Food for Thought

Last week Marc and I were invited back to Warrington Hospital for the ‘Big ITU’ day, where the Intensive Care staff get together to discuss their progress and work on strategies to improve their performance over the next year. It was quite an eye opener for Marc and myself to hear some of the talks, where doctors and other staff members discussed the facts and figures involved in the running of the busy ITU department, especially when they began to talk about the ethical decisions which they have to make on a daily basis. On the one hand it was strange, but on the other, the many different targets that hospital departments are required to meet and the areas for improvement they have to identify was very familiar. In fact it seemed scarily similar to the sorts of meetings I am used to in the teaching profession.

Thinking about the ITU almost as part of a huge business, which has to function as effectively as possible, taking elements like an ever-reducing budget and a finite number of beds into account, seemed so alien to me. As a previous patient and relative of the ITU, and having on the whole received nothing but exceptional care from the department, it seemed odd to consider Marc as simply one of a massive number of patients passing through ITU on an annual basis. It saddened me that so many of the frustrations being felt by the doctors, nurses and physiotherapists were linked to budgetary concerns, and I know that they all felt they would be able to do their jobs and provide better care if they had more money to spend on extra staff, new equipment and better training.

Overwhelming

They were so welcoming to Marc and I. It was a truly moving experience, to be greeted so warmly by so many of the faces we remembered well from Marc’s time on the ward. There were nurses who had come off night shifts and stayed specifically to hear us speak, doctors who had come in on their day off, and physiotherapists who had taken a break from their usual ward round to come and say hello. The ITU Matron and Educator introduced Marc, and despite him having rehearsed his speech many times at home, he almost broke down before he could even begin talking. I think it was overwhelming for him to see so many of the people who had been responsible for saving his life sitting there in front of him, waiting for him to speak.

And I was so proud when he cracked a joke about not even getting through the first sentence of his talk before crying, pulled himself together, and managed the rest of the speech brilliantly. He is an entertaining man to listen to, and despite recapping what we know is an incredibly distressing story, he managed to make his audience laugh several times throughout his talk. My favourite part was when he spoke about the origins of the word ‘inspiring’, which actually means ‘to inhale’, and credited the ITU staff with literally and figuratively breathing air back into his lungs when they slowly but surely brought him back to life. They, he said, were the ones who deserved the title of inspiring.

A hard act to follow

After he spoke, one of the doctors thanked him and then it was my turn. Marc was a hard act to follow, and I’m certainly not as funny, but I tried to keep to my remit: letting the ITU staff know what they had managed to do well from my perspective as a relative who had spent a lot of time on the ward, and mentioning a few of the things which I had found particularly difficult during Marc’s stay. Afterwards, I answered a couple of questions, which showed that the staff were, as ever, striving to know how they could make things better, easier for the patients and relatives visiting the ITU.

Then they called for a break. We got the chance to talk to people: nurses, doctors, physiotherapists, who had known Marc while he was in the ITU, or heard about him, or were simply interested in his story. The doctors and matron said that listening to us would be the most powerful part of their day, because all the facts and figures in the world were nothing compared to the real life story of a patient and relative who could give insight into their own experience of the ITU. It was likened to asking the customers of a supermarket what they wanted from their store, and they said they would certainly ask other patients to speak in the future.

A real insight

What I enjoyed the most about the day was the feedback we got from those who had listened to us, who knew Marc well, who were thrilled to see him looking so good now. Several of the nurses and doctors talked about reading this blog, which was lovely. One said she had never imagined what it was like for a relative of a patient in ITU to have to consider their loved one, at the same time as keeping things running outside of the hospital, for the children back home. She said it had given her a real insight into how the relative of a patient might be feeling, when previously perhaps she had only been aware of the feelings they might have had concerning their sick relative in the ITU.

Another person I spoke to was one of Marc’s physios, who said she had showed one of the posts about her to her mum. She said it had made her mum so happy because it gave her a real insight into what her daughter did and how much she helped people through her job; that she was extremely proud of her daughter when she read it. Another of Marc’s physios was glad we were there on the day as proof of how essential it is for them to use instincts in their job to help them understand what a particular patient needs at a specific time, even if what is needed does not fit with what the manual suggests.

A large part of my speech focused on how important instinct is in any kind of medical role. Understanding how a patient or relative is feeling, having empathy, knowing when to be tough and when to offer sympathy or a shoulder to cry on is vital in my opinion. And I wouldn’t have changed most of the things about the way Marc and I were treated in the ITU. At a time when most people are crying out that the NHS is in crisis, I think it is so important to celebrate what is being done well in our hospitals.

Dedicated professionals

One of the doctors said how important it was for staff to hear what Marc and I had to say at a time when morale was so low within the NHS. And listening to the talks about budgeting and bed shortages, how decisions are made about which patients are admitted to the ITU and which they simply don’t have room for, it made me worry for the future of the NHS. I don’t claim to be any kind of political expert, in fact I actively avoid political discussions as often as possible, but it seems to me that we have a Health Service filled with dedicated professionals, none of who went into their chosen profession for the glory or the financial reward, who are constantly having to make more and more difficult decisions about how they spend their ever-reducing budgets to best serve the needs of their patients, the numbers of which never decrease.

I’m not sure what we can do about it. I only know that if, on that fateful night in 2014, the NHS had not existed, if it had not been given some kind of budget, if that budget had not been cleverly managed to create the ITU at Warrington Hospital, if it had not been utilised to train all of those amazing professionals to work in it and stock it with the relevant lifesaving equipment, then Marc might not be here today to give his talk. And he is only one example of one patient of the hundreds that go through the ITU in a single year.

And that is definitely food for thought.

Independence Day

As time went on, Marc became used to life on A5. He knew the sisters, nurses and support staff well, and began to adjust to the lack of instant support which he had received in ITU. It was probably good for him to have to wait for a nurse to answer his buzzer and attend to his needs, as in the long run it forced him to do things for himself which he had previously believed impossible, but I know he still felt incredibly trapped and frustrated. It meant that something an ITU nurse would have taken care of in a matter of seconds, could now take up to half an hour to sort out, as he had to wait until a ward nurse could spare the time to help him out.

Alongside Marc’s ongoing physio, he still had many other things which he needed assistance with. One of these was a catheter. The staff in ITU had tried on several occasions to remove this prior to him leaving the ward, knowing that life would be a bit simpler if he could just manage that one tiny thing for himself. Not that he would have been able to hop out of bed and visit the bathroom by himself of course. But knowing that he could have managed a bed pan would perhaps have made him feel a little less of a burden, as well as giving the busy nurses one thing less to do.

A prolonged wait

Sadly, the attempts at catheter removal were unsuccessful. Every time it was taken out, the nurses waited to see if Marc’s bladder function would kick in and start working again. And every time, they were disappointed. Marc would feel the need to urinate, but simply couldn’t manage it independently. This was just another example of a part of Marc’s body which would take a little more time to recover its usual function. It sometimes felt as though the trauma of the initial emergency had caused all of Marc’s different organs to forget how to perform their job. Only time would jog their memories and remind them of what they were supposed to do.

When a catheter is removed, there is a sometimes prolonged wait to see whether or not the removal has worked. The nurses have to monitor how much liquid is collecting in the bladder and, when that amount reaches an unsafe level without the bladder being emptied independently, the catheter must be re-inserted to relieve the pressure. Otherwise, the patient’s kidneys and bladder can suffer permanent damage. In this case, the catheter will be retained until the doctors recommend another attempt at removal. And Marc’s bladder had gone so long without completing its usual function that it didn’t know what to do. Whilst this in itself was annoying, the removal and reinsertion of the tube was extremely painful, and Marc became increasingly depressed every time the procedure failed to work.

Not pleasant

Marc also had his ileostomy (or stoma) bag, which also required emptying on a regular basis, even though he wasn’t managing to eat huge amounts of food. Often on A5 Marc was left waiting for a nurse to empty either his catheter drainage bag or his stoma bag. Whilst this wasn’t particularly uncomfortable for him: the catheter bag was simply attached to the side of his bed and the stoma bag lay taped to his stomach, if left too long, the bags ran the risk of becoming overly full and leaking. Not pleasant. And I am not in any way blaming this lack of attention to Marc’s needs on the A5 nursing staff. They completed their rounds and attended to patients’ needs as often as they possibly could, and would never have simply left a patient waiting for something while they idly chatted with a colleague. No. There just weren’t really enough of them to get around all the patients as often as they needed to.

In general, one nurse was in charge of two bays of six beds: twelve patients in all. They did have auxiliary staff to help them out, but certain jobs can only be completed by qualified nurses, and they had a huge lists of essential tasks all waiting to be completed at one time or another. Completing the usual checks: temperature, blood pressure, heart rate and so on. Sending several patients per day down to the relevant theatre to have their operation and managing them on their return. Dealing with consultants, doctors, physiotherapists, dieticians, all trying to do their own rounds and work with the different patients. Doling out correct dosages of the relevant medications, which was another thing Marc often had to wait for. It was no wonder they didn’t manage to get around to emptying a patient’s stoma bag quickly enough sometimes.

Inconsolable

All of this came at a time when Marc was still really only just coming to terms with the idea of having a stoma. He had been told of its existence whilst he was in ITU, but with so many other things going on at the time, I don’t think he really took it in initially. His brain had to process the different things which had happened one by one. Then one day towards the end of his stay in Intensive Care I came to visit to find him incredibly distressed. When I asked him why, it turned out it had just hit him what having a stoma bag truly meant, and the potential long term prognosis of it. I will never forget that particular day: he was almost inconsolable and I didn’t really know what to say to him. I was mightily grateful for one particular ITU nurse that day, who I know had supported him above and beyond the call of duty as he poured out his heart and all his concerns to her. His physio Jo was also very practical, and talked to him realistically about how many people managed a stoma bag easily as part of their day to day existence without anyone even being aware of it.

Once he was on A5, Marc was far more aware of the need to attend to the bag. Prior to that I think the ITU staff just emptied it without him really understanding what was happening. On A5, he was able to consciously witness the emptying and changing of the bag, but it still took him quite some time after that point to fully come to terms with it. Whilst he had been assured that eventually he would be able to manage the stoma by himself, at this point he still felt incredibly overwhelmed by the idea. The fact that it was sometimes left until it was overly full and then leaked only increased his alarm at the idea of managing one full time when he eventually returned home.

Potentially life-changing

I think patients who are aware that they are having surgery and will have a stoma inserted have the time to adjust to the reality of it. In Marc’s case, he simply woke up one day after surviving an extremely serious illness to find many different things had happened to him, completely without his knowledge. He had to learnt to deal with each one in turn, and the stoma was one of the last things to register. And it was potentially life changing and drastic. In the long run, he did adjust very well to it, but those few weeks in A5, it felt like another insurmountable obstacle to be overcome. And for someone who is weak and pretty much confined to a bed all day, the idea of confidently coping with an ileostomy bag was an incredibly difficult one.

Like the physiotherapy, I was unaware of most of this going on. During our visits the nurses stayed away, taking advantage of the busy ward, patients occupied with their visitors, to catch up on tasks which were neglected the rest of the time. But the reality of life on a general ward was that the nurses did not have sufficient time to deal with each patient’s needs fully. During our visits Marc would tell me about his day, about how long he sometimes had to wait for things like his medication, or his pillows to be adjusted, or his catheter bag to be emptied. And after witnessing the utter brilliance of the NHS during an extreme emergency it made me incredibly sad that, in the day to day running of the wards, the NHS staff were unable to provide the same standard of excellent care.

Frustration

Despite the fact that people on the wards were ill, because they weren’t desperately ill, they would not be afforded the same level of care as someone in Intensive Care, simply because there were insufficient staff available. I knew that the nurses on the wards would have loved to be able to spend sufficient time caring for each individual patient, but the lack of staff, lack of time, lacks of funding meant that they couldn’t. And it made me think how tragic it was for these wonderful nurses, who were barely spared the time to give out drugs, let alone spend time actually talking to a patient and finding out what might be wrong with them. Like they were missing out on the part of their job which probably made it worthwhile.

However, Marc’s frustration over the lack of nursing staff available to help him definitely did him a favour in the end. With all the issues he had been trying to deal with in ITU, he had become extremely dependent on the nurses, and it occasionally concerned me that he didn’t seem to want to do things for himself. Being on A5 meant he had to try, and forced him to start doing things which he had previously not believed he was capable of. When in ITU the nurses would probably have taken care of a particular issue without a second thought, he now had to consider that he might just be capable of managing himself. And eventually, through necessity, he began to build his physical strength and restore his belief in himself.