Summoned for screening

Another grey drizzle day. I celebrated and preached at St Catherine's this morning with two dozen others. I think some of our congregation will be going instead to the Confirmation service this afternoon, if not the Ministry Area inaugural service at 'the Res' in Ely. It's been quite a while since I celebrated and preached at this service, and I have to admit that I was nervous. 

There's a difference between ministering to a group of eight, and three to five times that number, distributed throughout the church. How to ensure you don't miss out giving Communion to anyone is the key issue. It helps to maintain a habit of walking a set course around the church each time, so you relax into the routine, but remembering what you did several months ago isn't quite so easy, and that made me nervous. I've celebrated often enough on a weekday now to relax and take the right hygiene precautions automatically now, so most of the performance of the liturgy isn't problematic, it's 'feeding the multitudes' when there are multitudes that I find difficult.

Our special treat for Pentecost Sunday lunch was a large skate wing each, with a white wine mushroom and onion sauce and roasted veggies. The white wine was a Frascati from the Colli Romani spotted on tbe shelf in Tesco's the other day. This was one of the first local wines I ever became acquainted with, back in the late seventies, when for two summers we joined a local Roman Catholic holiday group for a week at Palazzola, the English College summer quarters in a former convent above Lago di Albano. Frascati is the nearby regional capital, and the name of the wine. 

Palazzola has a wine cellar many centuries old with huge barrels of the local brew installed for serving in jugs at meal tables. In those days sulphur fuses were burned in the side opening of the barrel to sterilize the air that was let in during de-canting wine for the day. The wine itself was thin, lemonish with a hint of sulphur in taste, though not, not from sterilizing fumes, it was said, but a legacy of the volcanic soil in which the vines grew. The quality of the wine forty years on is much improved - fuller bodied with a richer citrus taste. It gives Pinot Grigio a run for its money any day, and is great for making a sauce with!

I slept for two hours after lunch and then went out for a walk down to the river. While I was standing on Blackweir Bridge I felt my phone buzz beneath the layers of waterproof and jacket. I wasn't quick enough to catch the call, from the ubiquitous 'Private Number' - it could have been Ashley, but rarely if ever on a Sunday afternoon, so I concluded it was from the hospital about my covid test. When I got home, Clare had fielded another call for me on the landline. 

I am summoned for the pre-op PCR test at a Public Health Screening drive through centre at Whitchurch Hospital Tuesday mid-morning. I'd expected an appointment on Monday given the three days quarantine requirement, but when I thought about it, the quarantine time is essentially a waiting time until the PCR test has been processed. The test wouldn't proceed if I had any covid symptoms, and self isolation is the front line defence against accidental infection meanwhile.

I wanted to know  exactly where the test site entrance is located. I googled Whitchurch Hospital and found that the hospital is marked 'Permanently Closed', and the test centre isn't tagged on the map. Disconcerting to say the least. Google same up with a year old news item relating to the opening of a screening centre on the old hospital site, which was reassuring. It's supposed to well signposted, but only when you get there, if you've gone to the right road to start with. The directions Clare received could have been a more helpful as the call handler presumed your acquaintance with the place. Something specific like a post code for the current site entrance or a street name would have been helpful. It's funny the way people tend to assume you know a place, without checking how familiar you actually are with the area.

This evening my sister June alerted us to a music documentary programme on BBC Four about guitarist John Williams. It was showing while we were eating supper, so we watched it on iPlayer following this week's episode of 'Call the Midwife'. It followed him from his emergence as a teenage classical virtuoso, just about the time I started grammar school, right through to a recent interview for the documentary. He turned eighty last month. 

In old film and video footage it portrayed his career as the consummate classical recitalist, recalling his phase of duetting with Julian Bream, his exploration of Jazz with John Dankworth and Cleo Lane and his fusion super-group Sky in the seventies, whose first LP album we bought in those days. Perhaps the best footage in the programme was a hilarious duet in which he played straight man with comedian Eric Sykes. They don't make them like that any more. 

Williams was an inspiration to me when I was a youngster trying to teach myself classical guitar. I regret not having the determination and persistence, even more than the opportunity to learn properly the music I loved. There were so many other demands and challenges to be faced when I was young. Guitar playing was always part of my life and used during my ministry in many different settings. I play rarely now that my hands and wrists are stiff and rheumaticky, but just holding my guitar brings back so many memories.

Hostage to medical mismanagement

I spent yesterday evening, and early Monday morning researching and writing a complaint to send to the Local Health Board's Concerns team. Telling the full story from December 2017 until Friday last, involved a lot of cross checking between my diary and this blog. In the end, I had a four page A4 document ready to email. The aim of writing this blog over the past nine years has been to tell my story of retirement ministry and getting old. Over the past year, health concerns have figured more than I could possibly have anticipated, given how blessed I have been with good health and reasonable fitness, even now. I could never have anticipated first hand experience of the breakdown of NHS service provision due to such administrative chaos. I'd love to be able to share this with a journalist and raise public debate about what justice means in the way resources are distributed.

By ten o'clock I emailed my complaint to the Local Health Board Concerns Team and immediately received an automated response. Attached to it was a complaints form and information leaflet. Only much later in the  day did I notice this, but didn't have the energy to deal with this. After lunch, I walked to the Cardiff West constituency offices of our two excellent local assembly members, Mark Drakeford the new First Minister, and Kevin Brennan. I delivered two print copies of the complaint for the attention of the First Minister and the Deputy Health Minister Julie Morgan, who represents Cardiff North. This was done on the recommendation of my friend Roy Thomas, who knows well their interest in health issues as a result of his advocacy work on organ transplant consent. I doubt if my concern is unique. I'm hoping it's well expressed and detailed enough to contribute in a small way to any enquiry into the systemic failure of UHW's administration. Something has to be done.

Conversations with sister in law Ann and my sister June, not to mention Clare all focused on trying to persuade me to seek private surgery in order to finish off the work in progress as soon as possible as it is taking a toll on me and should not be delayed any longer. I hate this prospect. It's feels like giving up on making public medicine as good as it should be, as well as an un-necessary outlay of money. I can sue NHS Wales for negligence and maybe cover the cost of treatment, but there's no guarantee I'd succeed, and every possibility that it would take a long time and be very stressful. Sure, I'd relish a fight to achieve something good, but with my years on earth running out, am reluctant to expend energy on this when there are so many other things I still hope to experience.

After mulling it over, I decided on a tentative first step. I found the contact details of Mrs Cornish the surgeon who's been treating me on the website of The Spire private health care. Before turning in for the night, I wrote to her to ask if she was aware of what was happening, telling her that I have lost confidence in the ability of the system to deliver the desired outcome, asking if she would be willing to take me on as a private patient under The Spire. I have no idea if this will work, or if I will get a response, but I feel I have to take seriously what three people very close to me are saying.

I woke early this morning with all these things going around in my head, feeling tense and unwell. Later, I had a beginnings of a nosebleed, checked by blood pressure and found that it was 180/82. When I took it last Thursday before the awful appointment news arrived it had been 132/70, as it has been now for several weeks. It's the cumulative impact of coping with finding myself trapped, a hostage to failing medical hegemony.

At lunchtime, I visited my GP surgery and asked the practice nurse to check my blood pressure and make a formal record of it, having told her what had gone on recently. Later, one of the GP team on duty listened to my story over the phone, and took notes, promising to write to Mrs Cornish and ask if she knew what was going on. I was pleased and relieved to get this much done in a short time, even if the response arrives lot later. Then, just before five, I had an email from a person at the LHB Concerns team in response to my complaint submitted. Not a robotic reply, but acknowledgement from a real person that an investigation is now under way.

Hopefully this will bring my blood pressure back down into the region where the doctors no longer frown at me.

Starting today, a team of builders are going to be chipping the old and cracked rendering off the back of the house, and applying a fresh coat. This is going to take more than a week, and initially promises to be very noisy. There are three other houses in our neighbourhood having the same thing done right now, while the weather is good, and we often hear the nauseating sound of power hammers vibrating along the walls of our terrace. It's surprising how far the sound travels. Well, sorry guys, but now it's our turn to be a nuisance for a while.
   

  

Another appointment shock

First this morning a clinic appointment for Annie, one of the nurses who has seen me numerous times over the past six months, to check the wound, as had been recommended by my GP earlier in the week. Whilst in good condition, nearly closed and infection free, her opinion was that the over granulation problem was related to the continuing presence of the Seton's suture, not that its purpose in draining the wound has been fulfilled. All the more reason for the surgeon to be asked to remove it soon and complete the job.

Then I went into town for a meeting with Ashley and the Director or our radio equipment supplier about concluding our business with him. This is indeed a complex affair and it's hard to see how it can be achieved within the time frame remaining to us before winding up. Nothing is simple in this fast changing world of advanced technology, where things can lose their value and utility very quickly indeed.

I returned home at lunchtime to find a letter from Llandough outpatients department informing me that the appointment recently re-scheuled from 19th September to 8th August has been re-scheduled again for 8th January 2020. I was told after asking the LHB Concerns team to trouble shoot my appointment problem only fifteen days ago, that I was to be seen by Mrs Cornish the surgeon on 8th August prior to booking a third operation. This came as such a shock that I was overwhelmed with distress and thought I would collapse. If my blood pressure was still as high as it was last autumn, I could have had a stroke or a heart attack following inexplicable news like this.  

The increased pain from the wound this past week has been bad enough, and now this. No personal communication and no explanation, exactly the same as occurred last December when my first scheduled operation was cancelled, and this performance repeated in March before the second operation. Three times running is inexcusable. 

I straightaway called the Cardiff and Vale Local Health Board Concerns team hotline, explained what had happened, and stated that this time I am launching a formal complaint procedure against the hospital administration, on account of the extreme anxiety and distress such incompetent case handling is repeatedly causing.

Just after I made the call, in which I received a promise that it would be dealt with after the weekend,  Roy Thomas called, to re-organise our catch up tea time session this afternoon. We haven's actually seen each other since he was appointed a bio-ethics Professor of Swansea University a couple of years ago.

When I told him what had just happened, he laughed and said he was currently with the family of a kidney patient whose case was being mismanaged in exactly the same way as mine. He spends significant amounts of time wrangling with the health authorities over obtaining examinations and treatment for patients who are chronically ill. It's easier in third world South Africa to get to see a specialist than it is here he said. 

Health service administration in Wales is running in a state of competitive chaos. Having to campaign to obtain the medical services the NHS is there to provide for all citizens is an indication of a sickness endemic in the system itself. It can be brilliant in managing crisis care, and innovative treatments for cancer or heart surgery, but ends up neglectful, de-priotitising minor routine systematic surgical treatments, extending the suffering of many more patients with non prestigious ailments. No account is made of the waste of resources on extended nursing care and support for those waiting for or recovering from treatment, due to endless delays due to mis-management.

Anyway, it was good to see Roy again at home, late in the afternoon. He's been out of the country a lot in recent years, and now that his time as CEO of Kidney Wales is ended, he's looking to a future in which his pastoral and advocacy skills on behalf of seriously ill people can be put to use in a new context. It's marvellous to know that a high standing medico legal professional has his heart set on caring for those in such dire need.

On the warpath again

I woke up very early, half past four, fretting about not hearing anything more from the surgeon's secretary about what's supposed to be happening, despite my repeated requests for information to help make sense of two forthcoming appointments, and being given the impression that something needed to be arranged 'urgently', eleven days ago. So I decided it was time to launch a complaint procedure, and spent a couple of daybreak hours itemising the past few weeks of communications, which it was impossible to make sense of. By breakfast time, an email had been prepared and sent, with an auto-reply received. How long will this take I wonder?

This is Owain's actual birthday, and he arranged to go out with his long standing friend Anna on a day trip to Burry Port, a favourite spot of his on the Costa Carmarthen. Later we saw his photos on Instagram.

I had to return to bed to catch up on sleep after my early start, and wasn't fit to do much until the evening, when I managed a good long walk, and some photos of a juvenile grey heron exploring the best spots for fishing, down below the bridge at Blackweir. The older birds know the terrain. They just turn up and stand still for hours contemplating the water, hardly ever moving. In comparison the younger is almost fidgeting down at the water's edge. Fascinating.

  

Family celebration in view

It's my sister Pauline's 90th birthday today. I rang her and sang Happy Birthday to her and we talked for half an hour. She's as lively and engaging as ever, coping with the ailments of ageing but young in spirit still. Friday coming, Clare and I travel Weston super Mare and stay a couple of nights. On Saturday, there's a family birthday lunch for her. Owain, Kath, Anto and Rhiannon are coming to join us, and stay overnight Saturday. It will be my first outing from Cardiff in six weeks, and a bit of a logistic challenge, in terms of wound care. I told the nurses about this, and we'll be kitted out with three days worth of medical supplies to see us through.

While I was out at the clinic this morning, a phone call came through for me from someone higher up in the UHW admin team, wanting to talk to me about my appointment concerns, so clearly the phone call to the Local Health Board hotline on Friday last has produced a result. I was asked to brief the admin supervisor about my situation in haste, as she was about to go into a surgeon's team meeting. I explained what I needed to know, and asked if I could be put n touch with the surgeon who would be accompanying me for subsequent outpatient appointments and procedures. Would it be Mrs Cornish again, or would it be the team leader who delegated the first job to her? No answer was forthcoming but she promised to ask.

Well, that's one small step forward, but until I know where I stand, I shall continue to wake up at four in the morning and lie awake wondering and worrying for an hour - and pay for it later in the day when tiredness creeps in again. It's been like that for the past several days.