once she was born then a course of antibiotics would be in order and it very often clears it up. In rare cases she might need a bit of surgery to clear it up but that's in the worst cases.

She's now fast approaching 10 months old. She has had three scans all of which have resulted in nothing. The fluid is still there and doesn't seem to be reducing in size and yet we are told to just wait. Even the NHS website says that left unchecked it can cause permanent damage to the kidney including scarring.

I am worried, of course, but it's compounded by the fact that kidney failure was a large contributor to the death of my Uncle. Probably unrelated and not hereditary but we aren't sure.

How do I get a second opinion or get something started?
I'm aware that these guys are the professionals and know what they're doing but there is no explanation and it's starting to get worrying. If a short course of antibiotics can get rid of it then why has it not been prescribed?

Thanks.

The_Doc

5,121 posts

227 months

Monday 14th October
quotequote all
Write to the PALS office. Be nice and factual.

BigGingerBob

Original Poster:

1,813 posts

197 months

Tuesday 15th October
quotequote all
Thank you, Doc. I didn't know this service existed. I don't have much experience with the NHS.

I will get all the letters together and build an argument. I just feel like she's being ignored and the doctors are going against the advice they gave us

Riley Blue

21,628 posts

233 months

Tuesday 15th October
quotequote all
I don't think you need an 'argument' at this stage but a request for a second opinion which you're perfectly entitled to.

Do you have on-line access to your daughter's medical record via your GP surgery? If not it's worth registering for access as it should include any correspondence from the hospital.

BigGingerBob

Original Poster:

1,813 posts

197 months

Tuesday 15th October
quotequote all
Riley Blue said:
I don't think you need an 'argument' at this stage but a request for a second opinion which you're perfectly entitled to.

Do you have on-line access to your daughter's medical record via your GP surgery? If not it's worth registering for access as it should include any correspondence from the hospital.
Yes, argument probably wasn't the right word. We need the letters to set out our point of view.

We will register with that service tonight. Thank you

Anastie

193 posts

165 months

Tuesday 15th October
quotequote all
PALS (Patient Advice and Liaison Service) will support you regarding any concerns you have.

As mentioned you have the right to ask for a second opinion and can lodge a formal complaint if you wish.

NHS complaints procedures have to follow specific time frames so this could help towards getting an outcome you are happy with.

Jack ketch

35 posts

85 months

Tuesday 15th October
quotequote all
What ever you do do NOT rely on the hospital complaints procedure. Our trust currently advises 60 WORKING days for providing a response to the query, but not guaranteed; prior to this they advised that they had no time frame to work within. I doubt other Trusts are any different. The Trusts states they try to reply in 7 days but this only means acknowledging your communication. As others have said PALS is a good starting point, my experience is that you need to keep at it weekly or they will work on the basis you will eventually go away. If you can get hold of the CEO email address use it. Become a pest (no need to be rude); it is your daughter.
Rick

Downward

4,073 posts

110 months

Tuesday 15th October
quotequote all
Try going to the GP for a referral to a different Trust.


LosingGrip

7,967 posts

166 months

Wednesday 16th October
quotequote all
BigGingerBob said:
How do I go about pushing a hospital department for answers/ action?

My daughter has Hydronephrosis which is essentially fluid around the kidney that could be caused by a blockage or something else.
This was clocked at our 20 week scan and we were told that it usually goes away on it's own during pregnancy or very soon after. If it was still there once she was born then a course of antibiotics would be in order and it very often clears it up. In rare cases she might need a bit of surgery to clear it up but that's in the worst cases.

She's now fast approaching 10 months old. She has had three scans all of which have resulted in nothing. The fluid is still there and doesn't seem to be reducing in size and yet we are told to just wait. Even the NHS website says that left unchecked it can cause permanent damage to the kidney including scarring.

I am worried, of course, but it's compounded by the fact that kidney failure was a large contributor to the death of my Uncle. Probably unrelated and not hereditary but we aren't sure.

How do I get a second opinion or get something started?
I'm aware that these guys are the professionals and know what they're doing but there is no explanation and it's starting to get worrying. If a short course of antibiotics can get rid of it then why has it not been prescribed?

Thanks.
I had this when I was a kid. Like your daughter, it was picked up during a scan (apparently one of the first at thst hospital).

I had to have an operation when I was three/four. 35 now with no issues.

Fingers crossed you get it sorted. From my understanding the op is a fairly straightforward one (but if it can be avoided of course that's better!)

Riley Blue

21,628 posts

233 months

Friday 18th October
quotequote all
Downward said:
Try going to the GP for a referral to a different Trust.
Based on my O/H's experience there's little chance of this. She wanted a second opinion on a consultant's diagnosis following a scan but from a different team, i.e. not from one of his colleagues.

Her GP referred her to a hospital in a neighbouring trust who dismissed the request out of hand, no explanation given.

BigGingerBob

Original Poster:

1,813 posts

197 months

Friday 18th October
quotequote all
Just an update, I left a message for the PALS team on Wednesday and they called me today. The lady was lovely and she's going back to the paediatric team to get some answers.

Thanks for the advice everyone!