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"Lack of consideration for my brother's learning disability"

About: Altnagelvin Area Hospital / Emergency department Critical Care / Intensive Care Unit (ICU) General Surgery / Ward 31 Urology / Ward 4

(as a carer),

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: highlight that the medical teams, who are doing excellent work seem to be let down by systems and administration. 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.

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Response from Catherine ODonnell, Acting Ward Manager Intensive Care Altnagelvin Hospital, Acute, WHSCT 7 months ago
Catherine ODonnell
Acting Ward Manager Intensive Care Altnagelvin Hospital, Acute,
Submitted on 02/05/2023 at 17:23
Published on Care Opinion at 17:27

Thank you for sharing your story. Your positive feedback and compliments have been shared with all the ICU team. It must have been a very worrying time for you and your family and we hope that your brother is recovering well.

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Update posted by polarisxn39 (a carer)

Thank you Catherine. I hope my post was balanced and fair. The actions for change are more with protocols and procedures with respect of learning disability patients. I hope that came across. The medical teams, especially yours were fantastic. I can't thank ICU enough.

My brother is making slow progress in his first two weeks at home ... a further chest infection is now clearing up with a further round of antibiotics. We hope for better next week and look forward to our follow-up appointments.

Response from Sinead Gallagher, Acute Liaison Nurse- Adult Learning Disability for Altnagelvin Hospital, Adult Mental health and Disability, WHSCT 7 months ago
We have made a change
Sinead Gallagher
Acute Liaison Nurse- Adult Learning Disability for Altnagelvin Hospital, Adult Mental health and Disability,
Submitted on 03/05/2023 at 13:09
Published on Care Opinion at 13:37

Dear Polarisxn39,

Thank you for taking the time to share your story. This is a powerful piece of feedback about your brothers’ journey through the hospital services. I do hope he is recuperating well at home. As part of plan to improve the experiences of people with a Learning Disability in the hospital setting and educate and support staff there will now be training available to all hospital staff on the third Thursday of every month. This training will focus directly on supporting individuals with a Learning Disability in the hospital setting and the strategies we can implement to ensure the care and treat is compassionate, safe and effective.

The Learning Disability Liaison Service is also working closely with bed management. The Liaison service will now alert bed management of the person with Learning Disabilities admission to hospital. This will hopefully facilitate better communication about the admission and raise awareness about reasonable adjustments that may be required should the patient need to move within the hospital.

If you wish to discuss this further or avail of the Liaison service in the future please contact me on: Telephone: 02871345171 ext. 214491

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Update posted by polarisxn39 (a carer)

Thank you so very much for this response. It is much appreciated. That's exactly what needs to happen.

My brother is recovering slowly and we continue to feel grateful and indebted to the medical teams who acted so swiftly and appropriately when he most needed it.

We look forward to his follow-up appointments.

Response from Colleen Hamilton, Service Manager for Unscheduled Care, Emergency Department / AMU /ACU Altnagelvin Hospital, WHSCT 7 months ago
We have made a change
Colleen Hamilton
Service Manager for Unscheduled Care, Emergency Department / AMU /ACU Altnagelvin Hospital,

management duties

Submitted on 03/05/2023 at 15:15
Published on Care Opinion at 15:15

picture of Colleen Hamilton

Dear polarisxn39

Thank you for taking the time to give us your feed back regarding your brothers time in ED Altnagelvin. I am sorry that he journey he had through our department was a difficult one. You are right when you explain that his time spent in ED was too long, ideally as an organisation we would like all patients to be seen, discharged or admitted within the recommended 4 hour timeframe however this has become an ever increasing challenge to the ED team and the patient flow team to facilitate in Altnagelvin.

Triage enables the nurse to make a clinical decision of a patient based on a series of questions and a quick clinical assessment at triage. Priority needs is determined by these factors. If the patient in triage is vulnerable and needs additional assistance the triage nurse will go and speak to the nurse in charge and try to prioritise a cubicle in ED but again this, unfortunately will be determined by the availability of space within the department and the needs of other patients that may have presented.

In recent weeks we have implemented a frailty score to identify those patients that should be prioritised a bed on a ward when considering allocation of patients. This will also include the clinical need of the patient in the first instance. As a team we often advocate for those patients with a learning disability and we have currently a learning disability link nurse for our department. Sinead and I will link again to see if there is anything we can do to improve the journey for our learning disability patients that attend.

I hope your brother is making a good recovery. Thank you for your feedback it is so important to hear these issues so we can improve the service for better patient access and to facilitate a better patient journey.

kind regards

Colleen Hamilton

Altnagelvin ED Manager

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Update posted by polarisxn39 (a carer)

Thank you. I am reassured to leave future changes with you and your colleagues. The category green status didn't seem appropriate for my brother.

To explain:

My borther is outwardly very cheery and well-behaved ... this is deceiving for staff unfamiliar with his needs, who may think all is well. It can actually put him at a disadvantage. As a close family member I am very aware when he is becoming stressed and he makes it known to us very strongly if he is upset or unhappy about a situation. Waiting and unpredictability are triggers. If he is told something is going to happen ... it needs to happen and reasonably soon. He has no concept of a 4 hour wait.

In medical terms, his compliant demeanour is misleading. He seems to have a very high pain threshold which means symptoms can be missed. He has difficulty reporting symptoms, sometimes agreeing or copying what he hears said around him. He might also deny symptoms in order to avoid a change to what he intended to do that day. That can lead to a crisis.

These features are not untypical of many adults with a learning disability.

All the above, in my view, would make my brother more vulnerable and in need of assistance and I would hope come within the scope of a proposed 'frailty score'.

Thank you so much for your response. It is much appreciated and I appreciate you taking time to explain things further.

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