I was with my brother in Altnagelvin Hospital N Ireland. My brother is a 50-year-old man with Downs Syndrome. He lives with me and my husband.
My brother arrived at A&E on the advice of GP. He was not responding well to antibiotics prescribed for a suspected UTI. Blood in urine was a concern. My brother was tired and in discomfort on arrival.
A&E wait for admission and subsequent 2 night stay:
My brother was triaged quickly. After 3 hours I approached the desk and was advised that my brother's situation was a category green - others could be seen in front of him. Given my brother's learning disability, potential mental health risk and vulnerable status along with the concern triage staff had about his blood sample, I believe he should have been seen much much sooner. In my view, the category system needs to be reviewed. My brother could not tolerate the wait and was becoming very cross towards the end. He told the Dr that he was very tired and that it was too long to wait.
After this 4-hour wait, a 2-night stay in A&E followed. We were repeatedly advised a bed on a ward was being sought. My brother also needed a scan of his kidney.
My brother had a significant event on the 2nd evening. In hindsight he may have passed a kidney stone. I was advised that the rigor he experienced was a possible reaction to the infection. Early the next morning he was even more unwell. He was very hot, he wanted to go to the bathroom but he was clearly too weak to walk by this stage. He was struggling to hold his head up. The day shift nurse who was new to the situation quickly assessed what they saw - blood pressure becoming dangerously low and fluids needed. Drs called. I am very grateful for this nurse's swift action.
Drs advised sepsis and my brother was immediately taken to the Resus ward, where he was stabilised and had the best of assessment and treatment for a few hours, and then on to ICU. A kidney scan followed that afternoon and then a stent was fitted. It's obvious that I would consider there was an almost fatal delay in getting the proper attention for my brother.
Bed management decision:
My brother's time in ICU was first class. The urology consultant worked late into the evening at short notice and managed what was becoming a tricky surgical procedure. The ICU Dr was a senior anaesthetist who we met in Resus earlier that day. The Dr opted to remain with my brother as they were more experienced and aware of potential risk giving the physiology of Down's Syndrome. They did not want to leave the task to a less experienced colleague. We really appreciated what these two professionals did that night.
The ICU nursing staff were superb in their focus and concentration to detail during the following days when my brother was seriously ill and in the second week as he recovered. My brother was assessed as needing 1-to-1 care, and this was on his notes. This 1-to-1 remained all through his time in ICU even after ICU treatment was reducing ... this due to his vulnerable status. Observations were constant.
On 2 occasions we were advised that my brother was to transfer to Ward 4, Urology. I had linked with the Disability Nurse and they were in liaison with Ward 4 about my brother's needs. Twice it didn't happen at the last minute. My brother was aware of all this and it was unsettling for him. Urology Drs visited ICU daily and continued their monitoring of my brother and effective communication with us. My brother continued to receive excellent general nursing care in ICU and was well settled. Everyone was willing to go over and above to help the situation in the 2nd week.
We were advised that following my brother's final intravenous medication, the plan was for him to be discharged the next day. However, on arrival to visit my brother for the final time at 6 pm, we were advised he would transfer to Ward 31 for 1 night! I felt this was wholly inappropriate at this stage. Having come through so much and been so settled, my brother now had to go to a new environment with new staff. He was still very exhausted.
On arrival, my brother was put through the new patient process. Weight and height (again), even a urine sample. Enhanced observation or additional support had not been planned for. We were advised my brother was down as needing medical observation every 2 hrs 15 minutes.
The prospect of leaving him was too great a risk. It was clear that nursing staff on Ward 31 were left exposed to the lack of joined up thinking and left unprepared for my brother's needs. All the nurses and staff were friendly, attentive and kind to our situation. A more suitable chair was found for my night's stay.
Again my brother's vulnerable status due to his learning disability and potential mental health concerns were given no consideration, far less any reasonable accommodations by the administration in the hospital.
Discharge letter and pharmacy wait:
As with A&E, it took another 4 hours from medical discharge to receipt of GP letter and pharmacy. Again my brother became distressed at the long wait. Wholly avoidable if reasonable accommodations had been made for his situation.
My purpose in retelling the story is:
1.to highlight that the medical teams, who are doing excellent work seem to be let down by systems and administration.
2.to advise that notions of equity (treating everyone the same) over equality (based on needs) is not effective. I believe where there is a need for reasonable accommodations, it can cause harm and put patients at greater risk.
I really hope that future changes can be made for the benefit of others.
"Lack of consideration for my brother's learning disability"
About: Altnagelvin Area Hospital / Emergency department Altnagelvin Area Hospital Emergency department Londonderry BT47 6SB Critical Care / Intensive Care Unit (ICU) Critical Care Intensive Care Unit (ICU) Londonderry BT47 6SB General Surgery / Ward 31 General Surgery Ward 31 Londonderry BT47 6SB Urology / Ward 4 Urology Ward 4 Londonderry BT47 6SB
Posted by polarisxn39 (as ),