you can force positive change

Back in late December I had a massive flare up, resulting in my doctor shipping me off to hospital in an ambulance for respite care.

Sadly What you are about to read is quite common amongst the NHS.

To cut a very long story short, the treatment I received at the hands of the hospital was nothing short of appalling. Despite my diagnosis, and a letter from my GP explaining he had already rung ahead and arranged respite care for me.

The consultant on duty (in clinical decisions) insisted on trying to re diagnose me, and also tried to forcibly discharge me. At one point (when I protested that should simply go read my medical notes) a nurse told me 'you can't blame the consultant, I've never heard of it either.'

Basically (like many health care professionals) those in charge of the clinical desicions unit that day, beilieve FM and ME do not exist. Eventually they gave me the fluids I needed via a drip and I was forcibly discharged the following morning, and told that in future the hospital wasn't for respite care.

So once I'd recovered a little (four months later) I begun a complaint against both the consultant and nurse.

After several letters were exchanged between us and the chief executive, the hospital did apologise for many of the errors that were made concerning my care. Further more, it went on to enclose a copy of a leaflet they had acquired from the Fibromyalgia association.

They have now sent this leflet to all staff working in accident and emergency and the clinical decisions unit. The nurse concerned has also (in her own time) made a point of researching Fibromyalgia and ME.

However the chief executive of the hospital still maintained that they do not provide respite care and that should be arranged elsewhere.

Which left me vulnerable, unable to access respite care, our only other respite hospital won't accept patients who need IV fluids.

Some time later I went to see a general physician at the very same hospital, what a breath of fresh air he has proved to be. He has now written a letter to remain on my file.   

This letter basically says that when I need respite care in future I am to be admitted (by ambulance) to the same hospital under his list, given IV fluids and sent back home by ambulance the same evening.

So it seems the hospital is the right place for respite care after all, I am now sending a copy of this letter to the chief executive, for him to place on my file.

It's been a long struggle to get the basic care that I need, but it just goes to show you can force positive change.