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Crohn's Disease Forum » Treatment » Difficulties in getting proper treatment


12-21-2016, 04:44 PM   #1
babyjenks
 
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Difficulties in getting proper treatment

Hi,
I don't know what to do and I hope you can help me somehow. I moved to the United Kingdom 2 years ago and I was referred to Charing Cross Hospital in London. I was in remission back then, using Humira. I did a colonoscopy, an IMR and other diagnostic exams, all were okay, but since September I am not well (blood, terrible anal pain). I managed to see the gastroenterologist in October and he told me it's just a fissure and it's not Crohn's related, even if my CPR values are high and it doesn't seem to heal. He prescribed me some kind of ointment but it is not working and even more he wants me to cut off the Humira (he has always wanted that, so I obtained it from Italy ever since).
I prayed my GP to refer me to another hospital but he said the gastroenterologist should do it. The hospital, however, says the GP should, so here I am, feeling a bit abandoned and untreated.
I am sorry to complain, but I don't know what to do.
Please, do you know how can I change gastroenterologist?
12-21-2016, 05:09 PM   #2
ronroush7
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I am sorry for what you are going through. I am going to tag Fuzzy Butterfly
12-21-2016, 05:12 PM   #3
Sophabulous
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Oh no, that sounds awful! I agree, he should be taking this more seriously!

I've never personally done it before but I know a friend of mine has kidney problems and won't go to our nearest hospital after having an issue there. I'm sure she just asked her GP who referred her to another one? This might vary between NHS trusts across the country though.

I would maybe book an appointment with your GP, and also put it down in writing why you want to be transferred and the impact this is having on you.

Taking the time to formalise things in writing to me shows that you are serious and have thought it through carefully. In any case they shouldn't be letting you suffer on like this. Good luck!


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12-21-2016, 05:15 PM   #4
Sophabulous
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I understand your predicament though, I've often been to see a GP when things are rough and they just want you to speak to the gastro team and not get involved themselves. I presume they don't want to be accused of interfering/making things worse or aren't confident enough in the specialism. If it's a case of transferring you though it's not like they are prescribing anything, just putting you in the care of a different specialist.


12-21-2016, 05:18 PM   #5
babyjenks
 
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Thank you for the support, guys.
I took millions of appointment with my GP trying to get another referral. They always answer that it's the hospital that should do it, but they say it's the GP, so I don't know what to do. I will try to book another appointment and I will put it in writing.
I really can't manage anymore with the gastroenterologist from Charing Cross. He wanted to cut off my Humira since the first days, even if my Italian doctors have written a letter to him asking him not to since I have a series of risk factors (young age, aggressive disease, multiple surgeries, rectal localization). He proposed I should go on with no meds at all.
He is extremely difficult to reach (6 months appointments!) and I am feeling sad tonight. Sorry.
12-21-2016, 05:20 PM   #6
babyjenks
 
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I understand your predicament though, I've often been to see a GP when things are rough and they just want you to speak to the gastro team and not get involved themselves. I presume they don't want to be accused of interfering/making things worse or aren't confident enough in the specialism. If it's a case of transferring you though it's not like they are prescribing anything, just putting you in the care of a different specialist.
My first GP was lovely. It's six months he retired, unfortunately for me, leaving his practice to a not very emphatic doctor. Sigh.
12-21-2016, 05:22 PM   #7
Sophabulous
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Don't apologise, I'm not sure how you could not be down in the dumps! I hope they take you seriously this time, otherwise all I can think is to maybe complain to the hospitals chief executive directly about this?


12-21-2016, 05:28 PM   #8
babyjenks
 
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I didn't think about this. It seems a bit extreme but I will indeed try if I do not succeed in the next months. My next appointment with the gastro is the 20th of January and I doubt I will manage to get referred to another hospital before, so I will go and try to be taken more seriously.
12-21-2016, 05:44 PM   #9
Sophabulous
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I didn't think about this. It seems a bit extreme but I will indeed try if I do not succeed in the next months. My next appointment with the gastro is the 20th of January and I doubt I will manage to get referred to another hospital before, so I will go and try to be taken more seriously.


I think that might give your dissatisfaction some 'clout.' You are being treated like a prisoner or this Gastro doctors experiment and that isn't fair when you are the one living with it and suffering.

Maybe write to the chief executive now and hopefully you might hear back before your appointment if you're certain your GP won't help you. Definitely send it recorded delivery with a signature too! Best of luck, I hope they sort this out for you sooner rather than later


12-21-2016, 08:30 PM   #10
Jabee
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I cannot remember from my student days in Britain whether or not it is possible to switch GPs. Can you find a GP who is more empathetic and caring? I have had several GPs,never switching, just having doctors leave the practice. It's always an adjustment when you start seeing a new one, and my current GP and I don't work very well together, so I am thinking about looking for a new one. When you have a chronic illness it's even more important to have a GP who can take care of you; I've had specialists (not my GI, though) who began prescribing medication and after a couple of visits discharged me back to my GP saying that she could take charge of whatever I was taking. My GP, however, would prefer not to deal with anything except "ordinary ailments". It's quite frustrating.
12-27-2016, 12:49 PM   #11
eleanor_rigby
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No, no no this is completely unacceptable and illegal. BOTH the hospital and the GP could refer you.

I have very recently moved from Nottingham to Cheshire and I have been told the easiest thing would be for my consultant Gastroenterologist to transfer my care to a new hospital near me. That way all the notes are there and everything is uptodate. However, my new GP told me they can also refer me onwards as well.

Your right to choose where you want to be treated is a LEGAL right in the UK. If you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG: http://www.nhs.uk/Service-Search/Cli...cationSearch/1

For info: http://www.nhs.uk/NHSEngland/AboutNH...lsSummary.aspx
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Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
12-28-2016, 06:56 AM   #12
ncman
 
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I can only echo what Eleanor Rigby has said above, I was going to provide the same links.

However, from my experience, as I travel 100+ miles to see my GI, I do get a lot of odd comments from the junior doctors who sometimes review patients on his behalf who made me feel really quite stupid for travelling such a long way.

Even my GP is like 'Why are you being seen over there...' so even though there is a ''choice'' in the NHS, in my experience, the attitude is generally quite hostile towards to the fact you're not local, and they're unwilling to accommodate healthcare over two different trust regions.

Anyway, I digress, it is YOUR choice to be seen by who you want to.
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Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
12-28-2016, 04:13 PM   #13
Sophabulous
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Please let us know how it goes, I'm glad others with a greater knowledge of the law stepped in! Good luck


12-28-2016, 04:19 PM   #14
Sophabulous
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I have very recently moved from Nottingham to Cheshire and I have been told the easiest thing would be for my consultant Gastroenterologist to transfer my care to a new hospital near me. That way all the notes are there and everything is uptodate. However, my new GP told me they can also refer me onwards as well.


Good to know myself and welcome to Cheshire! Which area are you in? Im under Cheshire East


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