"I really want someone to start listening"

About: The Royal Liverpool University Hospital / Endocrinology

(as a relative),

Both my children have osteoporosis and I feel it has taken a very long time for the hospitals to recognise this, 10yrs to diagnose my son and around the same with my daughter. We had countless trips to our local GP and A& E and various specialists over the years, who thought I was an over anxious parent, priceless! My son was playing around when he was rugby tackled in school, we got a phone call to say the ambulance was on the way and he was placed on a spinal board for safety reasons.

When we got to the hosp they x-rayed him and sent him home saying it he would be a little sore for a while with bruising etc, he rested a few days until school on the Monday when he went back in. We got a phone call from a hosp specialist for us to get my son from school immediately and to go the hosp to see her, she told us when we got there that he had multiple compound fractures of the spine old and new. He started treatment almost immediately and as the months went by my daughter started getting the pains back again. We asked could she have the same and we got the same response of growing pains it was like de ja vu again.

She took herself to the GP when she was 18 and explained the constant pain in her hip and back, the GP sent her for a scan the following week and the week later the results were back, she also had multiple compound fractures and very low bone density exactly like her brother. We want a diagnosis for them both, I think they deserve that at least. My sons came back inconclusive because the hip bone basically crumbled when they tried to take a sample under a general anaesthetic. My daughter gave them bloods to do various tests and they are frozen in a lab because we were told the person who done the complex testing has retired and they have nobody else to do them! So what do we do now? In my opinion I have had 16 yrs of being ignored and when finally we get some answers we feel like are left dangling in the wind. I am getting to the stage where I think maybe seeking legal help to get what I need doing to get the answers and for the trauma and pain our family has gone through.

This story is just the tip of what I have to say and I really want someone to start listening. I think I have done the nice approach and hey guess what, nothing gets done.

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Responses

Response from NHS Knowsley

Thank you for raising your concerns. I have forwarded these onto the PALS Team at the Royal Liverpool & Broadgreen University Hospital Trust who would welcome the opportunity for further discussion with yourself, in respect of your concerns, in order that the matter is addressed.

Please do not hesitate to contact the PALS team at the above hospital on 0151 706 4903 who will be able to provide you with assistance regarding this matter.

Kind regards

Jacqui Sellek

PALS Co-ordinator

NHS Knowsley

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