"Carers experience Edinburgh Royal Infirmary"

My son was admitted to The Edinburgh Royal Infirmary Critical Care Unit after a road traffic incident which he suffered serious injuries.

He was placed in a medically induced coma and on a ventilator. 

Whilst the surgeons and staff did a wonderful job of saving his life, how we his parents were treated was appalling!

During his time on critical care, no Dr or consultant approached us to discuss his situation. This was left to Nursing staff, who although very kind and caring, could only give so much information as it required a Dr to give the detail. He had been there a week when a nurse finally got a Dr to speak to us, for all of 90 seconds. This involved informing us that we had not been on the unit very often and so they hadn’t been able to speak with us. We had been into the unit every day, bar 1 at that point.

We had said we were concerned as we had reported that we felt he had an infection, informed no maybe one brewing, but no need for concern only mild, ( in his discharge notes we find out that in actual fact he had pneumonia). We were also concerned that after being withdrawn from the ventilator he was not waking up and were informed that they had upped his usual medications as they were concerned about fisty cuffs. That was the sole extent of the information we were given from a Dr on the critical care unit. We watched every other relative having Dr’s speak to them but we were ignored.

He was then moved to the orthopaedics ward and this is where our situation became a lot worse. 

As Carers we are entitled to be consulted. We shared information with the nursing staff and stressed that it was important that all staff involved in his discharge would need to consult with us. Again we saw no Dr until nearly 3 weeks in I insisted to speak with one. Finally 2 days before discharge a Dr did but it was to tell us what we would do. OT informed my son we would care for him, they were putting in no extra support, we would get him to appointments, we would make referrals, we would do this and we would do that. At no time even though we requested it did Physio, OT or Dr’s ask what we were capable of delivering, they treated us with absolute contempt. I quoted the Carers Act April 2018 and was told I had got it wrong. I asked for a Carers Assessment this was ignored. 

We were told he was not going to be discharged and then a message was left on my phone telling me they were booking transport and he would be arriving at my home and we weren’t at home! 

We feel that the Edinburgh Royal infirmary treated us with such disrespect and caused such distress that after 20 years of caring for our son and holding down full time jobs we informed them we could no longer support his care.

There response was to discharge him to his home with 2 sandwiches, 2 bananas, shortbread biscuits until a social work referral can be done. Knowing he had no food, no means of getting any, unable to shop as he is not allowed to carry anything.  He cannot wash as he has a rebuilt shoulder that he is not allowed to move for 4 weeks and broken fingers on other hand, 3 fractured vertebrae that although stable if he falls could be unstable. He is at high risk of falls from all the sedatory medication he takes and added ones he now requires. He has been told to wash with hand gel for 6 weeks. An OT assessment that I feel is a complete nonsense that states he was assessed as being independent in all daily living skills, even though prior to his accident he was not independent of these skills. They did not assess how he can cook for himself, make a cup of tea etc. They have made appointments at clinics that he will not be able to attend because he has no means of getting there. He cannot use public transport as part of his prior conditions means this is not possible. We tried to tell the hospital this, we were ignored. 

My son will in all likelihood bounce back into hospital as he cannot manage alone. 

I am devastated! I do not have the energy to care for my son anymore and I am not prepared to. My own G.P. Has had to sign me off work, I am now ill. 

There parting comments, we should be grateful they saved his life and we are, but he is not a piece of meat, he is a human being and so are we. And life is more than repairing the physical. 

I truly hope that no one has to experience what we have done.