Chipped the car out of the ice at about half past seven on a crisp saturday morning and set off for the train to London. Knowing that the usually punctual and reliable (!) railway system occasionally has problems at the weekend, I caught an early train; if the NHS was going to be kind enough to see me on a saturday, I figured it would be rude to turn up late.
Minor glitch on the jounrney, but I arrived at UCLH in good time and, thanks to a very helpful security guard, found my way to Podium Level 2. Intriguingly, the "Podium" turned out to be what I would call an Atrium; perhaps someone made a mistake when the building was put up in 2005? At any rate, everything was clean and shiny, and the lifts worked.
Into a waiting room which contained: a reception desk, complete with receptionist, who booked me in with a smile; several vending machines in case anyone arrived with a coffee deficit; 28 chairs, neatly arranged and a vase containing some very fetching plastic tulips (they looked better than you are imagining). One thing missing. Come to think of it, there were quite a lot of things missing.......no-one else there. I was not used to such choice, so hesitated before choosing the chair that I judged would give me the best warning of anyone approaching.
Bang on 10, a young woman in green arrived and introduced herself as my radiographer before leading me off to the imaging department. I will not bore you with the details, but she was very efficient, quite chatty and obviously knew her stuff. Unlike Medway, when I asked about potential side effects of the two substances she would be administering, she was able to answer both accurately and with confidence.
Into the machine, and away it went.............30 minutes of the kind of percussion that I usually associate with raves (not that I have any direct experience of such things!). Job done, unhooked from the intravenous line, and off I went. By 10:50 I was back out on the street and heading for a quick bit of shopping before catching the train home.
If only this was the standard that the NHS could achieve across all its services..........but then UCLH is a well funded London teaching hospital. It is fairly easy to see where all the resources have gone; the power of the medical establishment, in its narrowest sense, remains pre-eminent.
Nothing much happening on the hospital front until 7th January now. Hopefully the Prof and I will be able to agree a treatment plan at that meeting and things will start moving. Only 5 months since the journey started................
No song tonight. In its place, I thought that those of you who have never experienced and MRI scan might enjoy a short clip of the sounds that the machine makes. This clip is very abbreviated as the scans last about half an hour. To get the most out of this, you need to listen to the whole clip through headphones with the volume turned up as loud as you can bear. The real thing peaks at 120db which is about the same as a jet aeroplane taking off......
https://www.youtube.com/watch?v=S4DHUim_Lc8
Sunday 14 December 2014
Wednesday 10 December 2014
Bonsoir
As I have left the blog for so long, I had not been looking at the statistics, so just a very quick note to welcome the reader(s?) from France. Je suis flatte que vous voulez lire. Je espere que vous apprecierez. My French is very poor, but I hope that is understandable!
Back to the NHS...........a new hospital to play with
It has been a while! I hope that you have all (?) found alternative sources of entertainment whilst the blog has been in hibernation and have not been too distraught without your favourite read...............
After what seemed an almost interminable wait, I finally made the first stumbling foray into a major London teaching hospital this morning. It might be a top class hospital in England, but please bear in mind that this is the NHS, so as you might guess, already things are not moving too smoothly. Before I describe today's events, a brief description of the correspendence so far.
Referral was made by Medway Hospital in October. Letter offering an appointment duly arrived within a week, quickly followed by another booking me in for an MRI scan on Saturday next. A few days later, the inevitable letter inviting me to contribute to a research study and a long questionnaire (this is a teaching hospital after all). Interesting study looking at what factors influence people's decision on the type of treatment they want. Excellent idea!
Long gap, then, out of the blue, another letter from UCLH.....
Another appointment?
A vital piece of information?
Another research study?
None of the above?
None of the above: it was an exact copy of the first letter (told you this was still the NHS!)
Back to today.........
As I was about to leave the house to catch a train to London, I noticed that there was a message on the answerphone. As I am notoriously bad at answering the telephone, this was nothing special, but I checked it anyway. Message from a very polite woman at UCLH saying that there was no need to attend the outpatient appointment as they could not make any decisions until after the MRI scan on Saturday. She left her name and a number so I called her back. She reiterated that I was welcome to go, but would probably be wasting my time by going to the appointment. I asked whether they had access to the MRI scan that I had been given at Medway Hospital? I had thought, naively as it turned out, that the NHS might be capable of sending such things electronically..............no chance. We have only spent umpteen squillion pounds on NHS information systems; this is clearly not enough! Upshot was that I decided to go anyway for three main reasons: a) I could test out the route, b)I would at least establish contact with the clinical team, and c) it would make me feel that something is happening. The latter was probably the most important consideration as it would help maintain my psychological wellbeing.
Off I toddled and ended up at an ultra modern, if not aesthetically pleasing, building off the Euston Road. The main reception area was quite a shock after Medway: clean, spacious, high backed comfy looking chairs, big reception desk, screens on the walls, and machines that invited you to scan your appointment letter to "sign in". Wow!
Sidled up to one of the machines, pressed its screen where invited, had the barcode on my letter scanned, machine emitted a very satisfying, and almost smug, bleep.......job done. Or was it? I expected a message with words to the effect of "thank you, please take a seat and watch a screen for your name to come up". What I got was "please go the reception desk". Went to the reception desk and spoke with the pleasant young man:
Me, handing over the letter: "your machine told me to come here"
Him, after checking his computer: "you need to go to reception downstairs"
Down the spiral staircase and into the netherworld of the UCLH Macmillan Cancer Treatment Centre...........have you guessed?
A queue of people in front of a reception desk personnned by two very stressed looking young men with piles of patient files behind them, and about 50 people sitting in chairs around the edges of the reception area. In a curious was, this was reassuring; it confirmed to me that I was still in the hands of the NHS. Got to the front of the queue and received an apology: their main outpatients booking system was down and they were having enter everything manually. Final confirmation that I was still in the NHS.
40 minutes after the due appointment time, a young man in an expensive, but crumpled and slightly ill fitting, suit (or it may have been "fashionable") called my name. He introduced himself as the Professor, made a further introduction to a young doctor from Italy who was to join us, led me to a room, invited me to take a seat, apologised that he had to attend to something else, and rushed off!
Had a great few minutes talking to the young Italian doctor; he was from Rome and had been allowed by his girlfriend to study in London for 12 months, but no longer than that.
The Prof returned, explained that he could not do much until after the MRI scan and leafed through the paperwork that he had on me from Medway. No pathology report, no copies of MRI, no copies of anything apart from the referral letter. Sent an email to his secretary asking her to pursue Medway, dictated a letter back to Medway and advised me that I should get copies of everything myself and carry them around in a folder................welcome to the 21st century!
Appointment booked to see him again on 7th January.
Hint: If you ever get tangled up with the NHS, get copies of everything (and I mean everything!) as you go along. You will need them if you want treatment.
Before I sign off until after the MRI scan on Saturday, an amusing juxtaposition. Whilst writing this, there was an item on Newsnight (for non UK readers, this is a formerly "heavyweight" TV news programme which is watched by about 6 of us in the country), discussing private contracts in the NHS. A wonderfully dinosaur-like representative of hospital consultants was trying to tell us NHS good, private bad. Given that about 90% of hospital consultants derive significant proportions of their income from private work, this seemed a little hypocritical. It also proved that she had never had to use the NHS herself!
Not sure why I thought of this song, but it has been rattling round my head for a few days so I thought I would share it with you:
https://www.youtube.com/watch?v=BF9TjbdJyUE
Back on Saturday..............
After what seemed an almost interminable wait, I finally made the first stumbling foray into a major London teaching hospital this morning. It might be a top class hospital in England, but please bear in mind that this is the NHS, so as you might guess, already things are not moving too smoothly. Before I describe today's events, a brief description of the correspendence so far.
Referral was made by Medway Hospital in October. Letter offering an appointment duly arrived within a week, quickly followed by another booking me in for an MRI scan on Saturday next. A few days later, the inevitable letter inviting me to contribute to a research study and a long questionnaire (this is a teaching hospital after all). Interesting study looking at what factors influence people's decision on the type of treatment they want. Excellent idea!
Long gap, then, out of the blue, another letter from UCLH.....
Another appointment?
A vital piece of information?
Another research study?
None of the above?
None of the above: it was an exact copy of the first letter (told you this was still the NHS!)
Back to today.........
As I was about to leave the house to catch a train to London, I noticed that there was a message on the answerphone. As I am notoriously bad at answering the telephone, this was nothing special, but I checked it anyway. Message from a very polite woman at UCLH saying that there was no need to attend the outpatient appointment as they could not make any decisions until after the MRI scan on Saturday. She left her name and a number so I called her back. She reiterated that I was welcome to go, but would probably be wasting my time by going to the appointment. I asked whether they had access to the MRI scan that I had been given at Medway Hospital? I had thought, naively as it turned out, that the NHS might be capable of sending such things electronically..............no chance. We have only spent umpteen squillion pounds on NHS information systems; this is clearly not enough! Upshot was that I decided to go anyway for three main reasons: a) I could test out the route, b)I would at least establish contact with the clinical team, and c) it would make me feel that something is happening. The latter was probably the most important consideration as it would help maintain my psychological wellbeing.
Off I toddled and ended up at an ultra modern, if not aesthetically pleasing, building off the Euston Road. The main reception area was quite a shock after Medway: clean, spacious, high backed comfy looking chairs, big reception desk, screens on the walls, and machines that invited you to scan your appointment letter to "sign in". Wow!
Sidled up to one of the machines, pressed its screen where invited, had the barcode on my letter scanned, machine emitted a very satisfying, and almost smug, bleep.......job done. Or was it? I expected a message with words to the effect of "thank you, please take a seat and watch a screen for your name to come up". What I got was "please go the reception desk". Went to the reception desk and spoke with the pleasant young man:
Me, handing over the letter: "your machine told me to come here"
Him, after checking his computer: "you need to go to reception downstairs"
Down the spiral staircase and into the netherworld of the UCLH Macmillan Cancer Treatment Centre...........have you guessed?
A queue of people in front of a reception desk personnned by two very stressed looking young men with piles of patient files behind them, and about 50 people sitting in chairs around the edges of the reception area. In a curious was, this was reassuring; it confirmed to me that I was still in the hands of the NHS. Got to the front of the queue and received an apology: their main outpatients booking system was down and they were having enter everything manually. Final confirmation that I was still in the NHS.
40 minutes after the due appointment time, a young man in an expensive, but crumpled and slightly ill fitting, suit (or it may have been "fashionable") called my name. He introduced himself as the Professor, made a further introduction to a young doctor from Italy who was to join us, led me to a room, invited me to take a seat, apologised that he had to attend to something else, and rushed off!
Had a great few minutes talking to the young Italian doctor; he was from Rome and had been allowed by his girlfriend to study in London for 12 months, but no longer than that.
The Prof returned, explained that he could not do much until after the MRI scan and leafed through the paperwork that he had on me from Medway. No pathology report, no copies of MRI, no copies of anything apart from the referral letter. Sent an email to his secretary asking her to pursue Medway, dictated a letter back to Medway and advised me that I should get copies of everything myself and carry them around in a folder................welcome to the 21st century!
Appointment booked to see him again on 7th January.
Hint: If you ever get tangled up with the NHS, get copies of everything (and I mean everything!) as you go along. You will need them if you want treatment.
Before I sign off until after the MRI scan on Saturday, an amusing juxtaposition. Whilst writing this, there was an item on Newsnight (for non UK readers, this is a formerly "heavyweight" TV news programme which is watched by about 6 of us in the country), discussing private contracts in the NHS. A wonderfully dinosaur-like representative of hospital consultants was trying to tell us NHS good, private bad. Given that about 90% of hospital consultants derive significant proportions of their income from private work, this seemed a little hypocritical. It also proved that she had never had to use the NHS herself!
Not sure why I thought of this song, but it has been rattling round my head for a few days so I thought I would share it with you:
https://www.youtube.com/watch?v=BF9TjbdJyUE
Back on Saturday..............
Friday 7 November 2014
NHS again
Back on the NHS theme again. I had not anticipated that I would have much, or anything, to say about it until I had met with the good folk at University College Hospital (UCH) on the 10th of December, but a couple of things happened today that I could not resist writing about.
After a lot about the failings of the local NHS, it is a real pleasure to be able to relate some good news about how it can work well. One relates to Medway Hospital, the other to the good sense and planning at UCH.
You may recall that the MRI scan I had to look at my prostate revealed another potential problem which led to an endosocopy the other week. The bits that were removed during this duly went off to the pathology department at Medway Hospital with the usual assurance that results would be available in "about 2 weeks".
Forgive me, but after waiting 4 weeks last time, I did not have a lot of faith in the 2 week estimate. But no, I got home yesterday to find a message from the surgeon asking me to call him back. Tried, he was busy "in theatre". Love that expression; conjures pictures of surgeons and amateur dramatics..............mind you, there are an awful lot of surgeons who enjoy a drama!
This afternoon, the 'phone rang (or, strictly speaking, warbled a bit) and there was the good professor on the other end. He had actually taken the time to telephone in order to tell me that the histology report revealed nothing sinister. You may recall that I quoted my experiences in the endoscopy suite as a study in excellence the other week; well, this phone call confirmed my view. Well done Medway Hospital, or at least, well done Professor Wegstapel.
The other good thing arrived in the post; it was an MRI appointment UCH which has been booked for the 13th of December (a saturday).
One of my criticisms of Medway hospital was that everything was done in series i.e. seen by someone, they refer you for an investigation, you go back to them, they refer you for something else etc etc etc. Weeks in between each stage. Nothing like that at UCH, they understand what will be needed and book you in advance. What would have stretched to 2, 3 or 4 weeks locally will happen in 3 days at one of the big London Hospitals!
A topical music clip for a change. For those of you who do not live in the UK, and for anyone who is not really into politics, this may be a bit obscure. Believe it or not, the man singing was actually a Minister in the British Government until 4 day ago..........
https://www.youtube.com/watch?v=DDd_deMoUpc
After a lot about the failings of the local NHS, it is a real pleasure to be able to relate some good news about how it can work well. One relates to Medway Hospital, the other to the good sense and planning at UCH.
You may recall that the MRI scan I had to look at my prostate revealed another potential problem which led to an endosocopy the other week. The bits that were removed during this duly went off to the pathology department at Medway Hospital with the usual assurance that results would be available in "about 2 weeks".
Forgive me, but after waiting 4 weeks last time, I did not have a lot of faith in the 2 week estimate. But no, I got home yesterday to find a message from the surgeon asking me to call him back. Tried, he was busy "in theatre". Love that expression; conjures pictures of surgeons and amateur dramatics..............mind you, there are an awful lot of surgeons who enjoy a drama!
This afternoon, the 'phone rang (or, strictly speaking, warbled a bit) and there was the good professor on the other end. He had actually taken the time to telephone in order to tell me that the histology report revealed nothing sinister. You may recall that I quoted my experiences in the endoscopy suite as a study in excellence the other week; well, this phone call confirmed my view. Well done Medway Hospital, or at least, well done Professor Wegstapel.
The other good thing arrived in the post; it was an MRI appointment UCH which has been booked for the 13th of December (a saturday).
One of my criticisms of Medway hospital was that everything was done in series i.e. seen by someone, they refer you for an investigation, you go back to them, they refer you for something else etc etc etc. Weeks in between each stage. Nothing like that at UCH, they understand what will be needed and book you in advance. What would have stretched to 2, 3 or 4 weeks locally will happen in 3 days at one of the big London Hospitals!
A topical music clip for a change. For those of you who do not live in the UK, and for anyone who is not really into politics, this may be a bit obscure. Believe it or not, the man singing was actually a Minister in the British Government until 4 day ago..........
https://www.youtube.com/watch?v=DDd_deMoUpc
Monday 3 November 2014
Newspapers can be useful......
In my house, newspapers have many uses which their electronic e-versions could never hope to match. Amongst other things, they are used to:
You may also recall an earlier blog post in which I speculated about whether there were people who might want to apply their skills and / or knowledge to help others who were encountering difficulties with public services. Within a day of that post, I met someone in need of just that kind of help.
Allow me to leave you in suspense for a few minutes longer and tell you a story. It is a story so breathtakingly daft that it defies belief, but I can assure you that it is true. I shall refer to the main character as S to preserve her anonymity for the time being.
S is a single mother of two, one child being of school age, the other still firmly in the pre-school stage. She is registered partially sighted and, as a consequence, cannot persuade the DVLA (for my non UK readers, this is the bunch of bureaucrats who give, or take away, driving licences. They are based in Walesland, a semi-autnomous principality somewhere in the West) to let her apply for a licence to drive a motor vehicle.
S used to have a job, to my mind and those of many others, a very important and skilled job, in which she has qualifications. She was part of a small and very select team of people who look after every whim of some very, very important guests. In short, she worked at the stable yard my horse lives in. Unfortunately, when she broke up with her husband, who used to drive her to and from work, she had to leave the job as there is no direct public transport from her younger son's childcare to the stables. She cycles, but it is an 11 mile trip with two HUGE hills inbetween; there is no way she could make it to work on time, or have the energy to work once she got there.
Being resourceful and determined that she should not languish on state benefits, S applied for something called the Access to Work Grant. This is a discretionary benefit to help people with disabilities get into, or back into, work. Great idea...............unfortunately not matched by reality.
Without boring you with the details, all that was needed was a taxi from the place she drops her younger child at 07:30 to work, which starts at 08:00, and the same in reverse at 16:30. The (un) civil servant she has been dealing with agreed that the AtoW Grant would be just the thing, but not from childcare to work. His genius solution was that she should walk 2 miles to the nearest station, catch a train to Swanley some 15 miles away, get off and wait, catch a train to Bearsted (15 miles back again) where he would provide the Grant for a taxi for the last 6 miles. This would get her to work at 10:00 -ish if she is lucky. Bonkers, or what?
I had a brainwave.
There is a by-election in Medway which is a little interesting. It is so contentious that the main political parties are falling over themselves to fill the place with their idea of the Great and Good (the author here dissociates himself from all political parties, all of whom are equally corrupt in his eyes) and to compete wildly with each other over who could be the most benevolent, hardest, nastiest or just plain maddest depending on what they are talking about at the time.
How would all these Islington (a nouveau riche part of London, the equivalent of a bat's cave for politicians) luvvies react if someone put a real person, who is a real victim of their system, right under their noses? How could this be achieved?
Answer: in by-elections, each party, with the possible exception of the Monster Raving Loony Party, has armies of people combing the local papers looking to see what the strange locals are on about. How about getting S's story into the local paper?
A quick check with S that she was ok with it (she was) and I dropped an email to the MM (remember them?) with a summary of S's story. No response.
Waited patiently (not my style)
A few days went by
Nothing
Sent another email regretting that they were not interested in the story
11 minutes went by
Bingo! Did I think that S would agree to be interviewed? Photographed? Too d**n right she would!
S and the MM now have each other's contact details. Let's hope that the power of the press can be harnessed, even in this small way, to do some good. I will keep you posted.
And now tonight's song. I heard this band on tv the other day and they blew me away. I hope that you enjoy them as much as I did
https://www.youtube.com/watch?v=1Lif-UZJjxA
- Provide a removable and disposable lining for the chicken coops
- Dry out wet wellies and shoes
- Light the fire in winter
- (this may strike some of you as a bit odd) Act as a conduit for the news and opinions of the day i.e. they are read.
You may also recall an earlier blog post in which I speculated about whether there were people who might want to apply their skills and / or knowledge to help others who were encountering difficulties with public services. Within a day of that post, I met someone in need of just that kind of help.
Allow me to leave you in suspense for a few minutes longer and tell you a story. It is a story so breathtakingly daft that it defies belief, but I can assure you that it is true. I shall refer to the main character as S to preserve her anonymity for the time being.
S is a single mother of two, one child being of school age, the other still firmly in the pre-school stage. She is registered partially sighted and, as a consequence, cannot persuade the DVLA (for my non UK readers, this is the bunch of bureaucrats who give, or take away, driving licences. They are based in Walesland, a semi-autnomous principality somewhere in the West) to let her apply for a licence to drive a motor vehicle.
S used to have a job, to my mind and those of many others, a very important and skilled job, in which she has qualifications. She was part of a small and very select team of people who look after every whim of some very, very important guests. In short, she worked at the stable yard my horse lives in. Unfortunately, when she broke up with her husband, who used to drive her to and from work, she had to leave the job as there is no direct public transport from her younger son's childcare to the stables. She cycles, but it is an 11 mile trip with two HUGE hills inbetween; there is no way she could make it to work on time, or have the energy to work once she got there.
Being resourceful and determined that she should not languish on state benefits, S applied for something called the Access to Work Grant. This is a discretionary benefit to help people with disabilities get into, or back into, work. Great idea...............unfortunately not matched by reality.
Without boring you with the details, all that was needed was a taxi from the place she drops her younger child at 07:30 to work, which starts at 08:00, and the same in reverse at 16:30. The (un) civil servant she has been dealing with agreed that the AtoW Grant would be just the thing, but not from childcare to work. His genius solution was that she should walk 2 miles to the nearest station, catch a train to Swanley some 15 miles away, get off and wait, catch a train to Bearsted (15 miles back again) where he would provide the Grant for a taxi for the last 6 miles. This would get her to work at 10:00 -ish if she is lucky. Bonkers, or what?
I had a brainwave.
There is a by-election in Medway which is a little interesting. It is so contentious that the main political parties are falling over themselves to fill the place with their idea of the Great and Good (the author here dissociates himself from all political parties, all of whom are equally corrupt in his eyes) and to compete wildly with each other over who could be the most benevolent, hardest, nastiest or just plain maddest depending on what they are talking about at the time.
How would all these Islington (a nouveau riche part of London, the equivalent of a bat's cave for politicians) luvvies react if someone put a real person, who is a real victim of their system, right under their noses? How could this be achieved?
Answer: in by-elections, each party, with the possible exception of the Monster Raving Loony Party, has armies of people combing the local papers looking to see what the strange locals are on about. How about getting S's story into the local paper?
A quick check with S that she was ok with it (she was) and I dropped an email to the MM (remember them?) with a summary of S's story. No response.
Waited patiently (not my style)
A few days went by
Nothing
Sent another email regretting that they were not interested in the story
11 minutes went by
Bingo! Did I think that S would agree to be interviewed? Photographed? Too d**n right she would!
S and the MM now have each other's contact details. Let's hope that the power of the press can be harnessed, even in this small way, to do some good. I will keep you posted.
And now tonight's song. I heard this band on tv the other day and they blew me away. I hope that you enjoy them as much as I did
https://www.youtube.com/watch?v=1Lif-UZJjxA
Wednesday 29 October 2014
Appointment date!
I was not really intending to write any more posts for a while, but I had a demand from my "public" to keep writing (thank you R!) and a few things have happened over the last couple of days.
The appointment letter from University College Hospital in London arrived. They got my surname wrong, I am plural, not singular.........in the spelling of my name at any rate, but sent it by first class post. First outpatients appointment on the 10th of December (for my reader from the USA, that's 12.10). Checked out the Professor who runs the team that I will be seeing on the internet: he is at the leading edge of treating prostate cancer, best team I could possibly see, in this country at least. Phew!
If anyone is interested in public service websites, I would recommend a look at www.uclh.nhs.uk It has to be the best I have seen so far. Let's hope that it is not a case of "all fur coat and no knickers".
Now I have certainty about how bad the cancer is and the way forward, I took the plunge and told my parents. This may seem a bit odd, but I had not told them, or my sister, what was going on. Very simple rationale: until I knew what the future holds (at least on the prostate front), no point in worrying them. This is probably a dilemma that a lot of people with a diagnosis of cancer face; there is no easy answer, it just has to be thought through.
Result? Long 'phone call, concern but not panic, and positive support. Means a lot to me.
Parents told my sister who called this afternoon. My father had told her about this blog and she read it all..............in one go!! Must admit that I asked her whether she had a life! Cool and supportive though; if you are reading this: thanks. Additional benefit: the page views for the blog were through the roof today.
Meanwhile, you may recall that I wrote about the idea of helping other people negotiate public services and that (did I tell you?) someone I happen to know was having a real problem with getting the system to work for her. Well, today we started on influencing things. It is an area I have no real expertise in, so our first strategem is to get the local newspaper engaged. The paper has been "following" me on Twitter and it is potentially a good story for them, so hopefully they will take it up. We shall see. Sam's dilemma may well become the focus of this blog for the next few weeks; for those of you who do not like the ritual humilation of politicians, it might not be to your taste.
A bit stuck for a song, but this one is pretty good:
https://www.youtube.com/watch?v=Mln0RciE2o0
Enough rambling for one night......
The appointment letter from University College Hospital in London arrived. They got my surname wrong, I am plural, not singular.........in the spelling of my name at any rate, but sent it by first class post. First outpatients appointment on the 10th of December (for my reader from the USA, that's 12.10). Checked out the Professor who runs the team that I will be seeing on the internet: he is at the leading edge of treating prostate cancer, best team I could possibly see, in this country at least. Phew!
If anyone is interested in public service websites, I would recommend a look at www.uclh.nhs.uk It has to be the best I have seen so far. Let's hope that it is not a case of "all fur coat and no knickers".
Now I have certainty about how bad the cancer is and the way forward, I took the plunge and told my parents. This may seem a bit odd, but I had not told them, or my sister, what was going on. Very simple rationale: until I knew what the future holds (at least on the prostate front), no point in worrying them. This is probably a dilemma that a lot of people with a diagnosis of cancer face; there is no easy answer, it just has to be thought through.
Result? Long 'phone call, concern but not panic, and positive support. Means a lot to me.
Parents told my sister who called this afternoon. My father had told her about this blog and she read it all..............in one go!! Must admit that I asked her whether she had a life! Cool and supportive though; if you are reading this: thanks. Additional benefit: the page views for the blog were through the roof today.
Meanwhile, you may recall that I wrote about the idea of helping other people negotiate public services and that (did I tell you?) someone I happen to know was having a real problem with getting the system to work for her. Well, today we started on influencing things. It is an area I have no real expertise in, so our first strategem is to get the local newspaper engaged. The paper has been "following" me on Twitter and it is potentially a good story for them, so hopefully they will take it up. We shall see. Sam's dilemma may well become the focus of this blog for the next few weeks; for those of you who do not like the ritual humilation of politicians, it might not be to your taste.
A bit stuck for a song, but this one is pretty good:
https://www.youtube.com/watch?v=Mln0RciE2o0
Enough rambling for one night......
Tuesday 28 October 2014
Inked!
Nothing relevant to healthcare this time.............
You may recall a post entitled "Just do it"? Well I did it, or rather a very pleasant young man called Jack did it for me.
45 minute drive to a town I used to know reasonably well in a previous part of my life. Parking was, as predicted, a nightmare and incredibly expensive once I had found a space which was no easy feat. It was always pretty affluent, but the recession seems to have passed this place by; I think that the term is "conspicuous consumption". If I was rich and could afford to have the principles, the sights I saw might make me think seriously about becoming a socialist!
Tucked away in a very old part of the town centre full of designer this, that and the other, was a tiny shopfront which housed the tattoo emporium. Entering was a bit like going into a reverse version of the Tardis: it was small on the outside, but tiny on the inside!
Waited for a real "hooray Henry" of about 18 to finish his enquiry and explained that I had an appointment with Jack. First thing he did was offer me a nut from a bag of them he was eating. Don't know about you, but I found it really quite reassuring about meeting someone who is about to puncture you with needles and the first thing they do is offer to share their lunch with you; must be a throwback to days long gone.
The downstairs room in the emporium was tiny, the staircase to the upstairs room was even smaller! You know when you see films about people squeezing through claustrophobic gaps in caves? You get the idea..............
Jack went to prepare the stencil based on my design and left me to listen to the really good mix of music playing whilst looking at his artwork framed on the walls of the room. His Japanese dragon (3 toes) and Koi were absolutely amazing.
Chat about why I was having the work done, life, the universe and everything, new kit taken from sterile bags and away we went......
You may have heard that having a tattoo hurts. I think that this must depend on your pain threshold and (I expect) where the tattoo is being applied. Either I have a high threshold or arms are not a sensitive area; it was not at all painful.
Two hours of diligent work on Jack's part and a few interruptions ensued. The interruptions were great fun, particularly when one of his clients / friends dropped in to give him a present from Seattle. This chap took at look at what Jack was doing on my arm and made approving noises. Jack then asked him how the work on his back was, so he showed us: a superb dragon covered most of it!
All in all, a really fun experience and a glimpse into another sub-culture with some really friendly people who were not at all phased by the old bloke coming in for his first ever tattoo. It was more like being welcomed into a new "family".
Job done, time to settle up. You may recall that I described the town this is happening in as being incredibly affluent, but did not tell you its name. There is a reason for that........a precaution just in case the tax man ever reads this.
Jack asked if I had been given a quote (I hadn't), then suggested a figure which he was clearly happy to negotiate about. Call me old fashioned, but if someone gives excellent service, devotes their skills to you for 2 hours and quotes a lower figure than you expected, I think that it would have been appallingly rude to negotiate. Bit of a catch: cash only! In one of the richest towns in the country, what a relief to find a business that deals in cash. However, I did not have enough on me and told him I would need to go to the bank machine. "I will trust you" was the instant response..................
If you live in the south of the country and intend to get a tattoo, you could not go anywhere better! If anyone wants the name of the business and its address, happy to give them if you drop me a note.
Was at a bit of a loss for an appropriate song, but the title of this one seems to fit and it is sung by one of the all time greats:
https://www.youtube.com/watch?v=2TG7AqzyQQU
You may recall a post entitled "Just do it"? Well I did it, or rather a very pleasant young man called Jack did it for me.
45 minute drive to a town I used to know reasonably well in a previous part of my life. Parking was, as predicted, a nightmare and incredibly expensive once I had found a space which was no easy feat. It was always pretty affluent, but the recession seems to have passed this place by; I think that the term is "conspicuous consumption". If I was rich and could afford to have the principles, the sights I saw might make me think seriously about becoming a socialist!
Tucked away in a very old part of the town centre full of designer this, that and the other, was a tiny shopfront which housed the tattoo emporium. Entering was a bit like going into a reverse version of the Tardis: it was small on the outside, but tiny on the inside!
Waited for a real "hooray Henry" of about 18 to finish his enquiry and explained that I had an appointment with Jack. First thing he did was offer me a nut from a bag of them he was eating. Don't know about you, but I found it really quite reassuring about meeting someone who is about to puncture you with needles and the first thing they do is offer to share their lunch with you; must be a throwback to days long gone.
The downstairs room in the emporium was tiny, the staircase to the upstairs room was even smaller! You know when you see films about people squeezing through claustrophobic gaps in caves? You get the idea..............
Jack went to prepare the stencil based on my design and left me to listen to the really good mix of music playing whilst looking at his artwork framed on the walls of the room. His Japanese dragon (3 toes) and Koi were absolutely amazing.
Chat about why I was having the work done, life, the universe and everything, new kit taken from sterile bags and away we went......
You may have heard that having a tattoo hurts. I think that this must depend on your pain threshold and (I expect) where the tattoo is being applied. Either I have a high threshold or arms are not a sensitive area; it was not at all painful.
Two hours of diligent work on Jack's part and a few interruptions ensued. The interruptions were great fun, particularly when one of his clients / friends dropped in to give him a present from Seattle. This chap took at look at what Jack was doing on my arm and made approving noises. Jack then asked him how the work on his back was, so he showed us: a superb dragon covered most of it!
All in all, a really fun experience and a glimpse into another sub-culture with some really friendly people who were not at all phased by the old bloke coming in for his first ever tattoo. It was more like being welcomed into a new "family".
Job done, time to settle up. You may recall that I described the town this is happening in as being incredibly affluent, but did not tell you its name. There is a reason for that........a precaution just in case the tax man ever reads this.
Jack asked if I had been given a quote (I hadn't), then suggested a figure which he was clearly happy to negotiate about. Call me old fashioned, but if someone gives excellent service, devotes their skills to you for 2 hours and quotes a lower figure than you expected, I think that it would have been appallingly rude to negotiate. Bit of a catch: cash only! In one of the richest towns in the country, what a relief to find a business that deals in cash. However, I did not have enough on me and told him I would need to go to the bank machine. "I will trust you" was the instant response..................
If you live in the south of the country and intend to get a tattoo, you could not go anywhere better! If anyone wants the name of the business and its address, happy to give them if you drop me a note.
Was at a bit of a loss for an appropriate song, but the title of this one seems to fit and it is sung by one of the all time greats:
https://www.youtube.com/watch?v=2TG7AqzyQQU
Friday 24 October 2014
Going quiet for a bit........
........and going for quite a bit I hope!
Not a lot likely to be happening on the prostate front for a while, so please bear with me if I do not post for a while; I don't want to lose you!!
Just a couple of things that have happened in the last day or so.
Posted the last entry yesterday and sent the collected observations to the hospital, CQC and CCG. That was a challenge in itself when it came to Medway Hospital!
Finding the correct email address for the Chief Executive was a real problem. Tried the obvious, bounced back. Tried the address given on the hospital website: automated reply from the new owner of that address which basically said "if you are after the chief executive, try this address". I think that the third attempt was successful, but who knows?
Sent a copy to the nice manager who has been following this blog (thank you). She was on leave according to her automatic email reply. Received an email from her at 21:30! It was very much appreciated, but if you are reading this, apologies if you think the next bit is patronising.......speaking as someone who worked in the public sector for over 20 years and got into the "work is life" culture, please look after yourself and those you love first. In the long run, no-one values long hours; it is what you achieve that marks you out. There is very rarely anything which cannot wait another day.
I have been referred by the Medway consultant to a London Hospital, but had also sent an email to my GP to see whether he could "short circuit" the system as a back up. The London hospital would be what is known as a "tertiary referral", so I knew really that he could not do it.
Here is a mark of excellence in General Practice: I had a 'phone call from one of the excellent admin staff to tell me that my GP regretted he could not make the referral. What she said next was the excellent bit: he had received a copy of the referral from Medway Hospital, she had taken it upon herself to call the consultant's secretary at the new hospital and check out how long it was likely to take before I am seen! Talk about above and beyond........... the answer was about 4 weeks. This practice is run by one of the private companies so hated by some politicians (don't they realise that all GPs are small businesses and not NHS employees?) and is superb. Malling Health are excellent.
I will probably be back on Monday evening after the much vaunted tattoo
Until then, not a song, but something appropriate:
https://www.youtube.com/watch?v=QY9oWfkKt6A
Not a lot likely to be happening on the prostate front for a while, so please bear with me if I do not post for a while; I don't want to lose you!!
Just a couple of things that have happened in the last day or so.
Posted the last entry yesterday and sent the collected observations to the hospital, CQC and CCG. That was a challenge in itself when it came to Medway Hospital!
Finding the correct email address for the Chief Executive was a real problem. Tried the obvious, bounced back. Tried the address given on the hospital website: automated reply from the new owner of that address which basically said "if you are after the chief executive, try this address". I think that the third attempt was successful, but who knows?
Sent a copy to the nice manager who has been following this blog (thank you). She was on leave according to her automatic email reply. Received an email from her at 21:30! It was very much appreciated, but if you are reading this, apologies if you think the next bit is patronising.......speaking as someone who worked in the public sector for over 20 years and got into the "work is life" culture, please look after yourself and those you love first. In the long run, no-one values long hours; it is what you achieve that marks you out. There is very rarely anything which cannot wait another day.
I have been referred by the Medway consultant to a London Hospital, but had also sent an email to my GP to see whether he could "short circuit" the system as a back up. The London hospital would be what is known as a "tertiary referral", so I knew really that he could not do it.
Here is a mark of excellence in General Practice: I had a 'phone call from one of the excellent admin staff to tell me that my GP regretted he could not make the referral. What she said next was the excellent bit: he had received a copy of the referral from Medway Hospital, she had taken it upon herself to call the consultant's secretary at the new hospital and check out how long it was likely to take before I am seen! Talk about above and beyond........... the answer was about 4 weeks. This practice is run by one of the private companies so hated by some politicians (don't they realise that all GPs are small businesses and not NHS employees?) and is superb. Malling Health are excellent.
I will probably be back on Monday evening after the much vaunted tattoo
Until then, not a song, but something appropriate:
https://www.youtube.com/watch?v=QY9oWfkKt6A
Thursday 23 October 2014
The collected observations
As promised, my collected observations are set out below and shared with you, as loyal readers, before I send them on to the Hospital, Care Quality Commission and Clinical Commissioning Group. I apologise for the formatting, but I wrote this out in Word and copied it here. Nothing amusing in this one, and no song, but you might find bits of it interesting.....
Observations arising from investigations
for prostate cancer at Medway Maritime Hospital 2014
1. Introduction
As context, I am a former NHS
manager with a background which does not include acute hospital provision. I
was well aware of the difficulties facing Medway Maritime Hospital when I was
referred and used my knowledge, together with that of friends, family and
colleagues to map out potential allies / points of influence should I need
them.
Set out below are a series of
observations based on a journey through Medway Maritime Hospital in September
and October 2014. They are culled from a daily “blog” that I posted online documenting
my experiences and sharing them with anyone who was interested. The existence
of the blog was shared with the Hospital, CCG, CQC and clinical staff.
During the course of the journey,
attitudes towards me changed markedly and I suspect that, by the end, the
treatment that I was afforded was very different from that offered to the
majority of people using the hospital’s services.
This document ends with a
description of the excellent service that I received at the very end of that
journey which should set the standards for all other parts of the hospital.
The general environment at Medway
Hospital is poor. Although the problems are probably mostly due to the failure
to secure funding for re-development, there are some basics which would not be
difficult to rectify:
2.1 Piped radio
At least one main outpatient waiting
area had continuous commercial music radio piped through its PA system. Given
that the vast majority of the people waiting were middle aged or older, the up
to date pop music did not create a relaxing atmosphere.
2.2 Signposting
Signposting throughout the
hospital was poor and the hospital maps on display were both too small for
people with a visual impairment and out of date.
The route-finding design within
buildings may be helpful to people who have visited frequently and only need
reminders, but are very confusing for anyone visiting the hospital for the
first time. Symbols and colours are used, but their application is poor.
2.3 Automatic doors
At least two sets of automatic
doors were not functioning. Unfortunately, these were at the entrance that
serves the Day Unit, rendering access to people with wheelchairs virtually
impossible without assistance.
2.4 General decor
In most clinical areas, the decor
was shabby giving the impression that people using the hospital were not
valued.
2.5 WCs
These were of variable standards
of cleanliness. One was an evident hazard to health, obviously not having been
inspected or cleaned for some time and with a broken pedal bin which left
people either to lift the lid by hand or dispose of used paper towels on the
floor.
3. Privacy and Dignity
3.1 Gowns
The hospital still uses open back
gowns in the areas that I experienced. It might do well to check the
dignityincare.org.uk website to see the work of Fatima Ba-Alawi, and the
NHSIQ.nhs.uk website.
3.2 Cublicles
Perhaps the most shocking sight I
saw was of someone on a trolley recovering from the effects of sedation in an
area which was clearly visible to me when I went to collect a preparation pack.
No effort was made by the staff to shield her and she was in my direct line of
sight as I left the unit. On asking at a later date I was told that this was
primarily a clinical area and that only “patients” are normally in it. I am
still at a loss to understand this attempt at justification.
3.3 Changing rooms
In one diagnostic area, I was
shown to a small, lockable, cubicle to change into a gown before returning to
the waiting area. This department was clearly aware of the potential problems
with hospital gowns and had a policy of asking people to don two: one facing forwards,
the other backwards.
To store my clothes, I was
provided with a second hand plastic bag marked “patients property”. It had
clearly been used many times previously. On the plus side, a lockable cabinet
was provided to store any valuable metal items I had with me.
3.4 Confidentiality
The clerking in process in every
area involved me confirming my name, date of birth and address. This was
invariably done in full hearing of a waiting room full of people.
4. Staff attitudes
Staff attitudes were variable,
with the most junior and most senior generally exhibiting a much better
attitude than others.
4.1 Introductions
At the start of my journey
through Medway Maritime Hospital, very few members of staff introduced
themselves either by name or profession without prompting. In one case, I had
to prompt a second time to elicit the fact that one of the people present was a
student.
By the end of my journey,
introductions were made universally and without prompting.
4.2 Person vs “patient”
There was a marked reluctance to
refer to me as a person, the preference being for the use of the impersonal
word patient. Despite asking that I be seen as a person, some staff insisted
that, whilst I was under their care, I was a patient. Given that empathy is at
the heart of most professional training, I found this disappointing.
A notable exception was a
healthcare assistant who told me that she was there because she liked people
and felt it important to relate to the person as much as the reason they were
there.
5. Protocols / administration
5.1 Delay
Following a biopsy, I was told
that I would be invited back for a consultation within 2 weeks to hear the
results and talk about what needed to happen next. In the event, it took 4
weeks and no satisfactory explanation was ever offered. My hope is that this
was an exception.
5.2 Series vs parallel
On receiving the results of a
biopsy, scan or other test, it should have been obvious to those reporting or
making clinical decisions what the next steps should be; I would have expected
to arrive at a consultation to find the next investigations already booked. As
it was, referrals were only made to CT, MRI etc. after the meeting with me.
Whilst on paper it may seem good
that decisions are not made in advance of seeing someone, it introduces further
delays. In cases where there is no practical choice about the next course of
action, it seems nonsensical to introduce administrative delays.
5.3 Appointment times
Outpatient appointments were
almost universally 30 minutes behind time with a range from 0 (Oncology) to 50
(Urology). I understand that it is impossible to predict accurately how a
clinic will progress due to emergencies etc., but it might be helpful if people
with booked appointments were sent a text message in advance warning them of
delay.
Much emphasis is placed on the
user of services letting the hospital know if they are unlikely to turn up, but
none on the hospital letting the service user know. If appointment times are
seen as a mutual responsibility with a commitment from both sides to tell each
other about delays, the DNA rate may fall dramatically.
5.4 Website
The Hospital website is extremely
poor. It contains very little useful information, is out of date, incomplete
and difficult to navigate Given that websites are often people’s first point of
call, a good website is vital. Medway Maritime’s website is probably the worst
hospital website that I have ever seen. For an example of excellence, I would
commend Darenth Valley Hospital’s excellent site.
5.5 Appointment notification
Medway Maritime’s practice of a
personal telephone call advising of an appointment is excellent.
The appointment letters may be a
problem for some as the clinic codes can reveal diagnoses. I my case, I was
invited to a clinic with the code MDT, to hear the results of a biopsy. This
code told me that I had been diagnosed with cancer. For me, this was not a
problem, but others may find it distressing.
6. Expertise & knowledge
6.1 Cannulae etc
The insertion of a cannula
without leaving residual bruising is a difficult challenge for even the best
trained staff. It was a member of staff at Medway Hospital who showed that it
is possible, even with a relatively large cannula, to insert it perfectly.
6.2 Side effects
For an MRI scan, I was told on
arrival in the scanner room that I would need to be injected with a muscle
relaxant in order to ensure that clear images were obtained. I asked about
potential side effects and was told that the drug had none.
Having driven home directly after
the scan, I checked the manufacturer’s data sheet and discovered that a common
side effect was dizziness or disorientation and that driving should be avoided.
This was a potentially lethal lack of knowledge on the part of staff
administering intravenous medication.
6.3 Doctors
Three of the consultants that I
met appeared to be of outstanding quality, willing to treat me as an equal
partner in decision making and having an excellent knowledge base.
One consultant is mentioned in “National
Targets” below
One consultant exhibited the most
appallingly arrogant and poor bedside manner, and was evidently lacking in
either skill or care in the use of a biopsy needle.
The one SpR that I met should go
far and I wish him all the best with his career.
6.4 National targets
On receiving a verbal
confirmation of a diagnosis of cancer, I mentioned the national cancer
treatment targets with particular reference to the 62 day target from referral
to commencement of treatment. Neither the locum consultant nor the specialist
nurse present was aware of this; the nurse told me that she believed me, but
would have to look it up.
This lack of basic knowledge was
more than made up for by the attention and help of another specialist nurse
later in my journey.
6.5 Sedation
Prior to undergoing a
colonoscopy, I queried the use of sedation. It was explained to me that a
fairly major mix of drugs was used and that I would not be able to drive, make
decisions etc. for 24 hours after the procedure. It was only on vigorous
challenge that I was offered Entonox as an alternative. Apparently the use of
entonox is an innovation in Medway Hospital.
By only offering debilitating sedation,
people have to stay in the department for some time post procedure. If entonox
is offered as an alternative, the recovery time is measured in minutes rather
than hours and there is reduced need for some people to arrange for care on
their return home.
7. Endoscopy Suite experience
Having made clear my preference
regarding sedation in advance, and, I suspect, the staff having been warned
about me by the manager who took an interest in the blog, the preparation,
procedure and discharge from the endoscopy suite were a study in excellence.
I knew in advance that the Colorectal
consultant was coming in especially to carry out the procedure, so had no
doubts about his abilities, either clinical or interpersonal and was fully
confident in both. The nursing staff were an unknown.
Ø
My partner and I were greeted very cordially by
a nurse who introduced herself without prompting and showed us to a consulting
room. Following a brief discussion about when she should return to collect me,
my partner left.
Ø
Clerked in efficiently, BP etc. checked, introduced
to the nurses who would be accompanying me into the procedure room, and led to
a private cubicle to change.
Ø
Informed when the consultant arrived.
Ø
In the procedure room, made comfortable, entonox
provided for use on demand and pillows placed to allow me a clear view of the
screen.
Ø
Running commentary from the consultant which was
both interesting and informative. He was joined by a colleague, who was also
introduced to me, who provided advice when required.
Ø
Returned to cubicle and informed that my partner
had arrived. Consultant arrived and gave me a summary of how he thought things
had gone, along with his recommendation for surveillance; shook my hand before
leaving.
Ø
Changed, clerked out and left. Elapsed time 1.5
hours of which 55 minutes was direct clinical intervention.
Ø
In the meantime, my partner had been informed
about progress and how long she might have to wait.
Ø
I was listened to, treated with dignity and
respect and stayed in the unit for the minimum time necessary. I would like to
think that this is standard treatment for all.
8. Conclusion
I was not the average “patient”
using the services of Medway Hospital and managed to negotiate a reasonably
timely path through its services by virtue of knowledge, influence and refusing
to accept the unacceptable. It was not an easy journey even for me as an
informed, assertive and persistent customer, negotiating systems that appeared
disconnected and uninterested. I have no doubt that the managers and some of
the clinical staff are glad that I have been referred on.
I have no complaint about how I
was treated or the generally high clinical standards that I experienced, but I
would like to feel that this feedback is taken seriously by the Board and used
as part of its drive to improve services for all.
Phil Woods 23.10.14.
Wednesday 22 October 2014
An amazing experience!
After a 2 day build up, I can truthfully say that today's visit to Medway Hospital was an amazing experience. Over the last 2+ months a lot of my experiences have been amazing, but "not in a good way, if you see what I mean" to quote a character from W1A.
Today was amazing in several good ways!
If you have been following this blog, you might have picked up that I am probably not the most compliant "patient" from the hospital's point of view and have not been slow in telling both you, and anyone else who cares to listen, what I think. Some has been good-ish, some not too good, and some downright appalling. Clearly, some one, or two, or three at the hospital has been listening...........
If the service I received today is repeated for everyone else using the same facility, perhaps Medway Maritime Hospital has a chance. There remains in the back of my mind though the cynical thought that I have been treated rather better than anyone else for a number of reasons, most of which you will probably have deduced from earlier posts.
If the manager who contacted me is reading this, the answer to "(is) there is anything I can do?" is an emphatic YES. Please reassure me that all people going through the endoscopy suite get treated just as well.
Arrival
I will not bore everyone with the details, but I was greeted properly, each new player introduced themselves properly, I was given proper choices and information, my privacy and dignity were respected............I could go on. The introduction to the unit was exactly what every person who uses the NHS has a right to expect.
On to the trolley
Private space to get changed into the obligatory hospital gown. Provided with a plastic bucket to put my clothes in which was a smaller version of the one my horse has in his stable for water (that did bring a smile). Put bucket on tray at bottom of trolley so it went everywhere with me; good idea!
The main event
Two nurses introduced themselves and wheeled me in. Greeted by the surgeon very cordially (I got on very well with him when we met the other week) . Provided with Entonox and away we went........
I will not give any gory details..........the squeamish amongst you are safe!
Surgeon was using a screen to see what he was doing, so I asked one of the nurses for an extra pillow to prop my head up and watched the show, with a great running commentary from the surgeon. I hope that you never need to have an endoscopy, but if you do it is really quite mind blowing to see yourself from the inside and the patterns of the capillaries are just fantastic; a truly psychedelic experience!
(The Entonox was not really necessary, but I took a few blasts just for the hell of getting mildly stoned courtesy of the NHS!).
Job done. Back to a cubicle, offered tea and toast (refused politely), got dressed. I was just about to leave the cubicle when the surgeon appeared, had a quick chat, shook my hand and took his leave.
Met partner in reception (she reported having been greeted very warmly on arrival), went home. In at 13:30, out by 15:00!
I am at a bit of a loss to understand why their standard sedation method leaves people unable to function for 24 hours and unable to leave the department for hours when they have light, user controlled, sedation available. I have a theory, but perhaps that is for the "collected thoughts" post which is yet to come.
The cynical thoughts I wrote about earlier? I have a feeling that several things might have happened behind the scenes, amongst which are:
University College Hospital, London, next stop on the treatment front when the appointment comes through. We shall see whether they provide a contrast...............
Meanwhile, tattoo next Monday. Really quite excited about that.
Now the songs. Bit of a problem today as I had thought that I might be a bit "out of it" while the action was taking place and picked songs appropriate to that. Never mind, they are fun listening, so I offer them anyway, along with one that seemed appropriate-ish to today as it turned out.
Today was amazing in several good ways!
If you have been following this blog, you might have picked up that I am probably not the most compliant "patient" from the hospital's point of view and have not been slow in telling both you, and anyone else who cares to listen, what I think. Some has been good-ish, some not too good, and some downright appalling. Clearly, some one, or two, or three at the hospital has been listening...........
If the service I received today is repeated for everyone else using the same facility, perhaps Medway Maritime Hospital has a chance. There remains in the back of my mind though the cynical thought that I have been treated rather better than anyone else for a number of reasons, most of which you will probably have deduced from earlier posts.
If the manager who contacted me is reading this, the answer to "(is) there is anything I can do?" is an emphatic YES. Please reassure me that all people going through the endoscopy suite get treated just as well.
Arrival
I will not bore everyone with the details, but I was greeted properly, each new player introduced themselves properly, I was given proper choices and information, my privacy and dignity were respected............I could go on. The introduction to the unit was exactly what every person who uses the NHS has a right to expect.
On to the trolley
Private space to get changed into the obligatory hospital gown. Provided with a plastic bucket to put my clothes in which was a smaller version of the one my horse has in his stable for water (that did bring a smile). Put bucket on tray at bottom of trolley so it went everywhere with me; good idea!
The main event
Two nurses introduced themselves and wheeled me in. Greeted by the surgeon very cordially (I got on very well with him when we met the other week) . Provided with Entonox and away we went........
I will not give any gory details..........the squeamish amongst you are safe!
Surgeon was using a screen to see what he was doing, so I asked one of the nurses for an extra pillow to prop my head up and watched the show, with a great running commentary from the surgeon. I hope that you never need to have an endoscopy, but if you do it is really quite mind blowing to see yourself from the inside and the patterns of the capillaries are just fantastic; a truly psychedelic experience!
(The Entonox was not really necessary, but I took a few blasts just for the hell of getting mildly stoned courtesy of the NHS!).
Job done. Back to a cubicle, offered tea and toast (refused politely), got dressed. I was just about to leave the cubicle when the surgeon appeared, had a quick chat, shook my hand and took his leave.
Met partner in reception (she reported having been greeted very warmly on arrival), went home. In at 13:30, out by 15:00!
I am at a bit of a loss to understand why their standard sedation method leaves people unable to function for 24 hours and unable to leave the department for hours when they have light, user controlled, sedation available. I have a theory, but perhaps that is for the "collected thoughts" post which is yet to come.
The cynical thoughts I wrote about earlier? I have a feeling that several things might have happened behind the scenes, amongst which are:
- The "Chaps" (Consultants) had been talking to each other and decided that they would take no chances with this one; he is potential trouble, seems well connected and knows what he is talking about.
- The manager who contacted me gave some instructions to the unit staff to be on their very best behaviour
University College Hospital, London, next stop on the treatment front when the appointment comes through. We shall see whether they provide a contrast...............
Meanwhile, tattoo next Monday. Really quite excited about that.
Now the songs. Bit of a problem today as I had thought that I might be a bit "out of it" while the action was taking place and picked songs appropriate to that. Never mind, they are fun listening, so I offer them anyway, along with one that seemed appropriate-ish to today as it turned out.
Tuesday 21 October 2014
Not a lot happening, and a lot happening........
No real update on the story today, but blog writing is becoming a bit addictive.........hopefully safer than cigarettes!
Two letters arrived from the hospital, both copies: one from the Professor to the consultant at UCH in London referring me as requested (he got it slightly wrong, but nothing I cannot rectify when I meet with the chap); the other a letter to my GP from the Gut man telling him that he would be taking a closer look.................
Neat way of leading back to endoscopy preparation. Only clear fluid from lunch today (8 and a bit hours ago as I write) until I get home tomorrow afternoon. Fortunately, "clear fluid" may have its compensations as both beer and whisky are clear and I could find nothing in the leaflet that might lead me to believe that alcohol is proscribed.
All I shall add is that not eating for 24 hours+ is going to be hard, and that the Industrial Drain Cleaner tastes pretty bad. I will leave the rest for you to block out of your imagination.
Finding a suitable song that I knew was not easy; I think that this one partly works, but may not appeal to many...........
https://www.youtube.com/watch?v=CGqwy_DQnS4
If that was a bit too much for you, here's a more whimsical song from the Velvets:
https://www.youtube.com/watch?v=H5je_eK0V1w
Two letters arrived from the hospital, both copies: one from the Professor to the consultant at UCH in London referring me as requested (he got it slightly wrong, but nothing I cannot rectify when I meet with the chap); the other a letter to my GP from the Gut man telling him that he would be taking a closer look.................
Neat way of leading back to endoscopy preparation. Only clear fluid from lunch today (8 and a bit hours ago as I write) until I get home tomorrow afternoon. Fortunately, "clear fluid" may have its compensations as both beer and whisky are clear and I could find nothing in the leaflet that might lead me to believe that alcohol is proscribed.
All I shall add is that not eating for 24 hours+ is going to be hard, and that the Industrial Drain Cleaner tastes pretty bad. I will leave the rest for you to block out of your imagination.
Finding a suitable song that I knew was not easy; I think that this one partly works, but may not appeal to many...........
https://www.youtube.com/watch?v=CGqwy_DQnS4
If that was a bit too much for you, here's a more whimsical song from the Velvets:
https://www.youtube.com/watch?v=H5je_eK0V1w
Monday 20 October 2014
The Oncologist
Hotfoot from a Board meeting at a prestigious (so I am told) National Newspaper, I trekked on down to Medway Hospital for a meeting with the Oncologist..................
Lest you get carried away thinking that you are reading the ravings of a left wing journalist, I should explain that the Board meeting was that of a small but perfectly formed Community Interest Company. It meets at the offices of the newspaper through the kind assistance of the newspapers Social Affairs Editor who is a valued adviser to the Board.
The story so far had probably not filled you with confidence about the services offered by Medway Hospital. Before you read further, let me reassure you that should you ever be unlucky enough to need the services of an oncologist, I very much doubt that they come better than this chap. Safe to read on now.............
A personal email from a hospital consultant offering to see you on the next working day is an occurrence so rare it rivals successfully striking a match on an unset jelly for improbablity. Having received such an offer, how could I not meet the person behind the invitation? It would have been impolite in the extreme which might be a good enough reason, but my curiosity was the main motivation for accepting the invitation.
He had even told me where the "Galton Day Unit" could be found: on the right of the main Hospital entrance. Should have been easy. I walked from the other side of the hospital and stopped at one of their tiny hospital maps which has every department listed in alphabetical order:
Endoscopy Green 1 (I shall bear that in mind for Wednesday!)
Eye Unit Blue 2
General Office Blue 2
Hang on a minute...............no Galton Day Unit!!!!
So I looked to see which building was to the right of the main entrance: The Macmillan Cancer Care . Centre. Aha, that must be it.
Walked around the corner, notcice directing me to "Elderly and Mental Health" left over from the 1920s..............walked a bit further.............entrance to what I think was a mental health unit..............walked a bit further, a doorway over which there was a sign announcing proudly that this was the Macmillan Cancer Care Centre which includes the Galton Day Unit.......phew!
Best decor I have seen so far in the most modern building I have yet seen on the site, even if the entrance is tucked away near the works department. Something tells me that the "we try to keep cancer quiet so as not to scare people" mentality is alive and well in Medway.
On the dot of 5, a smiling young man came into the waiting room and called my name. Being well trained, I got off the chair and followed him. This was the oncologist! He smiled, he greeted me cordially, he listened, he explained things as if he were talking to an equal, in short he was everything you could hope for in a consultant. I won't bore you with details, but we had a "groovy" time talking about scans (I finally got to see the MRI scan of the relevant bits; will definitely apply for a copy of that under Access to health Records!), the state of my prostate, the state of the health service, my views on what treatment I should have etc.
I could not resist trying to find out what had provoked such a sudden offer, and may have dropped the odd hint about understanding that I might somehow be not the most popular client they had seen for a while and that people might have been talking to each other. His charming evasions, laugh and close inspection of the floor every time anything like that came up said it all, although of course he denied anything of the sort.
Such a pity that the hospital does not offer the treatment that I want; I would have had no trouble trusting a department run by this chap.
With luck, that is the end of the cancer journey at Medway Hospital; off to London for the next bit. A whole new set of people to get to know............and blog about I expect.
Just have the endoscopy to get out of the way and I should be back to the 21st century!
Meanwhile, a footnote: the manager from Medway Hospital emailed me again this morning. Apart from getting my name wrong, she "appreciate(s) and respect(s) my decision not to discuss my treatment". To be fair, she did go on to offer her assistance if I wanted it. Full marks to her for trying, she is the only representative of the hospital who has made any effort to respond to a blog which must be pretty painful to read for managers of a hospital in special measures.
My only plea for assistance if you are reading this brave manager is please take the things I have pointed out seriously and do something about them: tell the Director of Nursing, the Medical Director, the acting Chief Exec about the blog, ask them to read it. This is not a work of fiction, it was all real and has even been sanitised in some parts so as not to scare readers too much. I got through it by fighting, being bloody minded and knowing which buttons to press; the vast majority of your customers are not equipped to do what I have done. Over to you.............
And now today's song.............
https://www.youtube.com/watch?v=0UCDmsWcNfE
Lest you get carried away thinking that you are reading the ravings of a left wing journalist, I should explain that the Board meeting was that of a small but perfectly formed Community Interest Company. It meets at the offices of the newspaper through the kind assistance of the newspapers Social Affairs Editor who is a valued adviser to the Board.
The story so far had probably not filled you with confidence about the services offered by Medway Hospital. Before you read further, let me reassure you that should you ever be unlucky enough to need the services of an oncologist, I very much doubt that they come better than this chap. Safe to read on now.............
A personal email from a hospital consultant offering to see you on the next working day is an occurrence so rare it rivals successfully striking a match on an unset jelly for improbablity. Having received such an offer, how could I not meet the person behind the invitation? It would have been impolite in the extreme which might be a good enough reason, but my curiosity was the main motivation for accepting the invitation.
He had even told me where the "Galton Day Unit" could be found: on the right of the main Hospital entrance. Should have been easy. I walked from the other side of the hospital and stopped at one of their tiny hospital maps which has every department listed in alphabetical order:
Endoscopy Green 1 (I shall bear that in mind for Wednesday!)
Eye Unit Blue 2
General Office Blue 2
Hang on a minute...............no Galton Day Unit!!!!
So I looked to see which building was to the right of the main entrance: The Macmillan Cancer Care . Centre. Aha, that must be it.
Walked around the corner, notcice directing me to "Elderly and Mental Health" left over from the 1920s..............walked a bit further.............entrance to what I think was a mental health unit..............walked a bit further, a doorway over which there was a sign announcing proudly that this was the Macmillan Cancer Care Centre which includes the Galton Day Unit.......phew!
Best decor I have seen so far in the most modern building I have yet seen on the site, even if the entrance is tucked away near the works department. Something tells me that the "we try to keep cancer quiet so as not to scare people" mentality is alive and well in Medway.
On the dot of 5, a smiling young man came into the waiting room and called my name. Being well trained, I got off the chair and followed him. This was the oncologist! He smiled, he greeted me cordially, he listened, he explained things as if he were talking to an equal, in short he was everything you could hope for in a consultant. I won't bore you with details, but we had a "groovy" time talking about scans (I finally got to see the MRI scan of the relevant bits; will definitely apply for a copy of that under Access to health Records!), the state of my prostate, the state of the health service, my views on what treatment I should have etc.
I could not resist trying to find out what had provoked such a sudden offer, and may have dropped the odd hint about understanding that I might somehow be not the most popular client they had seen for a while and that people might have been talking to each other. His charming evasions, laugh and close inspection of the floor every time anything like that came up said it all, although of course he denied anything of the sort.
Such a pity that the hospital does not offer the treatment that I want; I would have had no trouble trusting a department run by this chap.
With luck, that is the end of the cancer journey at Medway Hospital; off to London for the next bit. A whole new set of people to get to know............and blog about I expect.
Just have the endoscopy to get out of the way and I should be back to the 21st century!
Meanwhile, a footnote: the manager from Medway Hospital emailed me again this morning. Apart from getting my name wrong, she "appreciate(s) and respect(s) my decision not to discuss my treatment". To be fair, she did go on to offer her assistance if I wanted it. Full marks to her for trying, she is the only representative of the hospital who has made any effort to respond to a blog which must be pretty painful to read for managers of a hospital in special measures.
My only plea for assistance if you are reading this brave manager is please take the things I have pointed out seriously and do something about them: tell the Director of Nursing, the Medical Director, the acting Chief Exec about the blog, ask them to read it. This is not a work of fiction, it was all real and has even been sanitised in some parts so as not to scare readers too much. I got through it by fighting, being bloody minded and knowing which buttons to press; the vast majority of your customers are not equipped to do what I have done. Over to you.............
And now today's song.............
https://www.youtube.com/watch?v=0UCDmsWcNfE
Sunday 19 October 2014
Had to share this.............
No plans to post an entry today, but this is worth sharing.
I love playing with language and (this is a bit sad) enjoy the pedantry of correcting bad grammar, pronunciation etc. So opening the "preparation pack" and reading some of its contents was a joy. There were three pieces of paper generated by the hospital that were of particular entertainment value:
A "pre-procedure questionnaire" which asked some wonderful questions, such as "do we have your details correct?" The details on this sheet consisted of my name (they got that wrong!) and hospital number. They had left things like address and NHS number blank. Given that both are on the hospital record system, this seemed a little slipshod. Other questions included: "Do you have a Hospital Acquired Infection?" I was tempted to answer that I do not, but may have by the time they have finished with me on Wednesday.............
The second was a leaflet which gave instructions for the industrial drain cleaner contained in the pack (you get the idea). Curiously, the section on eating, drinking and taking the drain cleaner did not match the leaflet that the manufacturers included with their product. Who should I believe? I opted for safety and will obey the drug company's leaflet.
The same hospital leaflet told me that, whilst the procedure was being carried out, a nurse would be with me to "provide reassurance"! After my encounter on Friday, I think that I will give that one a miss.
The third document was priceless. This was the appointment letter which told me that "The Trust aims to treat all patient's within........" A pedant's dream and the dream of all pedants. I love the Kent apostrophe: if in doubt, stick one in!
It's (see, an apostrophe!) the main body of the letter that really did it though:
"On the day of your procedure you may drink WATER only until two hours before your appointment time"
Bearing in mind that I am not supposed to eat anything for 24 hours beforehand, I initially took this as an invitation to indulge in a slap up meal anytime after 11:30. I already had the vision of a rare steak washed down with some Berry Brothers' claret as being the ideal way of taking my mind off what was to come. Then, despite reading what they wrote, I realised what they meant...............
The last paragraph was just plain weird. It warned that if you have sedation you should not drive home. Fair enough if you go with the heavy end of the sedation spectrum and do not know about Entonox. This was followed by a curious exhortation: "If you live alone (no comma) please ensure someone is with you overnight". Presumably people who live alone are expected to drag someone in off the street for the night? Possible perhaps, but would they want to be "with you"? The mind boggles!
Lastly, one of my pet hates about hospitals. I doubt that Medway is any different from the rest, but their letters and staff have the nasty habit of referring to people as "patients". I keep trying to tell them that this word should not be used to refer to me as a noun and that the adjective is entirely inappropriate when talking about me. I think they have understood the second part...............
With very little in the way of sarcasm, today's song:
https://www.youtube.com/watch?v=8h-oGEr-d7g
I love playing with language and (this is a bit sad) enjoy the pedantry of correcting bad grammar, pronunciation etc. So opening the "preparation pack" and reading some of its contents was a joy. There were three pieces of paper generated by the hospital that were of particular entertainment value:
A "pre-procedure questionnaire" which asked some wonderful questions, such as "do we have your details correct?" The details on this sheet consisted of my name (they got that wrong!) and hospital number. They had left things like address and NHS number blank. Given that both are on the hospital record system, this seemed a little slipshod. Other questions included: "Do you have a Hospital Acquired Infection?" I was tempted to answer that I do not, but may have by the time they have finished with me on Wednesday.............
The second was a leaflet which gave instructions for the industrial drain cleaner contained in the pack (you get the idea). Curiously, the section on eating, drinking and taking the drain cleaner did not match the leaflet that the manufacturers included with their product. Who should I believe? I opted for safety and will obey the drug company's leaflet.
The same hospital leaflet told me that, whilst the procedure was being carried out, a nurse would be with me to "provide reassurance"! After my encounter on Friday, I think that I will give that one a miss.
The third document was priceless. This was the appointment letter which told me that "The Trust aims to treat all patient's within........" A pedant's dream and the dream of all pedants. I love the Kent apostrophe: if in doubt, stick one in!
It's (see, an apostrophe!) the main body of the letter that really did it though:
"On the day of your procedure you may drink WATER only until two hours before your appointment time"
Bearing in mind that I am not supposed to eat anything for 24 hours beforehand, I initially took this as an invitation to indulge in a slap up meal anytime after 11:30. I already had the vision of a rare steak washed down with some Berry Brothers' claret as being the ideal way of taking my mind off what was to come. Then, despite reading what they wrote, I realised what they meant...............
The last paragraph was just plain weird. It warned that if you have sedation you should not drive home. Fair enough if you go with the heavy end of the sedation spectrum and do not know about Entonox. This was followed by a curious exhortation: "If you live alone (no comma) please ensure someone is with you overnight". Presumably people who live alone are expected to drag someone in off the street for the night? Possible perhaps, but would they want to be "with you"? The mind boggles!
Lastly, one of my pet hates about hospitals. I doubt that Medway is any different from the rest, but their letters and staff have the nasty habit of referring to people as "patients". I keep trying to tell them that this word should not be used to refer to me as a noun and that the adjective is entirely inappropriate when talking about me. I think they have understood the second part...............
With very little in the way of sarcasm, today's song:
https://www.youtube.com/watch?v=8h-oGEr-d7g
Saturday 18 October 2014
Endoscopy preparation
It is ok, this is not a graphic description of the preparation.................just another experience of Medway Hospital staff and where the hospital is "at" in its thinking.
I have an endoscopy coming up on Wednesday. Perhaps not the best way of phrasing it, but I went to the Lord Freud school of English! (for those without ready access to UK news, worth looking up some of the press coverage over the last few days if you want to understand that one).
As usual, notice of the date was a rush. A telephone call from the waiting list co-ordinator on Friday to tell me that I had been booked in for Wednesday and needed to collect the "preparation pack". Not hard to guess what is in that one! I asked her to pop it in the post, but given that fitting me in was obviously a last minute decision (albeit by a clinician I like and trust), she told me that I had to go to the Hospital to collect it as I needed to have it 2 days before the procedure. the pack would be left at the endocopy suite for me to collect.
Duly trolled down to the hospital (15 mile round trip) and found the endoscopy suite. Pressed the bell whilst reading a notice which said "only press once, we may be busy with your relative". Waited......nothing. Looked through the glass in the door and saw someone making their lunch.
Pressed again...............waited.................nothing
Called home to get the number of the woman who had called me earlier. Was just taking it down when someone with the code went in. "Doorstepped" her.............
Past a couple of rooms to be confronted with a counter behind which sat 3 people in green overalls. Was challenged as to what I was doing there and responded that I was there to pick up a pack for my endoscopy. One of them searched the pile: no pack with my name on it. Left her to sort that one out and made a general enquiry........
I had been told that I would have intra-venous sedation on the day and that I should not drive for 24 hours aferwards. I asked the people in green overalls what the real effects were and, off the record, how long before I would be able to drive? Two out of three looked at me as if I had just asked them to cut off one of their own limbs...............persisted..........still met with horror. One then "invited" me to talk to her in a meeting room.
This did not go well............
Sat me down and proceeded to give me a lecture about what patients should expect. She did not tell me her name and I only found out that she was a nurse when she reacted very badly to my insistence that I am a person not a "patient". She explained that to her we are all patients......it went a bit downhill for a bit!
I then challenged the bit about sedation again. This time, she came up with the "new" form of sedation that they had just introduced as an option: Entonox, better known as "gas and air". This has been a staple for midwives helping people through childbirth for more years than I can count and has been known about for 200 years, but it is new to Medway's endoscopy suite!! My flabber was well and truly ghasted!
It turns out that I can drive an hour after using Entonox, rather than 24 hours using their usual drug cocktail. Needless to say, I know which I will be choosing on Wednesday. Sorry folks, it means that you might have space for someone else on wednesday's list as I will not be hanging about recovering.
Pack found and went to navigate my way out. What I saw on the way out horrified me.
To leave the unit, I had to walk past a small room, the door of which was open leaving the contents in direct line of sight. Propped up on a trolley was a woman who was obviously recovering from sedation, still in her hospital gown.
Now call me old fashioned, but privacy and dignity were big even when I worked as a nursing auxiliary and I know the person who developed the South East Regional Privacy and Dignity Audit very well. To see someone left in full view of anyone passing in the 21st century was the worst bit of practice I have ever seen. If my friend from the CQC is reading this, I think that a rapid intervention is essential; this is practice from the dark ages.
If the manager from the hospital who contacted me is still reading the blog: I reckon you have about 5 days before all hell breaks loose from the outside world and I give fair warning that if it happens to me I will not rest until I have had a hand in shutting the place down. It was a disgrace.
The song:
https://www.youtube.com/watch?v=cGXU7268Z50
I have an endoscopy coming up on Wednesday. Perhaps not the best way of phrasing it, but I went to the Lord Freud school of English! (for those without ready access to UK news, worth looking up some of the press coverage over the last few days if you want to understand that one).
As usual, notice of the date was a rush. A telephone call from the waiting list co-ordinator on Friday to tell me that I had been booked in for Wednesday and needed to collect the "preparation pack". Not hard to guess what is in that one! I asked her to pop it in the post, but given that fitting me in was obviously a last minute decision (albeit by a clinician I like and trust), she told me that I had to go to the Hospital to collect it as I needed to have it 2 days before the procedure. the pack would be left at the endocopy suite for me to collect.
Duly trolled down to the hospital (15 mile round trip) and found the endoscopy suite. Pressed the bell whilst reading a notice which said "only press once, we may be busy with your relative". Waited......nothing. Looked through the glass in the door and saw someone making their lunch.
Pressed again...............waited.................nothing
Called home to get the number of the woman who had called me earlier. Was just taking it down when someone with the code went in. "Doorstepped" her.............
Past a couple of rooms to be confronted with a counter behind which sat 3 people in green overalls. Was challenged as to what I was doing there and responded that I was there to pick up a pack for my endoscopy. One of them searched the pile: no pack with my name on it. Left her to sort that one out and made a general enquiry........
I had been told that I would have intra-venous sedation on the day and that I should not drive for 24 hours aferwards. I asked the people in green overalls what the real effects were and, off the record, how long before I would be able to drive? Two out of three looked at me as if I had just asked them to cut off one of their own limbs...............persisted..........still met with horror. One then "invited" me to talk to her in a meeting room.
This did not go well............
Sat me down and proceeded to give me a lecture about what patients should expect. She did not tell me her name and I only found out that she was a nurse when she reacted very badly to my insistence that I am a person not a "patient". She explained that to her we are all patients......it went a bit downhill for a bit!
I then challenged the bit about sedation again. This time, she came up with the "new" form of sedation that they had just introduced as an option: Entonox, better known as "gas and air". This has been a staple for midwives helping people through childbirth for more years than I can count and has been known about for 200 years, but it is new to Medway's endoscopy suite!! My flabber was well and truly ghasted!
It turns out that I can drive an hour after using Entonox, rather than 24 hours using their usual drug cocktail. Needless to say, I know which I will be choosing on Wednesday. Sorry folks, it means that you might have space for someone else on wednesday's list as I will not be hanging about recovering.
Pack found and went to navigate my way out. What I saw on the way out horrified me.
To leave the unit, I had to walk past a small room, the door of which was open leaving the contents in direct line of sight. Propped up on a trolley was a woman who was obviously recovering from sedation, still in her hospital gown.
Now call me old fashioned, but privacy and dignity were big even when I worked as a nursing auxiliary and I know the person who developed the South East Regional Privacy and Dignity Audit very well. To see someone left in full view of anyone passing in the 21st century was the worst bit of practice I have ever seen. If my friend from the CQC is reading this, I think that a rapid intervention is essential; this is practice from the dark ages.
If the manager from the hospital who contacted me is still reading the blog: I reckon you have about 5 days before all hell breaks loose from the outside world and I give fair warning that if it happens to me I will not rest until I have had a hand in shutting the place down. It was a disgrace.
The song:
https://www.youtube.com/watch?v=cGXU7268Z50
A surprise and an idea
The surprise is not really exciting so I will start with the idea.......
Regular readers may recall that I wrote about whether I should go for the nuclear option under the title "Dilemma" the other day. An anonymous reader left a comment (my first!) advising me to go for it and observing that I was lucky to have a nuclear option, most people do not.
The comment set me thinking and has produced the germ of an idea. There will inevitably be a number of people who feel that they need to take a degree of control in similar situations, but do not have the knowledge, contacts or sheer bloody mindedness to do it. There must also be quite a few people like me about i.e with knowledge, access to contacts and bloody minded in the extreme (some politely refer to this as being an iconoclast!).
What would happen if there was a network of people like me who are prepared to help others take control, particularly over the delivery of public services which, theoretically, are there to serve us, not the other way around?
(By complete coincidence, I then bumped into someone I know who had exactly the kind of problem that I am talking about...........you may read more about her in later posts if she decides that she really wants to "go for it". )
Will people want to join a network like that?
I am meeting with some fellow iconoclasts on Monday; if we get time, I shall see what they think and let you know.
Now the surprise.......
This blog is linked to an email account which I rarely check. For reasons unknown, I took a look at it today and found a fascinating email from a middle manager at Medway Hospital. It was written on the 16th and invited me to "talk through my experiences and where you currently are in your pathway". Good to know that someone from the hospital has been reading the blog and had obviously taken it seriously enough to get in touch.
To regular readers, my response was predictable: thanks, but no thanks, although I will be happy to share a concise summary with the hospital's Board at the same time that I share it with you and send it to the delightful woman at the CQC.
As for where I am in my "pathway", I think that I have a pretty good idea about that one given that I have (mostly) had to determine progress through it by being precisely the kind of consumer of services that the NHS hates: one who has a good idea of how the system works and how to make it work for them.
I now have only two things left that will require visiting Medway Hospital: a meeting with the Oncologist tomorrow (I am curious about why he delayed the meeting and feel it would be impolite not to see him) and an endoscopy on wednesday. Even something as routine as an endoscopy has proved an interesting challenge at Medway. To save you from getting bored, I shall put that one up as a separate post; that way you can either choose to go for the "marathon" by reading both, or you can skip yet another tale of poor customer service............
Nearly forgot the song.....
Not sure whether I have posted this one before. Even if I have, it is worth listening to again.....and again......and again
https://www.youtube.com/watch?v=6FOUqQt3Kg0
Regular readers may recall that I wrote about whether I should go for the nuclear option under the title "Dilemma" the other day. An anonymous reader left a comment (my first!) advising me to go for it and observing that I was lucky to have a nuclear option, most people do not.
The comment set me thinking and has produced the germ of an idea. There will inevitably be a number of people who feel that they need to take a degree of control in similar situations, but do not have the knowledge, contacts or sheer bloody mindedness to do it. There must also be quite a few people like me about i.e with knowledge, access to contacts and bloody minded in the extreme (some politely refer to this as being an iconoclast!).
What would happen if there was a network of people like me who are prepared to help others take control, particularly over the delivery of public services which, theoretically, are there to serve us, not the other way around?
(By complete coincidence, I then bumped into someone I know who had exactly the kind of problem that I am talking about...........you may read more about her in later posts if she decides that she really wants to "go for it". )
Will people want to join a network like that?
I am meeting with some fellow iconoclasts on Monday; if we get time, I shall see what they think and let you know.
Now the surprise.......
This blog is linked to an email account which I rarely check. For reasons unknown, I took a look at it today and found a fascinating email from a middle manager at Medway Hospital. It was written on the 16th and invited me to "talk through my experiences and where you currently are in your pathway". Good to know that someone from the hospital has been reading the blog and had obviously taken it seriously enough to get in touch.
To regular readers, my response was predictable: thanks, but no thanks, although I will be happy to share a concise summary with the hospital's Board at the same time that I share it with you and send it to the delightful woman at the CQC.
As for where I am in my "pathway", I think that I have a pretty good idea about that one given that I have (mostly) had to determine progress through it by being precisely the kind of consumer of services that the NHS hates: one who has a good idea of how the system works and how to make it work for them.
I now have only two things left that will require visiting Medway Hospital: a meeting with the Oncologist tomorrow (I am curious about why he delayed the meeting and feel it would be impolite not to see him) and an endoscopy on wednesday. Even something as routine as an endoscopy has proved an interesting challenge at Medway. To save you from getting bored, I shall put that one up as a separate post; that way you can either choose to go for the "marathon" by reading both, or you can skip yet another tale of poor customer service............
Nearly forgot the song.....
Not sure whether I have posted this one before. Even if I have, it is worth listening to again.....and again......and again
https://www.youtube.com/watch?v=6FOUqQt3Kg0
Friday 17 October 2014
A real turn up!
If you read yesterday's post, you may remember that today was the day for the "nuclear" option. I had planned to go into action at 14:00 prompt, but first tried a few emails to see if I could provoke any action:
An email to the specialist nurse asking her to pursue the appointment with the Oncologist
An email to the Professor asking that he refer me direct to the Institute of Urology in London (they do the modern treatments)
An email to my GP enquiring as to whether he could make a referral to the IoU
A phone call to the Oncologist's secretary asking what had happened to my referral
Meanwhile, having heard nothing by 14:00, I established a new Twit identity to protect myself from retaliation and started to draft a blog entry detailing the issues so far. The plan was to "point" the local newspaper at it and to give the local politicians, CQC and CCG a chance to look if they wanted. The aim was to get the newspaper involved on the back of a very contentious by-election and drag the rest along to score points, defend, attack or whatever else they wanted to do. I was literally 10 minutes away from completing the blog post and hitting the "publish" button, when........
2 out of 4 yeilded results! Naturally, the Oncologist's secretary did not call back, and I did not expect the GP to respond, but the specialist nurse came back to tell me that the Oncologist did not want to do anything until the general surgeons had finished with me (?another month). More remarkable, the Professor's secretary sent me an email to say that he had faxed a referral to the IoU!!
The best kind of war: victory without a shot being fired..............
Now, at long last, my treatment will be in the hands of people who know what they are doing and have (I hope) an efficient system to support them.
And now a song about something just as improbable:
https://www.youtube.com/watch?v=_v2exWrsGOc
Late news: email from the Onclogist inviting me to meet him on Monday........after his normal clinic has finished! Not sure what provoked that, but something worked. No need really, but would be impolite to turn his offer down.
An email to the specialist nurse asking her to pursue the appointment with the Oncologist
An email to the Professor asking that he refer me direct to the Institute of Urology in London (they do the modern treatments)
An email to my GP enquiring as to whether he could make a referral to the IoU
A phone call to the Oncologist's secretary asking what had happened to my referral
Meanwhile, having heard nothing by 14:00, I established a new Twit identity to protect myself from retaliation and started to draft a blog entry detailing the issues so far. The plan was to "point" the local newspaper at it and to give the local politicians, CQC and CCG a chance to look if they wanted. The aim was to get the newspaper involved on the back of a very contentious by-election and drag the rest along to score points, defend, attack or whatever else they wanted to do. I was literally 10 minutes away from completing the blog post and hitting the "publish" button, when........
2 out of 4 yeilded results! Naturally, the Oncologist's secretary did not call back, and I did not expect the GP to respond, but the specialist nurse came back to tell me that the Oncologist did not want to do anything until the general surgeons had finished with me (?another month). More remarkable, the Professor's secretary sent me an email to say that he had faxed a referral to the IoU!!
The best kind of war: victory without a shot being fired..............
Now, at long last, my treatment will be in the hands of people who know what they are doing and have (I hope) an efficient system to support them.
And now a song about something just as improbable:
https://www.youtube.com/watch?v=_v2exWrsGOc
Late news: email from the Onclogist inviting me to meet him on Monday........after his normal clinic has finished! Not sure what provoked that, but something worked. No need really, but would be impolite to turn his offer down.
Thursday 16 October 2014
Dilemma
Day 83 what against the 62 day target and still not even a sniff of an appointment with the Oncologist. Time to make a decision...............
There are three options that I can see:
The NHS expects people to be acquiescent and have faith that it will act in their best interests. A fallacy which is peddled by NHS managers, clinicians and politicians alike. It is an organisation which is driven by the need to protect its own interests and those of a select few within it (mostly doctors); it has very little interest in people except unless it gets found out. If I was a "good little patient" and had allowed it to proceed at its own pace, I would probably still be waiting for a diagnosis, let alone anything else. But (done it again, now started a sentence with "but" twice in a lifetime!) I am not a patient "patient". I have pushed, threatened and generally made a nuisance of myself in an effort to get a moribund organisation to do what it is meant to. Then I tripped up.
My mistake was to trust a consultant when he told me that I would be seen by the next one in the long line within a fortnight. I sat back and waited...........and waited...........and waited.......Nothing!
I am not sure that I have the strength to keep fighting. The NHS has made it pretty clear that neither the organisation nor its clinicians give a damn about us population units. I have no faith that it will actually cure me, so is it worth the fight? Should I just sit back and let the NHS turn me into tree fertilizer by default?
The alternative is to use every bit of ammunition I have in one last glorious "over the top" moment. I can certainly get to a lot of people who would scare the living daylights out of a little trust like Medway. I have no qualms about doing potentially irreperable damage to their reputation, which is amongst the lowest in the country to start with.
I went to ask the trees. Spent an hour sitting on a log at the top of the hill as darkness descended and the wind increased.
Passive acquiescence in the hope that the NHS will do what it is supposed to do, keep fighting as I have been for the last 2 or 3 months, or just go for maximum damage to provoke action?
I know I should sleep on it before either publishing this, or making a final decision, but I have given up being indecisive.
If no letter arrives in tomorrow's post, the nuclear option it will be................................ One final go, but this time I will not be nice and will not care who in the NHS gets upset or hurt by the fallout.
A song especially for Medway Hospital and its contents.......
https://www.youtube.com/watch?v=4QbUSjnhv6M
There are three options that I can see:
- Give in, let the NHS and /or nature takes its course.
- Keep doing what I have been doing
- Go for the "nuclear" option
The NHS expects people to be acquiescent and have faith that it will act in their best interests. A fallacy which is peddled by NHS managers, clinicians and politicians alike. It is an organisation which is driven by the need to protect its own interests and those of a select few within it (mostly doctors); it has very little interest in people except unless it gets found out. If I was a "good little patient" and had allowed it to proceed at its own pace, I would probably still be waiting for a diagnosis, let alone anything else. But (done it again, now started a sentence with "but" twice in a lifetime!) I am not a patient "patient". I have pushed, threatened and generally made a nuisance of myself in an effort to get a moribund organisation to do what it is meant to. Then I tripped up.
My mistake was to trust a consultant when he told me that I would be seen by the next one in the long line within a fortnight. I sat back and waited...........and waited...........and waited.......Nothing!
I am not sure that I have the strength to keep fighting. The NHS has made it pretty clear that neither the organisation nor its clinicians give a damn about us population units. I have no faith that it will actually cure me, so is it worth the fight? Should I just sit back and let the NHS turn me into tree fertilizer by default?
The alternative is to use every bit of ammunition I have in one last glorious "over the top" moment. I can certainly get to a lot of people who would scare the living daylights out of a little trust like Medway. I have no qualms about doing potentially irreperable damage to their reputation, which is amongst the lowest in the country to start with.
I went to ask the trees. Spent an hour sitting on a log at the top of the hill as darkness descended and the wind increased.
Passive acquiescence in the hope that the NHS will do what it is supposed to do, keep fighting as I have been for the last 2 or 3 months, or just go for maximum damage to provoke action?
I know I should sleep on it before either publishing this, or making a final decision, but I have given up being indecisive.
If no letter arrives in tomorrow's post, the nuclear option it will be................................ One final go, but this time I will not be nice and will not care who in the NHS gets upset or hurt by the fallout.
A song especially for Medway Hospital and its contents.......
https://www.youtube.com/watch?v=4QbUSjnhv6M
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