"Poor care & letting me down with medical care"

I feel I have had very poor care by the medical services of the NHS, mentally broken by the care I have received and feeling the worst I have ever felt. What I have experienced and witnessed, I wouldn’t wish upon anyone. If this is happening to me, who else is going through this too.

 I had to come into Ayr hospital due to increased pressure linked to my chronic headaches/ IIH. I received a lumbar puncture. I have had these before but on this occasion the way it was done was different, it was pro-longed and I instantly took very unwell, as well as experiencing extreme weakness in my lower legs and nerve pain through spine and down my  full left side. Then I was just given my discharge letter by an ANP and said I was ready for home, at that point nobody thought to check if  I was ok after the procedure. It was only when trying to leave hospital that my partner spoke up and asked the staff who made the decision to let me leave as I clearly wasn’t in a fit state for home. I could hardly walk, I looked worse than when I came into hospital! Then eventually they came and helped me, and I was kept in, admitted up to station 4.

I am under Neurology, yet it took two weeks for me to be seen my someone in neurology. I asked multiple times to be moved to another hospital where it would have been better for me as I had a previous bad experience where I was left in a side room for 3 weeks at Ayr hospital due to lack of neurology presence and doctors being unsure what to do with me, and was refused. I was bed bound, could hardly move from the pain, from the leg weakness, low pressure headaches, and felt I was just abandoned. Doctors would come see me and say they were holding off for neurology to see me as it was complex and they didn’t know what to do. So I was just left for two weeks unseen. I knew I had a CSF  leak but also something else going on.

In this time my bladder and bowel function wasn’t the same, and I was struggling physically and it started mentally taking its toll.

Now on to the staffing issues at station 4. Overall they are an amazing and caring team and most I can't fault. They work so hard and are under pressure. But there has been many occasions where I have been mistreated, incorrectly medicated, as well as times I have seen other patients receive wrong medication in the ward by a certain member of staff. I’ve had another staff member shouting at me for going to a different member of staff instead of them, and they left me in tears. I’ve had auxiliary staff just tell me to get myself washed and fling basin down beside me even knowing I couldn’t move out bed independently or sit up well due to possible spinal leak.

When I had a catheter in it was filling up and it  became very uncomfortable hanging down the end of the bed, so I asked if the nurse could empty it as they were beside me anyway, and the nurse said no it can wait a few hours….. well that was around 10pm, and then it was 7am before they emptied it! And this is just some of the things that have unfortunately gone on.

I came into this ward with no mental health issues and now have the mental health team involved to help me, because I am struggling, I am struggling that the NHS is neglecting and letting me down with my medical care. I am struggling with the fact that some nurses can be so lovely and helpful, yet there's some that don't even ask how my pain is, or say hi or seem approachable.

I feel let down that the neurologist I was meant to see, and I waited for over 2 weeks to see, didn't come see me, instead sent someone junior, who didn't seem to read my files and appeared clueless of my back story and has made changes that really have made negative impact on me already.  I feel let down by the NHS for not placing me in the right ward and hospital for my care when requested multiple times. It’s not been fair on the station 4 staff, and it’s most definitely not fair on me. 

How I cope? I am on such strong medication and a concoction of painkillers and other tablets to try help with pain management whilst I wait for scans, tests and wait in a dark room as I can’t tolerate light or noise. It's destroying  me..