"My care felt very disorganised"

A month ago, I was admitted to the RAH after spending 9 hours in (A&E) as I was very anaemic with having ulcerative colitis. I was eventually transferred to ward 18 where I felt my care needs and concerns were not being met. My care felt very disorganised as each healthcare professional that spoke to me had no knowledge of what was happening with me and my care plan. My discharge from the ward was unnecessarily delayed by another day and a half due to poor organisation with bloods that needs to be taken (these bloods are meant to confirm I am a good candidate for a new treatment for my condition that is now moderate to severe). These bloods were eventually taken, although a month has passed and I have heard nothing from the hospital regarding my results. I felt very let down by medical professionals caring for me as it is clear I was treated for my anaemia only and not the primary issue (ulcerative colitis) causing my anaemia despite concerns being voiced multiple times by myself and my family. I have since had ongoing issues since my discharge from hospital.

I have voiced recent concerns about symptoms that have worsened over the last year about my cardiac health to my GP. I called my practice for an appointment 2 days ago as my symptoms have worsened recently, to which I was told by the practice receptionist that I would get a quicker appointment if I phoned the following day for an emergency appointment. 

I phoned for an emergency appointment the following day (yesterday) as directed and received a telephone consultation around lunchtime. My needs were dismissed as the doctor stated he would prefer another GP in the practice to call back (same day) to deal with my situation as he has seen me once before and understands my current needs more. I phoned the practice again an hour before closure as the GP had not been in touch. I was told by the receptionist that the news had not been passed on that another GP needed to phone me for my emergency appointment. I was given a non emergency appointment despite no one assessing if this was appropriate to wait for another 2 days and found this very frightening. 

Again, I felt very disappointed that my health needs and concerns were not met and my condition had actually worsened so I was urged by family members to phone NHS24, to which I was told I would receive quicker treatment if I were to wait for my GP telephone consultation in 2 days time. I was made to feel that if I further tried to seek medical attention that I would be an inconvenience. I have a close support network, with my partner working in cardiology, and highlighting that I should receive medical attention for my current symptoms and concerns but I was afraid to reach out to healthcare services again due to my constant dismissal.

Today, I was due to have an iron infusion which I believe is a top up from the infusion I received during my stay in hospital a month ago at the RAH. A nurse from the RAH had phoned me last week to confirm an appointment for this on ward 18 (RAH).If I hadn’t had someone to drive me to hospital today I would have missed my appointment as I was later informed by staff at the RAH (after being directed to 3 different places in the hospital) that my appointment was actually at the Vale of Leven Hospital (VOLH). I felt anxious and worried I would not be able to receive my treatment as I got to the VOLH an hour and an half later than my appointment. Communication has been a constant problem with staff at the RAH in particular and I’m afraid I’m never going to receive the level of care and medical attention I really need to feel like I am in better health and have a quality of life again.

I have felt much worse throughout the day with my ulcerative colitis and symptoms and have tried to phone my IBD nurse allocated to me. Upon diagnosis of my condition, I was urged to phone my IBD nurse if I had any concerns or required advice about medical attention regarding my ulcerative colitis. I have required contact with my IBD nurse a number of times over the last year who has never answered my calls and find this very concerning, particularly when I am in need of medical attention.

I have also had letters by my IBD nurse regarding booking me with Sister Gallagher for a clinic discussion regarding my proposed new treatment 2 months ago and have had no contact since, despite my attempts to chase this up multiple times. As this letter was sent prior to my hospital admission, I believe that if my new treatment had started sooner, that my presentation to A&E could have been avoided due to less inflammation and bleeding in my bowel.

Overall, I feel my healthcare experience has been hugely disappointing and every issue has been completely avoidable, reinforcing the feeling that I have been failed by those that are meant to help me improve my health. I would like to point out that the staff nurses that took care of me each day during my stay in the RAH were outstanding. They were very caring and tried their best to meet my health needs despite poor attention from medical staff. 

I would also like to thank the nurse that took care of me in the VOLH, she went above and beyond just giving me an iron infusion. She chased up all the required information I needed and gave me really useful advice for seeking medical help in the future.