I sent a letter to the hospital detailing the problems. I certainly agree about 'Don't leave their side' but I had other obligations so was only with him 2 or 3 hours a day.
The letter is shown below. They took it seriously and promised to send the nurse in question for 'in service training', whatever that means, and deal with the other problems. When he went in for a second knee replacement a year later, in the same ward, they treated him very very well. And it was quieter at night. I think the secret was to be polite but firm in the letter, and to suggest solutions.
^Dear Hospital Administrator
I would like to discuss my husband’s care, while he was an orthopaedic patient at your hospital, from March 27th to March 30th,
He had a total knee replacement, for which he received excellent medical service, and was then transferred to ward 7D, bed 26, where he began to recover as quickly as he possibly could. Many of the nurses were really caring people, but there were some problems.
The first night, a few hours after the operation, he woke up thirsty and needed ice or water, but was unable to reach the nurse call button, as it had been put on the bedside cabinet, which had then been pushed out of reach to give staff easier access to the drip. One nurse did see him to ask if he was OK, but he was unable to answer, as his mouth and tongue were so dry. She went away, believing he was fine. However, this night of thirst turned out to be the least of his problems.
During the stay he remembered just one visit from a doctor (a woman) who showed extreme consternation at the small amount of painkillers he had been prescribed, and immediately changed it on the chart, went away to tell someone about the revised medication regime, then brought his chart folder back. At the next medication time he had to inform the nurse that the medication had been changed – she had not taken the trouble to look at the chart.
Unfortunately, my husband suffers from agoraphobia, which is an anxiety condition that has been diagnosed by a government psychiatrist. This condition is recorded repeatedly in his hospital notes, and we reminded everyone that we came into contact with about it, up until the operation. Because of T’s condition I have a carer’s pension in order to look after him, and I think I would be remiss in my caring if I did not draw your attention to some problems in the ward, that have left him with severe anxiety.
This condition is not something that affects him all the time – he can interact with people most of the time, but when under stress, he becomes severely anxious, needs to be alone, and is vulnerable to panic attacks. Some of the nursing staff were obviously unaware of what agoraphobia entails. When a nurse came to take his blood pressure on Sunday afternoon March 29th and opened the curtains, he asked her to close them, explaining he was having an agoraphobic attack. She abruptly refused, stating she could not see properly with the curtains shut. He insisted, as it was light enough, and he was slowly losing control and heading towards a panic attack. She closed them with much ill-will. He tried to explain about the agoraphobia, but she seemed not to understand. She took his BP and dispensed medication, then ‘flounced’ out, leaving the curtains open anyway.
After this happened he went into a complete panic attack and did the only safe thing he could do: he dragged himself a to the toilet, the nearest small enclosed space, to be alone. On the way he passed the same nurse who was just finishing with another patient: she made some sarcastic comment about being out of bed, whereas my husband suggested she go and find out what agoraphobia was. He does not remember her name, just that she was young, dark haired, and was on duty the Saturday, Sunday, and Monday afternoon shifts, March 28th to 30th.
He stayed in the toilet for a good 15-20 minutes with the light out, and then dragged himself and his bad leg back to his bed, and just sat there bringing himself back under control for about an hour. Although a little empathy, kindness and understanding could have prevented all this suffering, he realised later that during the whole episode, no-one had enquired about his condition.
There have been very few such severe attacks in the past, but to give an example, one at home a year or two ago was once so severe he was rushed to hospital in an ambulance because it looked like a heart attack. The reason for these attacks is unknown, but stressful situations bring them on.
The ward was also very hot and airless, and when he mentioned this to the same nurse, when he was being discharged, she blamed him for having his curtains closed, an attitude which further exacerbated his agoraphobia, especially as he knew he was just as hot with or without the curtains closed.
There is an immense amount of noise during the night. The first night he woke up with a start, at the sound of metallic clanging, and staff calling out to one another. He managed to get back to sleep, then at about 2.30am to 3.00am the cleaning staff came on, and made no attempt to be quiet, banging doors etc. This seems to be an organisational problem that needs to be addressed, because patients need to be able to sleep to aid recovery. He did mention this to the male nurse who gave him his early morning meds: he simply looked down at my husband, and said: “ We’ll see if we can do something about it.” Then he started to walk away, half turned, and in a superior manner went on to say: “You must realise, of course, that these people have a job to do!”, as if banging doors, clanging metal, and loud conversation in the middle of the night, was something patients must endure. In hindsight, the total lack of respect and consideration was hard for my husband to endure.
Another problem with recovery is the severe constipation he has suffered since being in hospital. In the end, I checked online to see if the painkillers could be causing this. I found out that at least one of the painkillers he was given, Endone, an opiate, is known to cause constipation, because their official site warns about this. I rang a local pharmacist and was told he should be taking Coloxil-with-Senna, while taking the painkillers. He has started on Coloxil now, and is bearing the extreme pain rather than increase the constipation, but remains constipated. (April 1).
Obviously this remedial action was not applied on time: he, and another patient in the ward who was also complaining about constipation should have been taking something from the start. But the nurses, when told about the constipation, just said: “Don’t worry about it – it is just the pain killers”.
The first time T actually asked for a laxative, they said ‘alright’ and that was the last he heard. The second time was by the nurse-in-charge on the night shift. She listened to him and promised laxatives, but it was a while later that he got them. She apologised profusely for the delay, saying they had been very busy. One fellow patient went home on the Monday like T did, and had been constipated by then for 6 days. He was given no laxatives. It was only our own online research from the drugs’ official sites that warned us about the link between constipation and painkillers, and the need to take laxatives at the same time.
Most people suffer and say nothing, because the stress of hospitalisation overtakes all other considerations. But I feel you should be informed of these problems, or they will never be addressed. Meanwhile I am trying to get my husband back to normal: I have no psychiatric expertise and struggle to help him effectively, but at least he knows I care, and that is helping him recover.
Right now ( April 2nd) my husband is in extreme pain, still constipated, very irritable, sick, and especially irritable because a call to 13 Health informed him that if after following certain procedures his condition is not relieved, he may well have to go back to hospital. This is something he could not bear right now. In the end, it took Coloxyl with Senna and three suppositories to relieve the constipation.
It is now April 13th: my husband is still suffering from acute agoraphobia, and has had two more panic attacks. Before surgery he had these conditions under control, but now he is unable to leave the house without taking Valium, doing deep breathing exercises, and having me close by his side. He has reverted to the state he was in several years ago, such as waking in the night needing me to help him through a panic attack. Panic attics involve cold sweats, rapid breathing, and a rapid heart beat. He is also still in great pain in his entire right leg.
On April 6th we had to go to our GP, Dr Sucy Mohan, for T to have a check up and to get more painkillers. A friend came to take us there: it took three attempts to get T through the house door. Eventually he managed by staring at the ground and walking between the two of us. On seeing his condition Dr Mohan issued him with further medication to help control the anxiety and agoraphobia.
We were going to try to forget the awful hospital stay, but now the panic attacks are back, and can happen three or 4 times a day, after years of mastering them, which has upset us greatly, and we feel the one nurse mainly responsible for this should be made aware of her terrible mistake in not knowing what agoraphobia and panic attacks entail.
It seems such a shame that the wonderful care and empathy in the pre-operation area, the excellent medical procedure, and the caring kindness of many of the nurses should be spoilt by some bad attitudes, and a lack of understanding of the patient’s other conditions.
In summary, I would suggest the following changes to post operative care:
*Ensure all the nursing staff are aware of patients’ other conditions, and take them into consideration, rather than any staff showing annoyance and distain.
*Ensure immediate post-operative patients can reach the nurse call button, and ensure they have enough water or ice.
*Nurses should check the patients’ charts for changes.
*Consider offering laxatives with opiates.
* Try to get the air conditioning in the ward to work.
Yours sincerely^
