At about 9 a.m. on Tuesday last week (19th April) I was peacefully washing the breakfast dishes, when I was suddenly struck with an appalling pain on the left side of my abdomen just above the hip. In the next hour I vomited 3 times and the pain just got worse. I rang 111 who called an ambulance for me. It arrived within 10 minutes and the crew were exemplary, both fully professional and very kind, as was every member of staff I encountered over the next few days from the cleaners to the consultants. I was taken to my local hospital, the Whittington, where a CT scan revealed bleeding round my kidney. I was transferred to the Royal Free as they have a Urology Department. They found that a benign tumour on my kidney was bleeding quite badly. They recommended blocking the artery responsible to prevent it happening again as this would be less damaging than actually removing the tumour, so I agreed and had the procedure, awake throughout. I had a few days in hospital being monitored every hour, then a couple of days with my daughter. I'm now at home recovering.
All brilliant, but my opinion of the Royal Free is mixed, because yesterday I had a letter from the Rheumatology Department cancelling my appointment for 18th May. I had already had my last appointment in December cancelled. They are now offering me an appointment in April 2023! Actually I was pleased that my medical emergency didn't cause any kind of flare in my GCA or PMR, and I'd be happy just to tick over on a very low dose of pred, but I do need advice about Methotrexate. I have taken the decision to reduce from the prescribed 15 mg per week to 10 mg, but don't feel confident enough to take it further. My GP won't advise as it was prescribed by the hospital. After my December appointment was cancelled, I was going to write to my consultant, but never got round to it. This time I really must ask her if I'm okay to discontinue MTX. I want my treatment to be released to the GP as well, or to another hospital, but I've a feeling they're all in a similar state. I went to the Royal Free rather than the Whittington in the first place because their next available appointment was a lot sooner.
So, my experience seems to indicate yet again that the NHS is definitely world-class when you're an emergency, but less so once you're past the worst...
Written by
Marijo1951
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I do get the impression that the Royal Free is struggling rather,
But I wouldn't let that rest - I would demand an appointment since THEY have cancelled twice and a year more not being monitored for GCA when you are on MTX isn't acceptable. If they can't do it, you must be helped to find someone who can.
Thanks for your encouragement. I know I'm recovering quite well from GCA and PMR, but still feel I've been treated a bit shabbily. I'm psyching myself up to tackle them and I'll let you know what happens. By the way should I start by writing to the consultant or approach PALS?
I'll have to start the campaign next week as I managed to pick up a bug somewhere along the line (a bad cold with gastric symptoms and definitely not covid), so I'm dealing with that as well as recovering from the kidney emergency!
It isn't over until the fat lady sings - and the same applies in GCA, not gone until it is gone.
Depends how kind you are feeling I suppose - PALS seem to be quite good for some things but they have no teeth when push comes to shove. Copy them both in to your missive? Include the CEO "for information" perhaps?
I do appreciate the problems that Covid introduced. I do understand it isn't the NHS's fault that Brexit sent a lot of people home. But those of us who didn't make a noise have been very neglected for 2 years - and it is beginning to look a bit as if "they've been fine so we'll keep up the remote care and play it for all it's worth". I've seen my rheumy at least 5 times since Christmas - and he is the Regional Head of Rheumatology. I hadn't seen him for about a year - but I knew how to get help if I needed it and my GP is rheumatology trained too. You on the other hand are being expected to have gone nearly 2 years without contact - not good enough.
Hello, Marijo. I posted in a similar vein recently and I'm not in any way as poorly or in as much need as you. I have written to my rheumatology dept and on the good advice here will send a copy to my GP to inform her of what has happened and to the CEO of the hospital if I don't receive a satisfactory reply soon.When you feel better you'll be in the right mindset to do something about your concerns.
My letter was posted yesterday and I had the best night's sleep I've had in nearly three weeks! 🙂
PS. I used to live near the Whittington many years ago. As children we were enthralled by Dick Whittington's stone.
Hi I too am under Royal Free for firstly GCA now PMR I presume under Dr Stratton I too find them a bit cavalier with appointments but you can ring rheumatology dirrect and ask them to call you if any problems.i am also under gastro there as have ulcerated colitis and pancreas clinic as have cysts on the whole have been well treated.Hope you manage to get earlier app. Lately I have been adjusting meds myself !
My consultant is Dr Mangat. Yes, I know about Keith the rheumatology ''gopher'' and the nurses' number. Keith has twice given me an appointment which has subsequently been cancelled, including the one last December. I really need advice about MTX and want a face to face appointment with Dr Mangat or one of her team. Yes, I adjust my meds too, so far without disaster. I do find there's generally a welcoming atmosphere in the hospital and I've never encountered anybody who was unpleasant.
I have been under the Royal Free Dept of Immunology for treatment of my Primary Immune Deficiency (low IgG) for the past 6 years and have nothing but praise for them, a truly excellent bunch of dedicated professionals. I have 6 monthly clinic appointments which have been by phone or video for the past couple of years. I send them blood for testing every 3 months.
I wasn't criticising their ability and knowledge - but their staffing problems which are common to most of the NHS I fear. And compounded by being in London ...
Well, I can certainly add my praise for the Urology and Radiology teams after my recent experience. And the Rheumatology Department also took first class care of me when I was first diagnosed with GCA and PMR.
I've seen the good and not so good too at our local hospital. My husband has had really good care since his cancer diagnosis earlier in the year. The rheumatology dept however seems to be in chaos. Since being referred in autumn 2020 I've had one nhs appt last year and only got that because there had been a cancellation. 2 appts cancelled so nothing since last July. Was left to taper 1mg a month which if I had followed would have ended up back to square one . So I've had to do my own thing with the advice from this forum. Just hope I can still keep getting the pred on my repeat prescriptions. The NHS is excellent in some areas but in chaos in others.
It was strange after feeling so grateful for the first class treatment I received after my kidney crisis to go back to feeling so frustrated when I got the Rheumatology letter - and from the same hospital too. In fact I was just about to write an email thanking the hospital when the letter arrived.
Another bit of madness is that I used to receive a regular letter reminding me to make an appointment for a blood test. The last couple of times I've had to ring the hospital to remind them to ''put me on the system'' after my GP has told me to have a blood test before my next prescription for Methotrexate.
I do worry for the people who are less articulate or literate or more intimidated by the system (or lack of one!) I'm sure many just drop out of health care.
Yes I worry too. I'm sure there's many, which is such a shame and shouldn't happen. I know there's many in the NHS who work incredibly hard. I did myself years ago but some areas need a complete re organisation. I know covid hasn't helped but I think some areas were already struggling before that.
I was diagnosed in July 2017 and had first class treatment for the first couple of years. I got a hint of difficulties the first time I had an appointment delayed by a couple of months, which was definitely before covid. I was told by the admin person, who was clearly fed up with listening to complaints, that rheumatology was ''no longer considered a priority''.
I didn't think about that aspect of it. The consultant told that he was struggling to get more funding for his dept though and was hoping to get more staff.
Well, they were supposed to replace as many as possible face to face appointments with video or phone appointments. All well and good except that I was offered a telephone appointment last June but nobody called me! I emailed PALS and got a call from my consultant next day. That was the last contact I had with the Rheumatology Department.
You could write to the CEO saying what excellent care you received from Urology but Rheumatology......... They appreciate letters of thanks, but yours would have a sting in the tail! Get well soon.
I think that's an excellent idea. I'm letting all the suggestions marinate in my brain before I decide exactly which way to go after the bank holiday. At the moment, recovering from the kidney procedure plus the gastric flu-style bug, I'm not up to doing much. I discovered a silver lining this morning - I've lost 8 lbs in 2 weeks. However I don't think this is a recommended method of losing weight!
I'm at the opposite end of the Rheumatology chaos I think. I've had five appointments in the space of a year, 2 with Rheumy, 2 with Nurse and 1 with both of them! I honestly think they were all a waste of their time and mine.
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I was feeling so good. Then... WHAM!
Taper down to 5mg. Not feeling so good. 
In good hands - new Rheumatologist!
How best to manage my PMR symptoms?
