Michæl McFarland Campbell

In June 2022, I highlighted some accessibility issues at Iarnród Éireann lifts, particularly on the Port Laoise line from Dublin Heuston. I am very pleased to confirm that these difficulties have been resolved. It seems that Iarnród Éireann has used the same style of instructions as found at DART stations on this line, too.

Well done to them for doing so, it is just a pity it took as long as it did to be resolved.

The Irish Human Rights and Equality Commission‘s offices wer the venue for the launch of HIV Ireland‘s latest report: HIV-related Stigma in Healthcare Settings in Ireland: Findings from a Collaborative Joint Stakeholder Study by Dr Elena Vaughan of the University of Galway’s Health Promotion Research Centre.

There were two sets of surveys: one for healthcare workers; the other for people living with HIV (PLHIV). There were logistical difficulties in getting the surveys out to the relevant audiences to be completed. However, Elena did manage to have participation from 298 healthcare workers and 89 PLHIV.

Key findings

Some of the key findings were quite shocking:

People living with HIV

44% of people living with HIV report being asked how they got HIV by a healthcare worker.

54% of people living with HIV report having avoided healthcare for worry about how they will be treated by healthcare workers.

24% of people living with HIV report having been told to come back later, made to wait or put last in a queue.

20% of people living with HIV report having been denied service in the past 12 months.

Vaughan, E. (2023). HIV-related stigma in healthcare settings in Ireland: findings from a collaborative joint stakeholder study. Galway: Health Promotion Research Centre, University of Galway and HIV Ireland. https://doi.org/10.13025/ccsj-8336, p. 7.

Healthcare workers

21% of healthcare workers report using special measures that they would not use with other patients.

80% of healthcare workers have not received training in stigma and discrimination.

40% of healthcare workers say they would worry at least a little about drawing blood from a person with HIV.

25% of healthcare workers say they have observed a colleague talking badly about a person living with HIV at least once in the last 12 months.

loc. cit.

Experiences of stigma in healthcare settings

The report details some experiences of stigma in healthcare settings that were experienced by those interviewed by the research team. I know that I recognised two situations that had happened to me.

The physiotherapist said, `I can’t have you in the gym in the hospital because then it will have to be cleaned… so it would be a whole afternoon of no one else being able to use it because you’ve been in.’

Ibid., p.31

and

speaking of nurses using excessive or unnecessary infection control measures…

They came in in what I keep referring to as full body armour – they were in full gowns and masks and hair-nets and everything. And I said, Why are you dressed like that? `Well, because you know your condition.’ … Oh so because I’m HIV positive, you thinkg you need to be in all of this? `Yes.’

Ibid., p. 32

Both of those situations happened in a hospital in the midlands of Ireland. I have complained about them in the past. As the report says, I was able to self-advocate. Yet, the second situation happened even in the last few weeks when I was again there for treatment.

Recommendations

The report makes several recommendations for the future. They are laid out in four different domains: training and education; policy/practice guideline development; and research. I recommend you read the report online and read the recommendations there.

Links

HIV Ireland

HIV-related Stigma in Healthcare Settings in Ireland: Findings from a Collaborative Joint Stakeholder Study

Earlier this week, the module website for K310 Public health: health promotion and health security from The Open University opened. Once the website opened to all students, we could view the learning goals and assignments we have to do over the course of the year. Although it is only one week into viewing the module website, I think it will be very useful.

It is also useful that The Open University now has an app (OU Study), meaning students can read information from their module website on their SmartPhone. This was very useful on dialysis on Friday, as I could carry my iPhone but not a laptop bag after the surgery on Monday.

Yesterday morning I was whizzed down the M4 from Tullamore to Tallaght for 0830 by two helpful ambulance crew from Medicall Ambulance Service. (Being Ireland, one of them I knew from my volunteering in St John Ambulance Ireland. It’s a small world!)

Despite arriving at 0830, it was nearer half past two before I was taken over to the IR department. Only on arrival there did I learn what IR meant—Interventional Radiology. 

Throughout the procedure I was awake though somewhat sedated. I found it interesting being able to see inside my arm as the consultant worked to clear the clot. Despite doing so, it was decided that the fistula was unusable for ongoing dialysis. Therefore they proceeded with replacing the temporary catheter in my chest with a permacath. 

I must thank the team who worked so hard to achieve the best possible outcome for me. In the midst of it all yesterday it was hard to see it as anything other than a terrible outcome. But, it really isn’t. The permacath means that I can continue to receive the lifesaving dialysis I need. 

After the procedure, I had to be observed on the ward for four hours by which time it was too late for me to transferred back to Tullamore. So, I understand that to be happening in time for dialysis at 1400. 

Thank you to everyone who has sent thoughts and prayers. It is very much appreciated. 

Despite being in Osborne Ward after which Liam the #dialysissupportbear is named, the bear is still in Tullamore. I’m sure he will get plenty of cuddles on my return. 

It’s been a relatively quiet day in the hospital today. With no visitors, it has meant that I have had to find other things to do. This morning I attended a church service online via Zoom. They were talking about Christian meditation. It was great to hear them mention the Jesus Prayer,

Jesus Christ, have mercy on me.

Now, I know a slightly different version:

Lord Jesus Christ, Son of God, have mercy on me a sinner.

At the end of the service, in the general chitchat, I mentioned that it is possible to use this prayer when walking, think of particular people and their intentions, or pray for the neighbourhood where you find yourself. I first heard this idea from Fr Richard Peers, now Dean of Llandaff.

Today, while feeling pretty miserable for myself, I took myself off for a little walk (only within the confines of the hospital). But I found myself praying the Jesus Prayer as I walked and later as I sat in the Healing Garden. I think it helped me. I hope it helped others too.

Perhaps you will try it yourself. Tell me if you do.

Originally posted at https://hivblogger.com/2023/09/10/sunday-in-hospital-feeling-low-but-also-feeling-good/

Just as I thought we were getting over the rollercoaster of the viral load being or not being undetectable and the change in my antiretrovirals to treat the HIV, there was another lurch in my medical treatment.

Last Wednesday, I attended my usual dialysis clinic as normal. Except that nothing was normal. I think we nearly had every nurse present around my bed as we tried to cannulate the fistula. I tried, I failed. The nurse assigned to me for the day tried and failed. The clinical nurse manager for the unit tried — and yes — he failed as well. Another nurse attempted the seemingly impossible and yep, he failed too. The blood was clotting very quickly in the fistula.

Having had about ten different needles in my arm that day, we decided collectively to leave it until my normal dialysis day on Friday and attempt again. The only difference being that I was asked to arrive in time for the morning shift at 8 am rather than my usual time of 1 pm.

And so it was on Friday morning, after a wonderful day out on Thursday with a friend visiting ancient monastic sites around Drogheda, I got up really early, caught the green bus from Monasterevin to Port Laoise, and walked up to the B Braun unit.

Houston we have a problem

I walked in, and my nurse wanted to scan my arm before we tried to needle it. When he did that, it was quite clear that we had a problem. There was very clear stenosis in the fistula. This meant that there would be a complete change of plans. I have to say a big thank you to the teams both in B Braun Midlands Renal Care Centre and the Midlands Regional Hospital at Tullamore as they worked together apparently seamlessly to coordinate my move to Tullamore for the somewhat inevitable procedure.

As soon as I knew I was going to Tullamore, I asked Andrew to come to Port Laoise so that we could arrive together at Tullamore. I had a feeling that I was going to need his support. I was right.

We arrived in Tullamore and were pretty quickly ushered into a treatment room that even I had not been in before. It was still in the dialysis unit but new to me. A nurse rescanned my arm and confirmed the stenosis. I’m not quite sure in what order everything happened, but I know I got food for lunch, Andrew went out for lunch in Tullamore, and a doctor put in a temporary catheter in my chest as the access to ensure that I got dialysis on Friday.

Back in December 2018, when my kidneys failed, I got a permacath put in, I have no recollection of how or where that was done. This time, I was definitely awake throughout the procedure. Liam, the dialysis support bear, was also allowed to be beside me. Feeling his left foot was one of the most comforting things I have experienced in a long time. I know that sounds daft, but that is how it is. Liam comes from Andrew, because Andrew can’t always be with me. But because Liam was, Andrew was there too. Well, in spirit anyway.

After the temporary catheter was put in, I then had four hours of dialysis as normal. It felt very strange to return to having the blood coming out from my right-hand side rather than my left.

Today’s activity

Today, Andrew and our friend Miriam came to visit me. This also meant that I definitely had all the new medication with me. This morning, before they came, I had another shorter dialysis session. Originally planned for two hours, so that I could leave and play for a wedding… (no, that madcap plan was vetoed by the bride)… we actually ended up with me doing two-and-a-half hours. For those who like numbers,

TeKt/V	TBV	TSV	ΔBV
0.92	46.2	9.9	-0.4

Final results of dialysis session on 2023-09-09.

Today was not the most successful dialysis session, but it was about an hour shorter than is normal. But if we estimate the TeKt/V it probably would have been 1.28 which is just over the target of 1.2.

Next steps…

Tomorrow will be a relatively quiet day, I hope. Andrew won’t be in – trains are too difficult to negotiate from Monasterevin, and I don’t really expect to see any other friends either. From midnight Sunday/Monday, I have to be fasting as I have to go to Tallaght University Hospital (back where my first dialysis was) by ambulance transfer so that the team there can have a go at repairing the borked fistula. There are two possible outcomes: firstly, they repair the fistula and it works, the temporary catheter in my chest can be removed; or secondly, they cannot repair the fistula and the temporary catheter in my chest is removed so that a new permacath is put in. Either way, my consultant here reckons that I will be going home out of hospital on Tuesday.

It has been a rough few weeks. I really wish that everything just went according to my idea of the plan. However, I suspect that God has other ideas, which is why everything has gone the way it has. And at some point, I should be getting new books for my next module with The Open University on Public Health.

Originally posted at https://hivblogger.com/2023/09/09/another-week-of-more-challenges-on-dialysis/