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,

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/

Historically, registering to vote in Ireland involved a trip to the local Garda station to get a paper form stamped. Fortunately, those days are gone, and it is much simpler now. You can register to vote, online, at any time.

Simply go to www.checktheregister.ie and complete your details to be added to the electoral register. You can check the registration and update your details if you are already registered. If you are a first-time registrant, then you complete that form instead.

The details you’ll need to provide are:

• your PPS number
• your date of birth
• your Eircode

These details are needed for your local authority to confirm your details. And that is it! You’ll be ready to vote, should an election or a referendum be called!

Three reasons why your vote is important

1. It gives you a say on important issues that affect you — from roads and recycling, to education and climate change, to housing and employment.
2. It gives you the choice to vote for your local and national representatives, if you don’t vote, other people get to choose who represents you.
3. Elections can be called at short notice — if you don’t register 15 days or more before an election or referendum, you may not be able to vote. It is as simple past that.

Are you a multipotentialite? It certainly seems to me that I am. What is a multipotentialite? Well, it is someone with many interests and creative pursuits, rather than focusing only on a particular subject or hobby. I learned this new word while completing the The Open University‘s 5-hour short course on the value and benefits of Multidisciplinary Learning. As a student on the Open Degree pathway, I found this really helpful as a way to describe the degree course that I am following.

Multidisciplinary students bring many transferable skills to the workplace because of their study, including critical thinking, self-management, adaptability, analysis and problem solving, application of information technology, flexibility, and synthesis of ideas.

Anyone interested in studying this course, can find out more at https://www.open.edu/openlearn/education-development/multidisciplinary-study-the-value-and-benefits/content-section-0?active-tab=description-tab

Throughout my career, I have worked hard to ensure that everything that I do is to the best of my ability and shows my professionalism. Paramount to ensuring this is learning new skills, exploring new ways of working, and revising ongoing skills and tools to complete my work.

This morning, I’ve been looking at professional ethics, particularly concerning my work as a communications professional.

As Richard Bailey, says

Ethics is allied to professionalism. So if you profess to act ethically, then as a very first step you should be able to demonstrate your commitment to professional standards.

Richard Bailey, PR Academy, Briefing: Professional Ethics, 2022-04-04, https://pracademy.co.uk/insights/briefing-professional-ethics/ accessed 2022-01-03

My first step is to have signed up to professional standards. I have signed up to the Code of Conduct of the Chartered Institute of Public Relations, of which I am a Member and Accredited PR Practitioner, also to the Institute of Internal Communication’s Code of Conduct as a Certified Member. I have membership in several professional bodies, and I work hard to ensure that all of my work meets their professional standards.

I can recall a few times when I have been asked in employment to do something which I found ethically questionable. Each time, I explained to my manager why I could not do what I was being asked to do. On more than one occasion, there was a look of incomprehension that I refused to do what was wanted. But, having heard that it was about professional ethics, and after I had explained why I could not do what it was, it was decided that it was not a good move.

Within the Public Relations industry, Patricia Parsons states that there are five pillars:

1. Veracity (telling the truth)
2. Non-malificence (doing no harm)
3. Beneficence (doing good)
4. Confidentiality (respecting privacy)
5. Fairness (being fair and responsible)

They are very good pillars for any role, and they equally work within the Internal Communication sphere of communications. I shall continue to endeavour to hold myself to these qualities in my work. I urge others to do likewise.

One of my roles is to copy edit the ISTC’s monthly newsletter, InfoPlus. Since April, I have also been compiling the monthly blog and podcast round-up. Here’s the info for September 2022:

The CherryLeaf Podcast looks at `the value of retrospectives at the end of a documentation project, and how you can run one.’

https://cherryleaf.podbean.com/e/126-retrospectives-for-documentation-projects/

Elizbeth O’Quinn gives a guide to strong policy writing. `Policy writing can sometimes feel unnecessary, outlining specific rules and requirements that seem intuitive.‘

https://www.instructionalsolutions.com/blog/policy-writing

‘Enter the cheetah.

‘When it comes to competitive advantage, few animals can match the cheetah. Faced with a prey that can run at up to 100kph, the cheetah has developed characteristics that enable it to survive by catching that prey.’

John Mark Williams, CEO of The Institute of Leadership & Management shares his interpretation of agile leadership, and how we can use real-life examples from the wild to develop our own agility skills for the modern world.

https://www.institutelm.com/resourceLibrary/agility-as-a-competitive-advantage.html

‘Take a look in your kitchen. Go on. I guarantee you’ll find copy, and that you’ll see that copy pretty much every day.

‘For me, it’s the packet of tea bags which I go to every couple of hours. And it’s the bottle of laundry liquid that I pass as I walk in and out of the kitchen.’

So writes Megan Douglas about the subtle power of packaging copy on the Pro Copywriters blog.

Our personal health and wellbeing, and that of our friends, family and communities, are important to all of us. However, it’s not always in our control. On The RSA blog, Ella Firebrace and Riley Thorold explain how we might look to our futures and shape, what it means to lead healthier and happier lives, through participatory practices that involve citizens and NHS staff. 

https://www.thersa.org/blog/2022/08/how-can-we-cultivate-healthier-and-happier-communities

Nick Fewings asks: ‘Are organisations to blame for poor leadership and dysfunctional teams’ over on the Association for Project Management blog. 

‘Regularly, I hear of new leaders being promoted into a role due to their technical expertise and not their leadership capabilities. A two-week handover of their old job, followed by a two-week induction into their new leadership role, and hey presto, they’re good to go! It happened to me over 30 years ago and I still have sleepless nights thinking about the damage I did to my team, due to my ineptitude at leading them.’

https://www.apm.org.uk/blog/leading-teams/

If you want to subscribe to InfoPlus, and read other information about technical writing from the ISTC, you can subscribe at https://istc.org.uk/homepage/publications-and-resources/infoplus-newsletter/