Crohn's Disease Forum » Your Story » Managing your condition is not just about treatment

07-25-2013, 08:01 AM   #1
michaelseres's Avatar
Join Date: Feb 2012
Location: Radlett, herts, england
Managing your condition is not just about treatment

Wow, so much has happened in my bowel transplant world where to begin? Usually I like to focus on what has been happening to my health from a physical perspective. However I want to devote this post to telling you what it has been like managing basic things such as medications from a patient perspective. Sharing my own frustrating episode surrounding my obtaining my routine anti sickness mediation highlights what is wrong with the current situation in England and why being a long term patient is about so much more than just having ongoing treatment. Crohn’s Disease, bowel transplant – pah it’s got nothing on trying to get a prescription sorted.

Let me quickly set the scene. I have been taking cyclazine and ondansetron injections via my picc line for a number of years. All routine and without them…..well you can imagine. Post-transplant I have been prescribed them by my hospital despite the fact that they don’t actually get paid for doing this.

What I discovered is that my hospital gets paid a fee by NHS England for doing the transplant and then for providing ongoing treatment for three months. You see a bowel transplant for now has been lumped in the same category as most other transplants and 3 months should be fine. Sorry, point of order m’lord – who decides if 3 months should be fine? A doctor or a manager? Heaven forbid that they check with patients. What should then happen is that ongoing care is transferred to my local GP who via the Clinical Commissioning Group fund my treatment. The problem is that a bowel transplant recovery can often really start after three months as in my case. My initial stay post-surgery was 3 months and as you know (well if you read my blogs you would know) I go back to Oxford for follow up every week.

So going back to my meds, my hospital had continued to supply my anti sickness because they didn't want me to go without. At the same time a letter went to my GP to ask them to prescribe them and at that stage the hospital effectively handed over the supply of these meds and all my other ongoing medications to the GP. This is the turn of events in chronological order.

1. 1, My GP decides that it will be difficult for them to prescribe the ondansetron as it is too expensive. At the same time they also decide to prescribe me my anti-rejection meds on a 3 week cycle.

2 2. A subsequent meeting with GP tackles the anti-rejection meds or so I thought but the question of my anti sickness medication still hangs in the balance.

3 3, I then get prescribed trace element infusions to be funded by my original (pre-transplant) hospital. Why them I hear you ask? Well because the account still remained open so it was easier to get them to restart the delivery than set up a new account.

4 4, 8 weeks after they were due to be delivered I finally get my trace element infusions and at the same time the hospital to home company asks me what other ancillaries I need. Guess what – on the list they send me are my cyclazine and ondasetron.


6 6. So me the little old patient thinks fantastic – Oxford have passed my med requirements to my GP. My GP doesn't want to prescribe one of them and now the hospital to home company is saying they will. So I place my order with them.

7 7. 24 hours later my anti-rejection meds turn up at home and little old me is thinking happy days.

8 8. 4 weeks pass and I need the next batch. I ring them up and ask them to deliver a few days earlier than planned as I was going away on a charity bike ride. (more on that later).

9 9. Having heard nothing back from them I chase it up again to be told they cannot deliver these meds. Why I ask? Well we don’t have a prescription so we don’t know who is paying for them. What do I do? Ask what I thought was a pretty easy question “well who gave you the last prescription?”

1 10. The answer wasn’t actually what I expected. No the answer was I don’t know. I follow that up with “well what does the prescription on the screen say?” hard question or not? You decide. The subsequent answer to my phenomenally difficult question was – I don’t know it is not on my screen any more. Can you get it? – I butted in. No came the response I will have to ask the IT department.

1 11. After that exchange I then phone Oxford and ask if they had set up historically this hospital to home prescription service. They told me no but felt that it lay with UCH. However they said that my GP should be prescribing.
1 12. Meanwhile the hospital to home service said that if I get a prescription they will supply the meds for me overnight so that I can get them before I go away.
1 13. I phoned my GP and booked a telephone consultation for the following morning. Now my GP is lovely and very helpful but said to me clearly that as Oxford was still treating me they have to pay for the meds and should be prescribing them. At this point may I refer my wonderful reader to the explanatory paragraph earlier and the contradictory advice. My GP did though assure me that he would provide an emergency prescription if I couldn’t get it sorted.

1 14. I know decide to phone Oxford back and explain the situation. They tell me that my GP is wrong and that he needs to prescribe them so back I go to the GP.
1 15. My GP, still adamant that he should not be prescribing me the meds kindly writes me a 5 day emergency script and I ask him to fax the hospital to home company so that they can dispatch them.

1 16. I then make contact with the hospital to home company who confirms receipt of the prescription but tells me there is another problem. What is it I ask? Wait for it…….”sorry but we have no authorization to pay the delivery costs so who will pay for it to be delivered?” At this point I almost lost the will to live and did what every good patient needs to do from time to time, RANT! During my rant I asked how much we were talking about and was told £70. Unbelievable.

1 17. My rant must have worked as a phone call later I was told that the meds would be delivered.
And with all of that I had the meds to go on my trip. When I came back I went to Oxford and explained to the lead pharmacist the sequence of events. What I discovered left me open mouthed. She explained so simply the sequence of what was supposed to happen and how the obligation lay firmly with my GP and funding via the CCG I mentioned earlier. They did though say that they would never again leave me without meds and gave me a prescription for the next month. My surgeon wrote again, in my presence, to my GP asking them to prescribe in future and so now let’s wait and see.

Now all of that sequence of events had to be dealt with by me as the patient. Why? Well because I can’t do without the medications and if I didn't do this then I would have been left cold turkey being continually sick. How can that be right? Isn't it hard enough simply being a patient let alone having to manage the NHS system that goes with ensuring I get the right medications on time?

I go on that I am an i-patient, completely interactive but what if you are not and what if you do not know the system?

I recently attended an NHS Entrepreneurs event. At that event we were told that the NHS will go bust by 2020 without changes. The room was full of SMEs although what was interesting was that I was the only patient in the room. All the talk was about using new technologies, about remote access, about self-managing and about using the data that exists to make the service more efficient. What no one actually did was ask the patient what they wanted and how life could be improved for them. My story above is an example of what is wrong with the system. No one knows the rules of play. My problem could have been sorted very easily by:
(a) Everyone knowing who funded what and when.
(b) By speaking to each other and not having to get the patient to do all the running around.

Any idiot can work out a solution for that.

So that brings you up to date with my patient journey this last week or so. On the physical health front it has been a bit of a challenge but we are dealing with things. I am expecting to meet the Professor at UCLH about my pacemaker in the next couple of weeks. I am also seeing the doctor about my bile salt malabsorption this week as the medications haven’t worked. If anything the symptoms are slightly worse.

However I do not wish to end this post on a negative point. This post is actually dedicated to the amazing riders and crew of the 2013 Guts In Motion charity bike ride for Crohn’s and Colitis. This year’s event has so far raised over £70,000 bringing our 4 year total to around £330,000. If you fancy a read of how the event finished then please check out this blog post. I had the privilege to be the founder of this ride and this year was the first time I was well enough to take part as a crew member. It was one of the most humbling experiences I have ever had and these few words of thanks do not convey my gratitude adequately. Being a patient isn’t easy but moments like these light up my world.

Till next time
07-25-2013, 08:19 AM   #2
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hey Michael,

Thanks for the update and WOW! Kudos to you and all those that participated in the charity ride! What an absolutely brilliant effort.

Okay, so I followed the timeline but what is the deal with the costings? Is the difference between being an inpatient and community based or the different health areas you have there? Can't think what you call them...boards??

Dusty. xxx
Mum of 2 kids with Crohn's.

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