"Cyclical Vomiting Syndrome / Gastroparesis"

About: Queen's Medical Centre / Accident and emergency

(as the patient),

Dear Sirs,

I am unfortunate enough of have suffered from Cyclical Vomiting / Gastroparesis for the last ten years which causes me,   over a number of weeks or months, to build up to an attack of the most painful, debilitating and distressing vomiting accompanied with an all encompassing feeling of the most intense nausea imaginable which I feel through my whole body and renders me barely able to speak or remain coherent.

It took some 6 years to diagnose this illness and finally, over the next couple of years and after trying every kind of treatment, (and discovering I had Bowel Cancer along the way), a Treatment Plan was arrived at consisting of intravenous morphine injections and replacement of fluids.

It was agreed with my consultant that when an attack was under way I should call for an ambulance via 999 and that morphine could be administered immediately on site or en route and repeated as necessary in A&E.

Unfortunately this plan is so far removed from what actually happens when I am at my most vulnerable, in the height of one of these attacks.   The very second that the word morphine is mentioned I am almost invariably treated like I am a drug addict looking for a free fix.   I have experienced this from both the ambulance crews and the hospital staff.

The problem became so bad that my GP agreed to write an open letter to all concerned explaining my condition,   the treatment required and the need for expediency.

This letter has helped on occasion and every time I have been admitted I have handed a copy of the letter to the attending staff in A&E who say they will put it on file.   This seems to have never happened as unfortunately the most recent time I required treatment I failed to take a copy with me.   Fortunately I am now known to many of the ambulance crews and am usually treated with respect, compassion and professionalism.   However on the last occasion, despite his best attempts, the paramedic was unable to get a cannula in on the ambulance - I have notoriously deep buried veins.   Despite my pain and distress I reassured the ambulance man that I would be ok until I arrived at A&E.

On arrival at A&E I was stretchered into a cubical and left there, unattended and untreated for a good two hours before the pain and nausea became so overwhelming that I began to scream in pain.   I had now been ill for seven hours. To scream in pain,   knowing the whole of A&E could hear me is the most degrading experience imaginable.    I ended up screaming for almost an hour before a doctor came.   During this time I was accused of being aggressive and selfish when I suggested they were treating me like an animal, and one male nurse took it upon himself to tell me that the treatment was free to the user so what was I moaning at!   The truth is, I was treated worse than an animal as an animal would have been put out of it's misery long before it was left in such distress for three hours or more.   If I had been treated promptly,   my pain and nausea would've  been stopped immediately and with one or two further injections the whole episode could have been terminated.   Instead,   the episode lasted eight or nine hours and I was so ill I had to stay on a ward overnight and then suffer for days with very painful pulled muscles and absolute fatigue. I cannot overstate how very ill and desperate this condition makes me feel.   I do not expect to have to spend what little energy I have left trying to convince medical personnel that I have a legitimate need for morphine and am not a drug fiend, but this is invariably what happens and is typical of most of the visits I have encountered at Queens' A&E.

This is just the latest horror story in a long line,   believe me I could go on and on,   but seriously,   enough is enough.   This poor standard of care really must not be allowed to carry on.   I feel so desperately let down by the Queens Medical Centre and it has now come to the point that I am so frightened at the thought of how poorly I will be treated that rather than daring to call 999 I have begun to consider taking my own life - it really is that appalling.

The main problem would appear to be with my notes.   The fact that it seems to take hours to locate them and when they do arrive the treatment plan is not prominently displayed where it can easily be seen but buried deep within the file if there at all.   Moreover,   the "Recent Correspondence" section on my file is populated with documents five or six years old which pre-date the current treatment plan and are not relevant or helpful.   The above mentioned letter from my GP, despite being handed in every time I have visited the hospital since it was written is also nowhere to be seen.

The second problem is with the staff - doctors and nurses - who are far too easily prepared to categorise me as a junky rather than recognise that I am a very ill person with a serious illness who desperately wants to be relieved from pain and distress.

I have plenty of constructive criticism to offer and can assure you that I am  a very reasonable person,   who does not expect the earth but does expect to be treated with respect and compassion,   both of which have been sadly lacking in my extensive experience.

I hope and trust that I will receive a prompt reply and that action will be taken before I become ill again.

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Response from Nottingham University Hospitals Trust

Thank you for raising your concerns. I am so sorry to read of your poor experience at our Emergency Department recently. Your story has been shared with the Clinical Leads in Acute Medicine (who are responsible for the Emergency Department). Where there are lessons to be learnt, we will ensure action is taken.

As the Clinical Lead for Acute Medicine at Nottingham University Hospitals NHS Trust, which includes Queen’s Medical Centre, I would welcome the chance to restore your confidence in our hospital. If this is acceptable to you, please can I kindly ask you to contact me either via email on: jim.murray@nuh.nhs.uk or call me on 0115 9249924 ext 67662 so we can talk through the best time to do this.

I do hope you are feeling better and that we can meet soon.

Best wishes

Jim Murray

Clinical Lead, Acute Medicine

Update posted by Jay2013 (the patient)

Dear Jim,

It has been just over a year since I have been ill enough to need to come in to the Emergency Department and almost a year since we last corresponded.

I am very happy to report, as promised, that my recent experiences were almost the complete polar opposite when compared to previous encounters. The whole episode could not have been carried out with more efficacy and professionalism.

Your efforts to have my notes and treatment plan flagged up appear to have paid off. Moreover the whole department appeared more organised and the staff were very friendly and attentive and I felt looked after at all times.

I had cause to come in on two occasions in January before the condition was completely stabilised and on each occasion I was in and out of A&E and discharged within three hours of calling for an ambulance.

I can hardly describe what a difference this has made to my outlook on life and I would like to sincerely thank everyone involved - from yourself to the team on the ward - for helping to resolve this problem. I am truly grateful. It is so reassuring to know that I can now receive the treatment I need so quickly and efficiently.

Once again, many thanks to everybody concerned.

Kindest regards