Michæl McFarland Campbell

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

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,

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/

I have never really been one for gardening. Even when I was growing up, I think the most successful planting I ever did was of some cress in school. And I think that only worked because everyone else’s did as well. So you can imagine my surprise that in the last month I have been planting some plants in pots in the front garden of our house. 

Now, this may have something to do with living close to a branch of Glanbia’s Countrylife here in County Kildare. Not having a car makes buying plants, pots, and bags of compost quite difficult. Ok, so the buying of them is the easy part, it is the getting them home from the garden centre that has historically been the difficult part. But, as I said, Countrylife is about 500 metres from the house, so there really is now no excuse. Even when there is an item or three that is too heavy, the local store will arrange delivery by a helpful assistant as they did with the three bags of compost. 

The first day that Andrew and I went there, we bought one pot and put three heather plants in it. The next week, I went back and bought another larger pot and put a plant in it. Today, I went bought two smaller pots but in green and put some lavender in one and some “Tickled Pink” dianthus in the other.

All of the pots are from Lemonfield Pottery’s Botanical Gardens range. Unfortunately, Lemonfield Pottery is trade only, but they do produce some lovely pots. I’m sure your local garden centre will be able to source them should you want them. 

But why did I start on this gardening? Well, I had read that gardening can be good for your mental health. It is also good to get out into nature, and living in the countryside I had been noticing more and more of the flowers around us. Wouldn’t it be pleasant to have some close by? So, that is basically why I am doing it. The lavender may also be useful later on in the summer as Andrew really loves the smell of it: it is useful for helping him to go to sleep. Hopefully we can use some of our own to assist. 

Originally posted on HIVBLogger.com.

All haemodialysis machines have tubes that take blood away from the body of the patient and tubes that return the blood after it has been cleaned. For ease of identification, many machines clearly mark these as red (from the body (or arterial)) and blue (return to the body (or venous)). It’s a simple way to ensure that everything is set up correctly.

As a self-care patient, I have the responsibility of setting up my own dialysis machine when I arrive, and then connecting myself to the machine. Up until yesterday, this had gone relatively smoothly without error. However, at the end of dialysis when I went to replace the blue connector onto its holder on the machine, I found that it was in a different place. Yep. I had mixed up red with blue and blue with red.

This mistake, may help to explain why, today, I am feeling so tired. Of course, there may be other reasons like the very busy weekend where I accompanied our Venture Scouts to Wicklow Historic Gaol.

Whatever the reason, I am about to head out with Andrew to Port Laoise to make sure he can find where to get his booster Covid-19 vaccine. It will be about a couple of weeks until I will be able to get my booster, having had a third dose back in October.

By days, weeks, months, and years, kidney dialysis patients learn to live with their thrice-weekly life-saving dialysis treatment. The alternative of not having treatment at all is much worse. Most of us still want to live; so, in order that we might continue to do so, we travel from our home to our dialysis unit three times each week and sit in our chair or bed for anything from 3½ to 4½ hours at a time, so that the dialysis machine can do its work and clean our blood as a replacement for our failed kidneys.

As kidney patients, we have little control in our treatment. We are usually told where we will go for dialysis, what time to be there, and what time we will finish. We are reminded about what we can—and usually what we cannot—eat, and how much we are allowed to drink each day. For me, that is one litre of fluid in the day as I am basically anuric. One litre of fluid is quite quick to mount up if you don’t take a note of what you have drunk, as you drink it.

Historically, I have never been one for knowing my weight on a weekly, let alone daily, basis. That has changed with the renal failure. On arrival to the dialysis unit, the first thing we all do is to go and get ourselve weighed. This allows the nurses to calculate how much fluid we need to remove to return us to our “dry weight”. When this is done, the amount in millilitres is entered into the machine, and off we go.

For most dialyis patients, they come in and everything is done by the nursing staff in the dialysis unit they attend. For most people, this seems to be what they want to happen. There is little patient control on what happens. But there is an alternative. It is possible to take some responsibility for your own dialysis; to take part in some of the procedures that are needed to ensure that dialysis functions well.

Education

When I was a patient in the Midland Regional Hospital at Tullamore, I was fortune to be offered this option. I was educated in how to prepare the dialysis machine, how to set up the trolley in advance of dialysis, how to cannulate myself (put the needles in), and how to take them out at the end. These are big steps that I am sure must seem very scary to patient swho are not used to doing them, and who are used to letting the nurses do all of this.

Doing these parts of the process gave me some control over my dialysis. For me, it is important to take ownership of the treatment. It is not something done to me; it is something in which I take an active part.

For a while, once I was on the twilight shift at Tullamore, I did revert to letting the nurses do most of the process, as it meant that I was in and out in as short a time as possible. But then, in the spring of this year, I changed dialysis uni to the B Braun Wellstone Midlands Renal Care Centre in Port Laoise. I visited one week to see what it was like, and then the next week, my care was switched there. One of the main reasons that I moved was that there is a self-care room built into the unit. I am not using it yet, because it is currently in use as the isolation room for COVID-19, but the plan is that when COVID-19 is over, I will be able to do so.

Typical dialysis day

So, I now have more control over my own dialysis. A typical dialysis day for me sees the following happen on arrival to the unit:

1. On arrival, my temperature is taken, and I take a note of it;
2. I weigh myself, and record that in my notebook;
3. I calculate how much fluid we’re going to take off by subtracting my dry weight from the weight recorded, and adding the Washback. Then I record that in my notebook too:
4. I then check that I have all that I need to cannulate and to come off dialysis:
   • An on/off pack;
   • 3 syringes of saline;
   • 2 buttonhole needles;
   • 1 single-use tourniquet;
   • 1 pair of tweezers;
   • 2 plasters;
   • tape for holding the needles in place;
   • disinfection fluid; and
   • any medication needed.
5. Once I have confirmed that I hae all I need, I wash my hands, and start to prepare the trolley.
   • I open the on/off pack, and lay the “on” pack on the trolley setting the “off” pack to one side for later;
   • I open the “on” pack, and place the sheets of gauze in the top left-hand corner of the sheet, and place the sheet for under my arm on the pillow on my chair;
   • I open the buttonhole needle packs, and allow the needle to drop onto the sheet, then do the same with the saline syringes; and then I put the saline into the needles, and lay the tips of the needles on the gauze;
   • Then I put the tweezers on the gauze, and pour some disinfectant liquid over them, and onto the gauze;
6. I go back and wash my hands again, and wash the fistula, drying both with paper towels, and then get into my chair.

Cannulation

Cannulation follows with taking off the scabs from the fistula access points, then putting the needles into my arm, and securing them in place with the tape. When that is done, it is time to connect the dialysis machine to my arm via the needles.

I ensure that both needles are clamped, before then clamping the arterial line, taking it off the machine and connecting it to my needle, followed by the same for the venous line. Then it is time to ensure that the machine is set with the right amount of fluid to come off, in the right time. Then, when I am sure that all is set , I start the machine.

Medication and records

As a self-care patient, I have the responsibilty to put in the medication that is needed while I am receiving the treatment. Therefore, I have the anti-coagulation medication ready to put in when alerted to do so by the machine, just after starting the treatment. Later on in the session, there may be Aranesp, Venofer, or Zemplar as required. After putting any medication in, I always record that I have done so, and when, in my notebook. I also enter an hourly record of vital stats including: time; blood pressure; heart rate; blood flow rate; arterial pressure; venous pressure; UF rate; UF volume; and whether the machine is in HDF or HD mode. At the end of dialysis, the nurses photocopy the relevant page and put that in my notes. Historically, all of these vital stats would have been recorded by the machine, but since the cyber attack on the HSE, the dialysis machines have not been connected to the internet, so nothing is recorded that way. My notebook is my way of recording it all.

Responsibility and control

It is a simple thing, but taking some repsonsibility for my own dialysis has given me some control back on how the kidney failure is looked after. Before I started do this, I was quite an angry patient. I was very frustrated with some of the nursing staff. But now, I am much calmer, and I look forward to coming into my dialysis sessions as I have things to do.

It is not just in the dialysis unit that I have some control: I also get myself into the unit by using public transport. The sheer exhilaration of walking up from the station to the unit has really helped my mood. Of course, I know that not every dialysis patient is fortunate to be able to travel in this way, but maybe they could have a think about it.

Taking responsibility for my own care has turned the dialysis session from something that used to be a chore into something I enjoy.

Self-care or shared care?

I understand that total self-care is not for everyone. But shared care can be. I urge all dialysis patients that are fit and able to do some of the preparation to do that. Maybe it is simply weighing themselves when they arrive; maybe it is preparing the trolley before cannulation; maybe it is setting the amount of fluid to take off on the machine; maybe it is starting the blood pressure pump. Whatever part of the process that individual dialysis patients can take responsibility for, will give them some control over the whole process. I know from my experience that that can only do good. If you are a dialysis patient, why not talk to you dialysis nurse about having a go at some of this yourself?

Earlier this week I received my EU Digital Covid Certificate in the post from the HSE. I wondered at the time was there a way of registering it on my phone. Fortunately there is. The Irish Covid-19 tracker app has been updated to allow users to scan their QR code on their Digital Covid Certificate and upload that to the app. So, I have done that now.

I have also put it in my iPhone Wallet by following the steps below.

For iPhones, go to the free web app Covid19passbook.netlify.app on your phone’s Safari browser. 

Adrian Weckler, in The Irish Independent, 15 July 2021.

I hope that others will find this information useful. Thanks to Adrian Weckler, writing in The Irish Independent for the guidance on how to do this.

I now look forward to the opening up of indoor dining and international travel once again. Hopefully alongwith my other ID, this will help us all in combating COVID and getting on with life.

So, on Friday, I had created a table for recording particular stats whilst on dialysis. Then a friend suggested that I use a bullet journal to make things easier, so I have done that. I then realised that I had a blank page to the left of my table, and so have used that to create checklist to keep track of my medications. So, let’s see how this goes for the next few days and then I will decide whether to continue or not.

Originally posted on HIV Blogger.

Dialysis, like much of healthcare, is all about numbers. The numbers may be examined on a yearly, quarterly, monthly, or weekly basis. Some are checked hourly during each dialysis session. Usually, these hourly numbers are registered and checked by the computer system and logged that way. However, since the attack on the HSE computer system last month, none of the dialysis machines are connected to the internet to make this possible. Therefore, other methods have to be found.

In the B Braun Wellstone Midlands Renal Care Centre in Port Laoise, the nurses have enlisted my help in recording certain key numbers and observations whilst I am being dialysed. They have their own form that I am to use. However, in order that I have my own record of each dialysis session, I have created my own version in a Leuchtturm1917 B5 notebook using pencil, ruler, and pen.

Although the table in the centre is the table that matches the one that I have to do for the clinic, I have added in other key information for myself including:

• Pre-dialysis weight
• Post-dialysis weight
• UF volume – that is the amount of fluid to take off during the dialysis session
• Nurse – which nurse looked after me
• Temperature (in ºC)
• Medication check list.

I find that having my own record, especially since I self-cannulate now, is very important and helps my own mental health. It means I have somewhere to record things if needed, and can look back over the entries to see how my dialysis is going. Personally, I would urge all dialysis patients to do similar. Even taking the time to rule out the pages helps me, it is a simple but calming task to do.

Originally posted on HIV Blogger.