Category Archives: NHS patient experience;

A Patient’s Dilemma(s)

When 10th October 2018 arrived I had reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself  the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.

Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.

…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it  reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)

I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case  I suggested that a blood test might be a good idea (having not had one for over a year).

When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.

Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.

…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through  multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.

…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.

The Importance of Follow-up Letters

Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).

Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.

The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.

The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.

I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.

At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.

A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.

She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.

A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.

The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.

From the above I’d like to pass on two thoughts : 1) that keeping your own record  is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.

(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)

..but why the Octopus?

When I was looking for a book title and a name for my rejuvenated blog I wanted something slightly “off the wall”. Whilst I was writing the chapter about surgery looming I came across the consultant’s explanation of the CT scan he had in front of him. “It looks like you’ve got an octopus in there.” That set my imagination running and I pictured the scene in theatre where the surgical team had “released the octopus”, cut out the offending bit and then wrestled the remainder back, safely, into my abdomen.

Search for title over and seed of idea for book cover sewn.

As I neared the end of writing it occurred to me that there was a second octopus to be wrestled. It’s potentially a problem for all of us that suffer from chronic illnesses, namely, managing our route through the multiple tentacles of the NHS system with multiple consultants, procedures, specialities and clinics. Add to this the lack of a universal patient record system that can be accessed in different hospitals and it is apparent it’s not neccesarily a simple process.

Life was simple when being treated by one gastro team at one hospital. It wasn’t until 2010 that another hospital entered the equation as my local hospital were unable to cope with the complexity of the forthcoming surgery and referred me to St.Thomas’.

This calls for a diagram –

My Personal Octopus

Some “tentacles” act in a co-ordinated manner; others seem to be a law unto themselves. Some tentacles communicate well with the others, unaided; others need a helping hand.

For example, if you’re booked to go for a procedure, let’s say an MRI scan, then it makes sense that your next gastro appointment is after the radiologist has written the follow-up report. Similarly, if you’ve had biopsies taken during a colonoscopy, you want the results to be available before you meet your gastro. This is not rocket science but if not co-ordinated then you simply end up wasting valuable appointments, consultant’s time and, just as importantly, your own time.

In the past I’ve let the system take its course but with mixed results so now I like to give it a helping hand. This is getting more difficult with the apparent demise of the dedicated medical secretary. For several years, when the frequency outpatients appointments and procedures had reached its height, I had the pleasure of dealing with a truly exceptional one. Let’s call her Sally. Any issues would be quickly resolved by a  simple exchange of emails. Sadly she left the NHS.

Nowadays I contact my consultant directly, but sparingly. I don’t particularly like doing it as I know he is already exceptionally busy. I can justify this approach to myself as in the long run time/resources will be saved by avoiding abortive appointments.

I suppose you could now say that I am “massaging the octopus” rather than an all-out Greco-Roman grapple.

 

 

 

The Jigsaw Diagram

If you have read some of my previous posts or followed me on Twitter it is likely you have seen my “jigsaw” diagram in its various incarnations. I drew it, initially, to try and understand the relationships/causes between the various conditions I have ended up with. It then dawned on me that it would a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This first illustration is an early version.

Early version of diagram

I attached it to a Tweet during a #patientchat to illustrate how I like to communicate. The very positive response that I received from both patients and doctors was very gratifying. There were a number of requests for the template I used. I have therefore removed the text that was specific to my case and saved the file in both the original Keynote format and a Powerpoint format.

If you click on the links below you will be able to download the appropriate file. Please feel free to use them however you wish. I hope you find it useful and would be grateful if you could credit me if you use it.

Medical Jigsaw – Keynote Template

Medical Jigsaw – PPT Template

…and then someone set me the challenge of making an interactive version. Taking the initial, simple diagram I added many more “nodes” that when clicked would open up the relevant documents or test results.

Latest edition used for interactive version

The link below will take you to an html version. It was not too difficult to set up but needed a knowledge of “mapping”. The most time consumng part was removing personal details from the documents.

http://www.wrestlingtheoctopus.com/MedRec

….and Finally

In September 2018 I had reason to visit my GP surgery. I knew it would be a new doctor I was seeing so went clutching the diagram in my hand. The GP found it useful. I was ooking at it upside down from where I sat and it dawned on me that i had crammed TMI on that one sheet. There was a lot of detail that wou;d be of interest to a colorectal surgeon or gastroenterologist but was superfluous to a GP. And so the latest version was born and colour coded to highlight – procedures, results, medications and referrals. Can’t wait to try this “new, improved” version for the first time and see what reaction I get.

20 things that can help you survive Hospital

Here’s my list of twenty things that have made my stays in hospital (UK NHS – 2 bowel operations; 1 emergency admission with 2 weeks recovery; 1 day/night in A&E) more bearable. I wanted to pass them on in case it helps to improve your “patient” experience. If you’re already an old hand at the hospital game you can, no doubt, add at least another ten.

No.1 HEADPHONES – unless you are lucky enough to have your own private room then the hospital environment will be noisy. There are lots of times when you really want to be able to drown out the surrounding ward noise. I like to take with me two pairs of headphones – in ear and over ear. Over ear will give you the best isolation from the ward noises but you can’t comfortably lie on one side with them on and your ears tend to get hot! The in-ear ones aren’t as good for keeping out external sounds but you have more choice in your sleeping position. (If you can afford a good set of noise cancelling headphones then all the better)

No.2 iPOD OR SIMILAR – I know that most phones have the ability to store and play music tracks but to prevent running the battery down too quickly I prefer to take a separate music player.

No.3 EYE MASK – like the ones you have for air travel. It’s very rare to have all the lights off in a ward and even if they are, the nurses will be frequently checking on the more poorly patients so the over bed spotlights will be going on and off throughout the night. That’s where the mask comes into its own. (Our local hospital has taken the initiative and started handing these out to patients.)

The best time for dozing is mid-morning, after the doctors have done the ward round and you’ve had a washdown/shower and your bed is freshly made. A close second is early afternoon before visiting time starts.

No.4 SHOWER GEL/SHAMPOO – sometimes these are available in the hospital but there’s nothing like having your own, favourite brand to keep you in touch with home. It’s said that smell is the strongest sense for recalling memories. There is one particular shower gel that I bought ready to go into St.Thomas’ and I’m still using that “flavour” today. Every time I catch that fragrance it immediately transports me back to the first shower I had post operation.

No.5 PYJAMAS AND DRESSING GOWN – the admission instructions may ask you to bring in your night clothes but I have found that pyjamas are usually available anyway. That’s fine if you’re not fussed about the colour. After my reversal operation I was issued with bright orange pyjamas, Guantanamo Bay style. I try and use NHS pyjamas for a few days after an operation in order to give anything that might be oozing a chance to stop oozing and then it’s into my very stylish M and S ones for the rest of the stay.

The dressing gown is a must. Not only can it give you a bit of extra warmth when sitting about but also covers up that embarrassing gap at the back of your medical gown where you haven’t quite managed to fasten the tie-ups.

No.6 BOOKS AND MAGAZINES – there will be times when you’re not dozing but you really don’t want to a) watch the truly appalling daytime TV, or b) you’ve gone boss-eyed from staring at your phone for a little too long, or c) someone has made a comment on your Facebook that has upset you. A decent book or some magazines, preferably with lots of photos and no difficult text, are good ways to pass the time at your pace. I was given a volume of Sherlock Holmes short stories and found that each story was just the right length for reading before needing a rest.

No.7 CASH – taking a large amount in with you is not a good idea but it is worth having, say, ten pounds in case you want to buy a magazine or some toileteries from the trolley that visits the ward every couple of days.

No.8 MAKE-UP – for anyone who likes to wear make-up (I’ve done the “Political Correctness and Inclusivity” Course) I’m told it can make a big difference. I’m a bit out of my depth here so I’ll quote directly from a comment a fellow patient sent me  :

“I think this is probably a bit more on the girly end of things, but I’ve found that taking good care of myself (when possible of course) in hospital helps keep my morale up. I think the sicker you look, the sicker you feel, so if you have the energy it’s worth making a little effort. I bring my nice robe so I don’t need to wear the hospital gown, my favourite perfume, and my own shower stuff in little bottles. I bring a tiny bit of make up so that when people visit I don’t need to deal with them telling me how tired I look (I’m in the hospital, duh!) Bottom line, having your own things makes everything feel better.”

No.9 FAVOURITE SNACKS
– after an operation or maybe a bad flare-up you may need something to help you get your appetite back. If you have some favourite snacks or chocolate bars etc. pack a few in your bag. Some hospitals will provide snacks anyway but I don’t know how common that is. The two wards I spent time in at St.Thomas’ always had a good selection freely available, at any time. You only had to ask!

No.10 SANITISING WIPES
– with all the nasty infections that can appear in hospitals nowadays – such as Mrs.A – you may want some sanitizing wipes to for any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected.

No.11 HAND CREAM AND LIP BALM
– the atmosphere in the wards is often very dry so creams and balms will help you keep your skin feeling good.

No.12 OVER BED ENTERTAINMENT UNITS – I’m not sure how widely these entertainment units have been rolled out in NHS hospitals. If you are going in for elective surgery it’s worth ringing the hospital or checking their website to find out if they have them over each bed.

The units provide a variety of services – some free; some paid for. It varies from hospital to hospital. In both St.Thomas’ and East Surrey hospitals, local outgoing telephone calls are free, as is the radio. If you want to watch TV, access the internet or play games you have to pay for those services (but I suppose if you have a tablet and there’s good 3G/4G access you won’t need any of this). The fee for 2 weeks worked out a lot cheaper per day than buying each 24 hours at a time. The trick is predicting how long you will be in for.

The over-bed units should have their own headphones supplied but these are usually very flimsy i.e. not good at keeping sound out or missing.  I’ve found using my own headphones a better bet.

No.13 LISTS – pen and paper – or you could use an app on your phone or tablet. I have always found it useful to write down any questions I want to ask the consultants on their ward rounds. I’ve tried keeping a list in my head but when you are confronted by the consultant and a gaggle of junior doctors, early in the morning, it’s easy for all thoughts to just disappear.

No.14 CANNULAS
– if you have to have a cannula and, let’s face it, it’s pretty much a certainty, don’t let a doctor put it in. No matter how much practice they claim to have had they are never, ever, as good as an experienced nurse. In the past I have actually said to a doctor “Are you sure you are good at inserting these things?” He assured me that he was but an hour later I had to have it redone as there was insufficient flow through it. This has happened on several occasions so I stand by my “never trust a doctor with a cannula” statement.

The positioning of the cannula is governed by where a good vein can be found but if at all possible try and avoid having it on the bend of the arm as you will frequently be interrupting the flow when you move your arm. If you get a choice of which arm to put it in remember you will have eat meals and manage in the bathroom with it connected.

No.15 PHARMACISTS
– when it’s time to be discharged I can guarantee that you will be ready to go but will then have to wait several hours whilst pharmacy get the correct medications up to the Ward and you can finally leave. If you make friends with pharmacist on their daily ward rounds you can pre-empt that wait by persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge. They are also the best person to talk to about any new medications you’ve been prescribed and possible interactions.

(If you live near the hospital you may be able to go home and then get someone to return later to pick up your medication. You may even find that you’re being prescribed over-the-counter tablets anyway, such as paracetamol or Ibuprofen, so it would be quicker to go into your chemist.)

No.16 PAIN – if you start feeling pain or a different pain don’t be brave and keep it to yourself TELL THE NURSE. It may be nothing and you can be given painkillers to help. On the other hand it could be something that needs attention and the sooner that attention starts the better.

No.17 INHIBITIONS
– try and lose any inhibitions you may have about discussing the more intimate details of your condition with the medical staff. You may notice something different about your body or what comes out of it. Again it may be nothing or it might need further investigation.

No.18 SUSPEND NORMALITY – the hospital environment is very different from your usual environment. Sometimes you may feel completely out of your comfort zone. If you can get into the mindset of suspending your normality and accepting a different regime then your hospital stay should be more bearable.

No.19 WHAT HAPPENS IN HOSPITAL STAYS IN HOSPITAL – not everyone will appreciate your description of the procedure or surgery you have just undergone. If you want to go into the gorier details then best avoid regaling your visitors with them or your friends when you get home. If you really must unburden yourself then try one of the Forums or Facebook Groups that is dedicated to your condition as you will find a, mostly, willing audience.

No.20 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re high on drugs, have tubes coming out of every orifice and your future is uncertain but if you can do your best to keep your sense of humour and treat the doctors, nurses and other patients with courtesy then it will make your stay a lot more bearable. Of course you may be one of those unlucky individuals who has had a humour bypass in which case you should get on well with some of the doctors I’ve met!

That’s the revised Top Twenty (One). If I was being rushed into hospital and only had time to choose just one physical item to take in with me it would be the headphones as they give you the best chance of getting some sleep in a noisy environment. The one behaviour I would adopt is a combination of the above but can be summed up as “acceptance that a hospital regime will probably be completely alien to your usual way of life but you do not need to lose your sense of dignity, humour or courtesy”. If you feel any of these are being compromised – complain.