The NHS recently announced that Hospital mortality rates will be made available to the public within the next few weeks or so.

Rather than just publish crude mortality rates, a HSMR figure will be used. This is a ratio of actual number of deaths, to the expected number of deaths.

The 1000 Lives Campaign have published the following paper explaining what the HSMR figure is and how it can be interpreted.

 

 

Measuring the number of lives saved

The 1000 Lives Campaign is using the Hospital Standardised Mortality Ratio (HSMR) to measure hospital mortality in Wales, from which we will be able to estimate the additional number of lives saved through the Campaign.

What is HSMR?

The Hospital Standardised Mortality Ratio (HMSR) is calculated as a ratio of the actual number of deaths, to the expected number of deaths among patients in acute hospitals. In Wales, this information is being provided at a national level by Dr Foster Intelligence.

An HSMR of 100 means that the number of patients who died, is the number that would be expected. An HSMR above 100 means more patients died than would be expected, and one below 100 means fewer died than expected.

The HSMR values are calculated using a risk model based on all patients discharged from hospital in England in 2001 / 02. Using this widely used risk model, Welsh data can be compared against a fixed Wales reference point – the year 2001. Figure 1 shows the quarterly HSMR values from April 2001 to September 2007.

FIGURE 1

From April 2009, the 1000 Lives Campaign will be reporting a national figure on a six monthly basis.

Why is the Campaign using HSMR?

It is an internationally recognised method of presenting mortality rates adjusted for patient related factors such as age, diagnosis and severity. Read more, by accessing the articles below.

For further information on the use of HSMR, please email the Campaign office for the ‘The 1000 Lives Campaign and HSMR’ document.

The starting point

The Campaign has calculated a baseline rate of 76.8 in order to compare future HSMR values. It is an estimate, based on the full year period of October 2006 to September 2007.

Figure 2 shows the actual HSMR values for these quarters. Also shown on this figure are three further lines: First, there is the average HSMR value over the 12 month period, which is estimated at 76.8. It is shown as a dotted line to indicate the likely range that the real value will fall within – i.e. between 75.6 and 78.0, which provides the baseline of 76.8.

FIGURE 2

Notes

1. The first set of figures will be published on 21 April 2009. The Campaign will be reporting six monthly thereafter.

2. We will be reporting results, sometimes up to nine months in arrears. This reflects the time it takes for Trusts to submit data of sufficient completeness and the time it takes for the data to be processed and analysed.

3. The 1000 Lives Campaign (via the Wales Centre for Health) only receives an all-Wales HSMR figure. It does not carry any Trust data or any comparative data with England.

4. Any Freedom of Information requests received by Dr Foster Intelligence related to the 1000 Lives Campaign, will be directed to the Wales Centre for Health.

For further details, please email 1000livescampaign@wch.wales.nhs.uk

For further information about HSMR

Are deaths avoidable?

Vincent C 2003 Understanding and responding to adverse events. New England Journal of Medicine 348:1051-1056

Original article

Jarman B; Gault S; Alves B; Hider A; Dolan S; Cook A; Hurwitz B; Iezzoni LI. Explaining differences in English hospital death rates using routinely collected data. BMJ 1999. 318:1515-1520

Using HSMR

Jarman, B, Bottle, A, Aylin, P, Browne, M. Monitoring changes in hospital standardised mortality ratios. BMJ 2005;330:329.

 

Link to the original article titled HSMR Baseline 06 04 09

http://www.wales.nhs.uk/sites3/docmetadata.cfm?orgid=781&id=118237

After a very uncomfortable few days my throat and oesophagus have finally settled down.

On the 14th April I popped into the hospital for an eye test to check for Keiser-Fleishcer rings, an indicator for Wilson’s disease. Apart from having to have my pupils dilated for a few hours after (blurry world) the results were negative. Initial frustration led to relief. It’s frustrating not knowing what I have, but to get wound up and wishing you have a disease isn’t the correct frame of mind to be in.

I’ve now arranged a follow up appointment with my Consultant on the 9th May. Hopefully he’ll go through all of the results gathered over the last 3 months and come up with something interesting.

I’ve also written to my GP requesting a referral to the Queen Elizabeth Hospital’s Liver Unit in Birmingham. Unfortunately, due to me living in a different country (Wales), my GP has to put up a case to get funding from the Welsh Assembly Government in order for me to get seen in England. It’s sad to see yet another hurdle on top of the long waiting lists.

To top it all off, I have to go through another Endoscopy and possible banding on the 13th May. Mustn’t forget to chase the ultrasound scan appointment which I have a feeling the Registrar has forgotten about scheduling.

On a good note. Initial reviews of the new Star Trek movie are very positive. I can’t wait to watch it at the imax  London on the 7th of May.

 

Findings:

So, I guess the day didn’t get off to a great start when during the night I got up to turn in bed and ended up smacking my head on the very sharp corner of my bedside unit. A quick trip to the bathroom revealed a swollen scalp with a small cut, nothing to worry about but uncomfortable none the less.

In the morning I was quite nervous. If you’re nervous, you feel sick, and feeling sick at the thought of feeling sick during the Endoscopy makes you feel sick even more. So, sick nervous wreck ridden me and quite understanding, supportive none geek wife (erase the quiet part) make our way to the hospital.

Walking into Endoscopy unit I noticed a variety of people of mixed ages and cultures. I handed my booklet that contained the consent form to the nice lady behind reception and after the formalities of confirming my GP and name etc, we sat down and started to read some of the 2 year out of date magazines. I realised then that I had forgotten my iPhone in the car, so was a little sad not twit live.

After 20 minutes I was led into a room where a friendly Scottish chap went over the procedure and made me sign my life away. I was number two on the list so the wait shouldn’t be too long. I waited a little more than 40 minutes before a nice nurse called me in for the procedure.

The room itself was full of the usual things, a computer screen, pulse, BP monitoring machines and few other non disrupt computers. I was told to lie down on my back sitting up at first. I noticed another Phillipino male nurse at the back of the room filling a extra large syringe with a dark blue ink like substance. A brief thought fluttered around, maybe the ink like substance is the ‘throat spray’, I felt a little slicker.

The consultant that was to conduct the Endoscopy again walked me through the procedure. She said that we would use the throat spray for the initial run and that if any Varices were detected, we would repeat the process and ‘band’ the Varices. Sedation would be advised if the latter was required.

At this stage, I was pretty confident that the initial investigation would not lead to anything and I would be discharged. I mean, I’ve been playing tennis, badminton and even squash, it really hasn’t been a problem and I haven’t felt anything untoward.

The nurse asked me to lean up whilst she declined the bed. A quick ‘What about the spray’ reminder from the nurse at the top of the room put a stop to her antics and a spray was subsequently squeezed in my mouth filling my throat with a sour cough medicine like taste. The bed went down and I was told to lie on my left hand side. I was asked to bite around a piece of blue plastic and concentrate on my breathing, ‘breath through your nose and out through your mouth’. As the camera entered my throat, a natural gagging reflex kicked in, all the while the nurse was asking me to ignore the fact someone was trying to shove a vaccum hose down my Oesophagus and concentrate on my breathing. A few minutes into the procedure, I over heard the consultant say that yes there were Varices present. At this point, whilst gagging, I felt like the whole world had collapsed around me. My cirrhosis was real. Tears rushed down my cheeks as the camera was led further down my throat. Another nurse prepped my right hand for the sedative that would be administered ready for the banding.

The first camera was led out and I was so relieved. The consultant spoke and said that there were 4 varices that had been detected. I asked whether instead of banding we could perhaps use medicine to reduce the portal tension caused by the Cirrhotic liver.  She advised me that the best remedy would be to band the Varices, after a few weeks the rubber bands would naturally fall out. I felt backed into a corner, and really didn’t have a choice. The alternative was to leave the Varices intact and open myself up to potentially life threatening haemorrhage which could happen anytime.

So under sedation, I swallowed a bigger camera and went through the whole process again but this time I felt very little discomfort….like hell I didn’t. The sedation actually didn’t work. I felt all the same and the whole process made me gag and feel sorry for myself. 10 minutes later the whole thing was over and I was lying in the recovery room.

Upon discharge, which incidentally, if you go for the sedation option you’ll have to have someone with you for the next 24 hours and you’ll also be advised not to drive or operate heavy machinery. The nurse gave me a prescription for some Antepsin (sucralfate), to line the stomach and Oesophagus preventing acid affecting the banding the Varices healing process. She also made another appointment for me on the 15th May to go through the whole thing again, yipee.

Looking through the report below, the four Verices that were detected were of Stage 2.

 

The consultants report as as follows:

Timing	This was a procedure and this examination had been requested on a “soon” basis.
Indication	Screening for Varices
Scores	ASA Status 1 (i.e a healthy person).
Medication	Xylocaine Throat Spray 10 puff(s) and maidazolam 3mg The patient was awake during the procedure. The patient appeared moderately uncomfortable during the procedure.
Oesophagus	4 Varices, Grade 2 oesophageal varices (easily seen and did not disappear completely on inflation of the oesophagus), in the lower third of oesophagus, non-bleeding and without stigmata of recent bleeding.
Stomach	Portal Hypertensive Gastritis.
Duodenum	Normal.
Procedures	Ligation: 4 band(s). Site(s): in the lower third of the oesophagus.
Complications	None
Treatment	Sucralfate 1g QDS.
Followup	Repeat Procedure in 3 week(s).

Comments:

4 bands applied to his varices, he requires a further endoscopy in 3 weeks. 1 week of sucralfate suspension.

 

By morning I should have forgotten what I have wrote here.

PillCam ESO

So,  finally after a couple of months of waiting I am to have my Endoscopy in the morning. So get this, I’m going to be the fist patient in Wales to have the new PillCam Endoscopy performed. I know, it sounds like something out of a scifi movie, but it totally blows my mind.

I’ve been told not to worry. Initially they did ask me whether I wanted to have the throat spray or the local anaesthetic. I had opted for the  spray but they’ve since informed me that no type of anaesthetic is required for the new procedure. You have no idea how happy that makes me feel. Anyway, on the plus side I’ll be out of the hospital in 20 minutes.

PillCam ESO typically is used to diagnose patients suffering from esophageal disorders, such as esophageal varices, which can result in fatal bleeding, and Barrett’s esophagus, which is an early indication for esophageal cancer. The PillCam ESO procedure takes 20 minutes or less and is painless for the patient, requiring no sedation, intubation or insufflation.

A patient fasts for two hours prior to arriving at the physician’s office. Once he or she arrives they are the patient is prepped for the procedure. This includes attaching the sensor array to the patient’s chest and the data recorder to a belt around the patient’s waist. Once these tasks have been completed the patient will be given a glass of water to help swallow the vitamin-sized pill while lying on his or her back.

 

How the Procedure Works

After swallowing the PillCam ESO video capsule, the patient is raised by 30-degree angles every two minutes over a six-minute period until he or she is sitting fully upright. The entire procedure takes approximately 20 -minutes, and the pill passes naturally with a bowel movement usually within 24 hours.

Images are downloaded by the physician to the Given workstation for review and diagnosis, or the data can be sent to an experienced reader through Given’s VueSpan reading service for interpretation.. The proprietary RAPID software installed on the workstation contains an image atlas to help facilitate the analysis.

The PillCam ESO video capsule measures 11 mm x 26 mm and weighs less than 4 grams. It contains an imaging device and light source at both ends of the video capsule and takes up to 14 images per second, or 2,600 color images, as it passes down the esophagus during the 20-minute procedure.

I’ve pasted some of the types of images that are broadcast below.

 

“Given Imaging” an Israel based company who produce the PillCam ESO, more information can be found on their website.

 

P.S Do you really think I’m going to have this done on the NHS? Unfortunately the PillCam is only available in the United States and Germany. I’ll have to ingest this instead…

 

Finally my appointment has come through from Ophthalmology for my slit lamp eye test. This is to see if they can detect Wilson Disease. I guess this is good, but why two months for a simple procedure? The one I am waiting for is the Endoscopy , again it’s a long wait but it’s important that this is done in order to detect any Varices if present.

My biggest challenge at the moment is keeping my mind in order. The last couple of months I’ve somehow shifted from my proactive realist approach to a more laid back attitude. Thankfully my recent visit to the new Cardiff library which lead to me picking up a book by Howard J. Worman M.D. Titled ‘The Liver Disorders and Hepatitis Sourcebook’ has put me back on track. It’s a very comprehensive book covering a huge range of liver related topics. A lot of my questions have been answered but one of the things that stood out was that determining the right time to be referred to a liver transplant unit is not an exact science. In fact, Dr. Worman suggests that you should plan to be referred at least two years in advance of a liver transplant.

So what to do? The first thing is to get referred to a more specialist hospital. I was supposed to do this before but again like always my GP convinced me to stay in Wales. Now he’s actually asking whether I’ve looked at some other clinics. I guess I better get on with it.

More recently I’m starting to view my life as a kind of Lift. We sometimes go up but mostly we go down. I think it’s the default setting, so unless we ourselves press the up arrow, life doesn’t really mount to anything.

Since this downward trend started, I’ve sat at times watching the numbers go down. I think a part of me just thought to let this happen as I can’t really do anything to stop it.

Well, I’ve been battling with doctors, consultants and at times myself to really quantify where my future lies. I’ve now stopped doing that. I’ve decided to not just press, but hammer the UP button.

It’s about time too.

Back from the doctor with a copy of the report from the hospital outlining the steps forward which I have discussed in previous post.

Luckily by requesting my bloods on Monday I’ve had them back this morning.

High/Low Liver Function Test (LFT) results are as follows:

 

Test/ Normal Range	23/02/09	06/01/09	10/10/08	02/09/08
Serum Albumin 35 – 50	35 g/L	36 g/L	33 g/L ~	30 g/L ~
Serum Alkaline Phosphate 30 – 115	245 iu/L *	254 iu/L *	312 iu/L *	253 iu/L *
AST Serum Level 5 – 45	138 iu/L *	142 iu/L *	203 iu/L *	148 iu/L *
Serum Bilirubin Level 1 – 22	21 umol/L	17 umol/L	41 umol/L *	37 umol/L *
Serum Globulin 20-35	40 g/L *	47 g/L *	45 g/L *	Not Taken
Gamma-G.T 5 – 48	Not Taken	685 iu/L *	659 iu/L *	Not Taken
* High ~ Low

 

Looking at the table, the overall trend is downwards which in the majority of cases is good. The only result to contradict this pattern are my Gamma G.T levels.

I will post the report once I have had a time to digest it. The verdict is still Cryptogenic though and in the ultrasound scan the spleen was enlarged pointing towards some portal tension hence the need for an Endosocopy.

My GP also asked whether I have had any thoughts of being referred to other clinics for a diagnosis.  In previous conversations he was quite dismissive when it came to me seeking or wanting to be referred to more specialised clinics.

The past week or so I’ve been feeling and looking very yellow. Conscious that my billirubin levels were elevated 3 weeks ago I’m anxious to find out what they are now. Am I getting more jaundiced? I’m certainly feeling tired with the occasional spasm of pain in my shoulders etc.

Every morning I run like a pooch to the door waiting for the postman to visit, and every morning I’m disappointed to find that the hospital hasn’t sent me my Endoscopy appointment yet. I guess I should chase them without annoying them.

So my geeky distraction antics for the week are as follows:

1. Develop  my geeky new soon to be launched word press blog (I’m sure many people do the same every second)

2. Have a look at some of the new opensource shopping cart solutions, especially Magento.

3. Try and play Quake Live

4. Drool over Street fighter IV

5. Develop an iPhone application (with a wee help)

6. Upgrade to iLife 09 on my MAc

I need to get out more.

Ever since I was diagnosed with acute Cirrhosis of the liver my wife has been quite rightly going through a rollercoaster of emotions. This rollercoaster still hasn’t ended and with time may nose dive before climbing again but we’ve both learned in our own way to deal with these feelings.

It’s valentines day today so I have managed concoct the following ingredients to bake a loving day celebrating our companionship, marriage and above all to say thanks you.

 

1. Stick many V day lovey dovey cut outs around the house

2. A fantastic geeky google Vday card.

3. A single rose wrapped in some very fetching plastic and black mesh stuff.

4. A day out exploring the city of Bath.

5. To top the day off, a nice meal cooked by none other than your’s truly.

 

Thanks Sam, I hope you enjoyed today. Thank you for all of the love and support you have given me and the support which I will undoubtedly need in the future.

Since my Penicilliam challenge tests 2 weeks ago I have been waiting for the letter informing me of my Endoscopy date. So, this morning when I awoke the words “Pull your finger out” rattled around my measly excuse for a brain.

After a quick dig around for the Endoscopy departments direct phone number I gave them a call. I asked when I would be expecting my appointment to arrive. The nice lady said that the referral only arrived yesterday (12th Feb) and I should expect something mid April. The only way this appointment date was likely to change is if the consultant would prioritise it. At the moment the consultant has 60 referrals in his inbox to acknowledge.

As you can imagine I am a little bit upset that it’s taken 2 weeks for an internal referral to get from point A to point B. To top that off, there is no way I can top up the procedure privately like I did with the Biopsy.

I guess these things are here to test us….and my Cirrhosis. Wonder if you can buy a home Endoscopy kit on Ebay?