IBS Network

Bowel transplant patient morphs into patient NHS Commissioner

I thought that it was time I wrote down a summary of where my life was in bowel transplant land. In doing that I realised that my role as a patient was changing. Was that down to me or down actually to the changing nature of the NHS here in the UK? I will let you decide. A warning this is a long post 

So with a backdrop of life being so much better than it was prior to my transplant this is my current daily and weekly schedule.

1.I take 32 tablets per day. Whilst the biggest single amount is Imodium the most important ones remain my anti-rejection meds tacrolimus. This doesn't include any probiotics I still take.

2.I take 3 vitamin and trace element infusions per week over a 6 hour period. I’m not on total parenteral nutrition (tpn as we all call it) but need these to ensure my levels stay stable. I have to say that they are doing a great job in that regard.

3.I inject via my picc line anti sickness medications twice a day. Without these I would be lost although I think my medical team worry about over reliance but that is another story.

4.I bolus in via a mic key button about 350ml of enteral feed each day.

5.I connect about 2 litres of fluid via my mic key button 5 times a week. This week if I am honest I have not done as much. One of the on-going discussions is getting me to drink more so I have less reliance on this. It is all linked to stomach issues which I will talk about later.

As I said earlier this may seem a lot to some but actually to me it is life and I really don’t mind. It has become routine and as I keep saying I would go through transplant all over again to still be in this position because it was so much better than before.

Just to bring you up to speed with where I am on my next stage of treatment let me tell you my issues and what is being done to solve them. Again excuse the list but it seems a so much clearer way for me to explain things.

1. I chuck up (sorry vomit to the educated ones out there) about 6/7 nights. It really is no big deal as what happens is that I eat well during the day but feel the stomach filling up and not emptying. My last pill cam study showed that the pill stayed in my stomach for 4 hours. So if you work that out things are generally going very slowly. What this also means is that I pretty much constantly feel sick.

2.When I eat I run. No I don’t mean that I put on my Nike trainers and something in the food makes me want to go for a jog. No I run to the toilet. My surgeon believes that this is a gastric colic reflux in part caused by the stomach expanding and pushing on the colon causing the sensation that I need to go. It all makes sense except the fact that either I do go or I don’t quite get there in time if you catch my drift.

3.This point is a little bizarre even by my own standards. Despite what I have just written there are days when I don’t run, in fact may not go at all. The trouble is this causes pain and then when I do eventually go I get terrible pain at the site of where my stoma and hernia was situated. This has been the cause of a little bewilderment but the transplant team and there is no real sign of a blockage there yet I can see that area literally pulse as things go through. I am going to have to capture that on video at some stage.

4.The final issue concerns my joints. For some reason every day they lock. No not all of them but it could be my hands, foot, fingers and occasionally the back. A shooting pain runs through the joint and then goes about a minute later leaving a dull ache.

Anyhow despite these issues there is a clear plan in place to tackle everything. Having listed them all it probably sounds like I am in a bad way or moaning, I am not but hey I have always tried to be honest with what is happening so that means you get a warts and all accounts. However it is how we tackle the problems that is key. As my surgeon has always said we need to know early so we can treat them. Oh by the way this is the perfect time to give you a special twitter account for you to follow @TXSurgeonX – check this person out. So what is the plan?

I am not going to bore you in this post with everything because I want to focus on one area. Why? Well hopefully that will become obvious as it raises a question that goes right to the heart of where the NHS is going. Read on and then tell me what you think.

In order to sort out the vomiting I am going to hopefully have a gastric pacemaker fitted. Check out this video. Now my understanding is that in normal circumstances you go to the hospital that can do the procedure and once assessed and agreed they perform the operation. Oh no this is exactly what happened.

1. My transplant surgeon felt that the pacemaker was the right next step and I agreed.

2. We identified the main unit where this procedure happens and made contact with the relevant surgeon.

3.We were told that each patient required individual funding for the hospital to operate and that there was very little chance of the hospital getting this in the near future. I was advised that there were 12 patients ahead of me none of whom had yet received approval.

4.An anecdotal conversation with a Professor who used to treat me advised me that his hospital had actually received funding to do the procedure. Queue applause and relief especially as I assumed that meant we could get going. The Professor gave me contact details and I immediately emailed the relevant person.

5.This doctor then referred me to another Professor in charge of the procedure and I chased to make an appointment.

6.I spoke directly to the secretary who said that my appointment had been graded as urgent and I would receive an appointment quickly. Did you realise that your doctor now grades your appointment? If I am honest it does make sense as this cardiac example indicates. However in truth I never knew about it – do you know this happens?

7. I phone the outpatients department to chase up my appointment a few days later explaining that the appointment has been graded as urgent and chasing my time. Nothing exists on the computer and there is no record of any appointment. After 4 attempts at trying to get an appointment I spoke to the Professor’s secretary who told me “oh no we don’t do this centrally, you can book with me directly” Oh boy here we go again.

8.Set off the fireworks, hang out the flags and let’s have a party I finally get my appointment and then the bombshell hits with the following sentence. “Mr Seres you now have to apply for funding.” Pardon I say, I assume you mean that the hospital does this. “Oh no you have to do all the work yourself and please bring in the completed application at your appointment” Pardon, you mean the patient has to apply? “Yes but I can help you” oh fantastic how? “Here is the link for you to follow” And with that my journey in to the world of applying for funding for my own procedure started.

I regard myself as a relatively intelligent person. I will use the term intelligent in the loosest sense I promise but I had no idea where to start. I was presented with this link. So I downloaded the document and tried to make head or tail of things. I did double check that I was supposed to be doing this by texting the original Professor who came back with “don’t be silly that shouldn’t be down to you” Sorry Prof but it was.

The link led me to trying to understand some of the terminology and so I had to get in touch with NICE and see what their guidelines were. That led me here. At this point I had two windows open in my browser and a word file and I started writing.

I got to box 4 out of 20 and it said treatment requested. Easy I thought – a pacemaker required. Oh no it isn’t just any old pacemaker no it has a specific medical term and that was exactly the problem I faced across the form. You see I was able to write some of the answers down but then I realised that it wasn’t in the medical language required by those who needed to sign it off. I then decided that I would email the address at the end of the form to ask for assistance. Rather stupidly I thought that I would get an answer. Don’t be silly Michael that would be logical.

I then tried calling but you try finding a number for someone who can answer a question. Four departments later and forty minutes on the phone I got nowhere so decided to keep going alone. A gastric pacemaker became a gastro electrical stimulation process, my vomiting became idiopathic gastroparesis and Botox injections became intrapyloric botulinum procedures and so it went on.

Having waded through that the killer question hit. “Please provide estimate of the incidence and prevalence of this condition: how often would you expect to request this treatment for this condition at this stage of progression of the condition for a given size of population.” Sorry but what the F..k does that mean and how the hell am I supposed to answer it. Well after 10 web browser pages were open I managed to cobble together an answer that I hope is correct.

Finally 2 weeks later I completed the form. In truth I think I have completed the form but I won’t know until I get to see the Professor on Friday. My application for this procedure is being treated as an “exceptional circumstance” and according to everyone will get passed. But how do I know that. According to NHS England this procedure will cost £17,000 and from what I can see I fall in to the right category.

According to the department doing the surgery it will take up to 6 months to make a decision. THAT IS WHAT THE DEPARTMENT BELIEVES AND THEREFORE THE INFORMATION GIVEN TO A PATIENT. When I spoke to NHS England and read all the materials it says that a decision will be reached in 23 days. I can wait 23 days I cannot wait 6 months and if that proves to be the case then my transplant surgeon will be forced to do a more complex procedure to solve my problem. How silly is that.

Now as I said I don’t know if this is a one off incidence or whether this is the sign of things to come for our NHS. I am incredibly lucky in that I have navigated my way around this. What about those that can’t? I worry and wonder how they might cope.

Now I apologise for this lengthy post – if you haven’t yet dozed off I hope that it helps and is of interest. If you have dozed off then to be honest I don’t blame you.

Till next time

1 Reply

Wow. well, it is interesting to hear your detailed description of how one organ affects all the others. When I try to explain this to the many "specialists" they look at me blankly. My guts have an effect on my knees? HUh?

By the time you get your procedure, maybe you'll have healed yourself. :) Good luck to you!


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