Poor nhs care

Posted , 8 users are following.

My partner has had Crohn's Disease for 3 years now (5 years but 2 years to diagnose).

I can honestly say that one of the worst parts about his disease is the poor out-treatment care he receives.

He has an ibd nurse who he is told to contact when he thinks he's having a flare up. However it often takes 2 weeks of continuous phoning and emails (I'm talking a LOT of emails and voicemails) before she actually bothers to reply. When she does, her tone is like he is making it up with sentences like

'Could just be a bug. Please go to GP' even though he has always accurately predicted when he's having a flare up in the past and is the least likely to over exaggerate symptoms.

He is only able to see the consultant twice a year and this never coincides with a flare up.

He has currently been off work and extremely ill for two weeks now. Yesterday was the first time the ibd nurse got in contact and there's no talk of the prednisolone he is usually prescribed (usually after a long battle of persuasion).

We have written an official complaint to the NHS Trust his hospital falls under the last time he had a flare up but this didn't get us anywhere.

What I want to know is whether you think this is pretty normal and I just have too high standards of the concept of 'care' or whether this does sound unusual.

We both work in public sector and know exactly what it feels like to be overstretched but his care just feels utterly neglectful and actually very damaging to his health.



1 like, 10 replies

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10 Replies

  • Posted

    Hi Jess, your husbands care for his crohns sounds terrible!! I see my consultant very often is in having issues, I saw him 2 weeks ago and I see him again at the beginning of June. Have you tried your gp for steroids? My gp is always more than happy to prescribe steroids if I can't see my consultant.

    Hope you husband gets the care he needs and deserves asap!

    Nicole x

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  • Posted

    This is normal jess I have been in the same place 2 years to diagnose and everything I was in Cyprus when I was diagnosed and moved back to the uk when I fell pregnant it has since taken me a year and a half of fighting to get the doctors to agree with the diagnosis ,

    They kept telling me it wasn't ibd and kept saying it was is I have since changed hospitals and now under a new consultant who is much nicer and agrees with Cyprus he has since told me that I also have ibs aswell and my bowel movements are to fast and that's what causes all of my cramping pains it has been a long struggle I have got 2 ibd nurses who I can contact now finally if anything was to happen , I only get to see my consultant every 6 months also .

    I was laid up on my sofa for 3 days and had 3 doctors called our and still got no where with them it's awful , I also have other undeluing conditions like pcos and a thyroid condition my doctors are only treating me for pain as they say it not my crohns causing my problems at the moment I'm currently going to a consultant to hopefully get a diagnosis for what else could be wrong it's suspected that I have endometriosis bur even with all of this and the fact that I have a partial stricture my consultant won't prescribe anything .

    I'm under a pain clinic aswell who say I'm just unlucky and have unexplained pain all we can do is just keep fighting and pushing through I always worry about the stress I cause to my partner and my family but I know I have to stay strong it's not a nice illness and I hope things get better for you soon .

    Kiri hu

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  • Posted

    It sounds awful but sadly normal!!

    However, you might get some support if you go through the national Association for Crohn's and Colitis...... I'm sure they have recently set up a national standard of care practice.

    It's so important to feel that you have the support and understanding of your care providers..... But often this isn't the case.

    I keep my own health file. Agendas for appointments. Outcomes after. Always a history of symptoms and appointments.

    It helps me manage my own care but also gives me a valuable history to present if ever required!!..... It's good for a shocking memory too.

    I wish you both the very best and hope you get the treatment you need..... When you need it!!!

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  • Posted

    Hi Jesse,

    I'd agree with Nic87. If the IBD nurse is of no help why bother with her?

    Your GP must be aware of your husbands condidtion and if it were me, I'd go to him/her as my first port of call. There's no need to wait to see the consultant, your GP can prescribe prednisalone or whatever other medication they feel would be of help.

    Good luck!


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  • Posted

    hi jess, I feel for your husband. His care treatment outside of  hohospitail is terrible. I hve crohns flare up, I know what's it's like. I hope get help. Good luck
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  • Posted

    Thanks so much for all your replies, it's so reassuring to hear that we are not alone.

    His GP sent him straight to A&E. After many hours of waiting, the A&E doctors ran tests, took it very seriously and admitted him for an IV course of steroids.

    So the only people who a) doubted his concerns and b) washed their hands of his care were the ones who are supposed to be the specialists!!! Really unbelievable and all the NHS staff we dealt with today were absolutely shocked that he had been left to get into this state by the Gastro department.

    Thanks guys!!


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  • Posted

    Hi Jess,

    Glad you got somewhere at last. If your husband is still in hospital it might be worth getting them to re refer him to the Gastro Dept in the light of his recent problems. 

    i had a similar situation recently. I'd been waiting since Nov 14 for an 'urgent' operation to deal with a Crohn's stricture in my colon, had got no joy and in March  15 was forced to go to A& E as I was worried that the was a real risk of it perforating. Like you husband I was put on a crash course of IV steroids but whilst I was there the Dr that was deaiing with me arranged for me to be seen by the duty Gastro consultant and a Colorectal surgeon. I was disharged after four days with the promise of a firm date for the operation and just over 6 weeks later I went back in and got it done. After nearly six months of inaction the interventio of A&E seems to have broken the log jam!

    Best wishes 

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  • Posted

    Hi Jess sounds like a postcode Lottery to me which health authority are you under ? If I call my Ibs nurse for my Crohns its 24 hours at the very most for my Crohns which I've had for 20 years not much help to you but I don't think your experience is normal as its a battle to get funding for an Ibs nurse to start with try ringing the specialists secatary and demand an appointment you sound like you have been treated very badly and no one is listening and more advise please post again and I will pick it you Jon
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  • Posted

    Hi Jess

    I have had Crohn's for nearly 50 years now, diagnosed eventually when  I was 21, so I completely understand your worries about the care your partner is getting. With Crohns people have no idea how much you suffer and how much pain you have to go through. I was lucky enough to have the help of an understanding Gastro-entermologist. Have you tried talking to your local IBS & Crohns Disease Group NACC? They tend to be in the best possible position to advise you on what to do. Yes they are fund-raisers, but the people you speak to have either suffered themselves or have a relative who has gone through the things you are coming up against, and can advise you what to do, even if you have to apply to be seen by a Hospital specialising in Crohns. I live in Devon, but went to see a Professor in St Marks in London, which at that time was the leading light. I know a friend's daughter who has to go to five different specialists in five different hospitals, dotted around England. It appears to be how patient you are, as to how you get treated. It all boils down to the quality of life you are receiving, and I can guess how low your partner is. It's an awful complaint and I am so pleased that you are fighting on their behalf to get good treatment.     If I can help you any more, please reply. Sheila

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  • Posted

    He is under the care of Barnet Hospital but i think once this flare up is over we are going to push for a move to St Marks in Harrow. Travel to there is rubbish for us (as it's across London rather than going into central London where transport links are better) but St Marks are the UK's lead hospital for IBD and the IBD nurse has just one some major award for outstanding services. It can't be any worse than Barnet so it's worth a shot right ?!

    In reply to the question about private medical insurance, I've looked into it be because it's a pre-existing medical condition only a few places will take you and it's extortionate. For us financially, it's not an option but you should persue it if you have the money. All the consultants that are private are the same as the NHS hospital consultants, seems like it's the norm to have do a bit of private work on the side (which is why us NHS paupers can never get an appointment!)

    I will look into the local support group, thanks for that suggestion

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