Any advice regarding dealing with the nhs - LUPUS UK


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Any advice regarding dealing with the nhs

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I have just joined the group and as wondering whether anyone could offer some advice or help.

I was diagnosed with lupus about 3 years ago and put on hydroxy chloroquine. My main symptoms at the time were fatigue and some muscle and joint pain. Following my initial rheumatology appointments I was told I would have 6 monthly check ups. Last year I had to chase this up after waiting 9 months. I have now not had a rheumatology appointment since last September. I had one booked for August but this has been rescheduled to October. I am having an increase in symptoms. I have developed a rash in the sun for the first time but more problematic is the severe hip pain. I have been to my GPS and they sent me for physio, after a few visits the physio referred me back to rheumatology. He made a separate referral as he wasn't sure it was lupus related. That referral was cancelled by the hospital as I am already seeing rheumatology. My GP won't help as he says I need to see my consultant but I as I said above that appointment is long overdue and been postponed. Has anyone experienced anything similar and if so any ideas what I should try to get this resolved? I am in constant pain, can't sleep and am really struggling with what to do. Thank you

14 Replies

Hi. I have a similar situation at my local hospital. My 6 week appt took 9 months to arrive and appointments are scarce to the point of being non-existent. When my symptoms were worsening and I had a disinterested GP, I badgered my rheumatology nurse by email at regular intervals and was offered review appointments. I now have a superb GP who will do my grumbling for me if she feels I am being neglected by the hospital and appointments tend to follow her letters/faxes. Your GP should be fighting your corner for you and getting you the attention that you need. I have learnt that it doesn't pay to sit quietly and wait for the system to work - often it needs a good nudge.

I hope you get sorted soon, don't be afraid to shout for attention. Best wishes. Clare

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I feel your frustration. I was told I would be given a three month review about five months ago. The only thing is, I was seen quite quickly when I became quite ill in January. I think the trick would be not to become so sick before you are seen! I find it very disheartening. Has your department got a helpline or could you contact your consultant's Secretary? Hope you get sorted soon.

Unfortunately it seems that a lack of rheumys in some hospitals means appointments get pushed back due to an increase in the number of referrals. It's not uncommon, but it's also not on. I was diagnosed over 20 years ago & every now & then I have to chase up my appointments & prod them with a stick to get one (eventhough I have always seen my rheumy every 3 to 6 months depending on how things are). If you phone the rheumy's secretary or the rheumy department, ask if there is a rheumatology nurse you can speak to or if they can pass a message on. Secondly, it's all fair & well for your GP to say "Wait till you see your Consultant" but you must tell him that your appointments are being pushed back & that you are concerned with what's going on, that you're finding things overwhelming & also want some pain relief to help (if that's the case). If he still insists you wait to see your rheumy, speak to another GP, they are supposed to be your first port of call & should be willing to help. In my opinion it sounds like your GP is a bit pants :/ In regards to all the symptoms you've mentioned (muscle pain, sun-sensitivity etc) it's all common with lupus as well as a few other autoimmune (AI) issues. The hip pain could be linked to the lupus, linked to another AI or indeed, nothing to do with the lupus (unfortunately, if you have a chronic illness 9 times out of 10 everything gets blamed on that anyway but please remember it's not ALWAYS the case). Wishing you luck & hopefully some answers soon :)

I rang the helpline at the rheumatology department ...... I had to leave a voicemail I'll explaining I was feeling worse and that rest/painkillers weren't helping. I had a call back which I was unable to answer due to work in which they simply advised rest and painkillers!! I am sorry to hear others are experiencing similarly upsetting and frustrating situations but have to say it is nice that there are people who understand.

Just a thought, I was taking Naproxen for hip and back pain relief. It worked amazingly well - unfortunately really noticed the difference when I had to stop taking it. (Diagnosed ALS too, and can't take that med with warfarin). Perhaps you could ask your GP about prescribing it?

You've got some vvv good replies, with which I totally agree: we are stuck having to be very determined in the way we chase these clinic appts. This is really tough when we're feeling poorly. Otherwise I can only offer you a summary of the way in which my treatment plan has developed to date. in order for my treatment to evolve in the way I'm about to describe, I had to be v proactive and chase appts...and I'm glad I did, because it's all been worth the hassle...

My diagnosis with SLE began at a top UK NHS lupus clinic 4 years ago in my late 50s (turned out mine is actually infant onset lupus, but that's another story). I was started on daily hydroxy 400mg, which did help a bit. Meanwhile, I was being seen every 3-6 months by rheumatology at the lupus clinic. After 2 or so years on hydroxy, my Drs & I acknowledged that my level of multisystem symptomology required more meds, so rheumatology let me try adding low dose prednisolone tapers during relatively debilitating flares (10mg pred tapering down to 0 over 4 weeks). These tapers efficiently damped down all the lupus symptoms daily hydroxy hadn't been able to reach on its own. so, in my 4th year after SLE diagnosis, rheumatology decided to try me on mycophenolate as a steroid sparing treatment. A relatively low therapeutic dose of 1000mg myco cellcept daily now helps me the same way pred had, but with less side effects.

My impression is that many other lupus patients experience a similar evolution of their treatment plans during the early years of the diagnostic process while the character of our individual version of lupus is being gradually understood. So, unfortunately, the frustrating & time/energy consuming process of chasing up clinic appts is vital to progressive improvements in diagnosis & treatment: cause the NHS is under pressure, and clinic appts are hard to come by. It's a dreadful situation. Patients with do-called "mild" lupus are stuck between a rock & a hard place...we know that the most severe cases need to be priorities, but we need to make sure we get due care & attention too...

Hope you'll let us know how you get on...wishing you all the best🍀🌻

Try calling the Rheumotologit's secretary-explain you're in acute pain and would be grateful for any cancellation slots (assuming you can make it to an appointment at short notice?) When I've had a flare I've managed to get an appointment this way either on the same day or next day as people often cancel last minute. I hope you get sorted very soon. Call daily if necessary!

Just a thought has your doctor sent you for X-rays - your hip pain could be total unrelated ?!

Wow! All very good advice given. Many of which I will definitely be trying myself because I've been battling for what seems like a long time to be seen. However, I trust you will pursue suggestions given and get the most needed diagnoses needed to go forward. Keep us informed

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I am astounded at your GPs reaction, he has a duty of care to you and should be liaising with your rheumatologist, especially as you are on a drug that needs monitoring. Are you having regular eye tests? this is essential when you are taking hydroxychloroquine. Are you on Plaquenil or its replacement, because some of the generics can cause the symptoms you are getting. e.g. Quinoric.

Continued pain is a sign of a flare as well , so your doctor should be aware of that.

Check on the LUPUS UK site for help. Also there is a lupus nurse who you can email at St Thomas's hospital with questions she has helped me with problems several times.

I am now awaiting calls from the rheumatology helpline and patient liason services. I do not have a number for my consultants secretary. Tomorrow I shall try the GP again! I have been sent for an x-ray of hips courtesy of the physio but results taking 8 weeks. I am trying to keep pushing but just feel no one wants to accept any responsibilty and just tell me I need to speak to someone else. Nothing for it but to keep trying I guess! I really appreciate people taking the time to comment and offer advice and their own experiences. Fingers crossed something gives soon!

Hi, I appreciate you don't have the consultant's secretary's number but have you called the hospital switchboard and asked to be put through to Her/him? / or searched the details via the hospital website? I'm lucky to have a very good consultant with a helpful secretary that tries to accommodate - I'm hoping the same for you. You may have already tried this so apologies if this isn't helpful advice. I hope you get the help you need very soon

Hi I'm new , I empathise , same here and usually by the time you see the specialist your feeling a lot better , the NHS is very slow , I live rurally and appointments are like gold dust , I don't think they've hit any targets for any urgent treatment I've needed and pain relief is just non existent. When I've needed antibiotics they are reluctant for good reasons but then I end up in agony and in a far worse situation. A Gp several years ago labelled me as neurotic and anxious , once labelled you can't shake it off , I was actually severely unwell and ended up hospitalised , so I changed Gp , new Gp discovered a mass in my chest ,enlarged thymus and a that the other Gp had not informed me of a low white cell count etc etc and that my symptoms were not anxiety . I would askto see your notes and push for help , I'm living with pain at the moment , mostly neurological and one of the gps in my practice blocked my rheumatologist from sending me to the neurologist , so I've been languishing on different medicines ,all causing nasty sideffects and no one getting to the root cause . I have been told I have lupus ,then a Gp discounted the diagnosis and ignored the specialists advice , it's all so frustrating. To add to it when you are trying to hold down a job and your boss wants to know why you are sick . I hope you get sorted , look at your notes , be firm and be persistent. X

Hi. It’s a pain when the hospitals cancel app. Have you tried ringing the secretary! And do they a nice see who takes phone calls from patients and give advice if you go on there websites for the hospital and bring up Rhuematology it will say but the I do believe the secretary should be able to help x

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