LUPUS UK
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I'm overdue a Rheumatology appointment - what should I do?

Hey, I last saw my specialist mid April and he said they'd see me in 4 months time but I'm yet to receive an appointment letter in the post. (It's now been 5 months) I was only diagnosed in January so it's all quite new to me.

I'm still suffering quite badly and I still have symptoms that I have yet to be able to discuss and new symptoms too so I am quite keen to get this all sorted. Is it okay for my to call my hospital and prompt them regarding my next appointment or will this be useless? Or should I see my GP for this? I feel pretty left in the lurch to be honest.

I've never had to use the NHS much in my adult life and I have no idea what is acceptable in this kind of situation. Thanks.

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Hello eescvc,

People often miss follow-up and review appointments because there are so many links in the chain. I have nearly missed several, with various specialities, because I thought they would be contacting me, only to discover that they were waiting for me to contact them and others because an appointments clerk has given me a different date to the one that subsequently arrived in the post.

Definitely do ring the Rheumatology Department directly and explain the situation. Don't be afraid to say that you are struggling and need some specialist advice at the earliest opportunity. Beware being put through to the Health Board's generic 'Booking Centre' or 'Out-Patients Appointments Desk' - go for the Rheumatology Dept directly. You might be able to sneak into a cancellation, but also should be able to ask a question or two over the phone. My rheumy nurses will answer questions and pass on questions/answers/info to the consultant sometimes. Remember it's the squeaky wheel that gets oiled! x

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I agree , i have phoned my consultants secretary in the past and it has never been a problem they have been very helpful and got back to me with the information. Good luck x

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Me too! This approach has worked for me several times over the years. Thanks to whisperit, now i remind myself to think “squeaky wheel”. hope you’ll let us know how you get on XOXO

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Depends on how helpful your GP is, but if this were me that's the first place I'd go. They can speed things up if they think it's needed.

That said, it won't do any harm to contact the hospital and just remind them you haven't heard anything. Last year my rheumatology appointment was repeatedly cancelled and a 4-month follow-up turned into 11 months. After the fourth cancellation I contacted them to politely ask them to stop messing me around and, miraculously, an appointment became available the following week!

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I would phone your hospital reception. All the best

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Great replies from seasoned pros there 😘😘😘...Your Rheumy's secretary will understand you were told 4 months for a specific reason...perhaps his/her direct line is on letters from your Rheumy, as some switchboards are reluctant to give the number out?

Keeping posting and be informed! It's a jungle out there 🦍🐅🐍🐒 🐦but there's so much support to be had from this forum! Be well xxx

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Sadly seeing your rheumatology consultant is always a bit hit and miss.

If you have a rheumy nurse, try getting in touch with her-they are very knowledgeable and are able to readjust your drugs and I found they were generally most helpful when you are first diagnosed & still struggling.

A gentle prod to the appointments office wouldn't go amiss......if you keep quiet you will quite likely be forgotten

Hope you get some help soon.

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Hi eescvc, as if you don’t have enough to worry about without having to chase Drs.

I agree with the comments below, you do have to chase them up & I mean it may take several calls initially. Explain how urgent this us to you & that is just adding more stress to a very stressed immune system.

Ring the Rhematogy Dept direct in the hospital or clinic & stress the urgency of it.

Eventually you will personally get to know the Nurses & receptionists and when this happens they usually go out of their way to help get you an appointment in a timely manner. There is no point going through the GP as they would have already written the referral, mention it to them when you see them to see if they have any other ideas about how to get your appointments quickly.

I think you will need more than a gentle prod when you call just nicely say this appointment has to happen ASAP as your condition is getting worse over time, make them see the urgency of your needs. Even have a list of things that have exacerbated since you saw your Rheumo & tell them the stree of no appointment is adding to those stress levels. If you don’t get someone nice on phone ask for their name & position & mention both your GP & Rheumo will be most upset that your condition is deteriorating due to no further appointment with your Rhemo yet.

Never be afraid to ask for a bit mor time in the appointment if the Rheumo is rushing you & not explaining things properly. When you are newly diagnosed You normally have a lot more questions, I used to write mine down & take it with me in case I forgot something important to that you need to know.

You may need to do your homework & find out who are the Rheumos who have a special interest in lupus as they all have their favourite diseases to work with eg osteporosis, osteoporosis arthritis etc so you need to find out the one you are most comfortable with that has good communication skills & a passion for helping people with Lupus.

I live in Australia and don’t know your health care system so you may have to adjust some of my suggestions.

Good luck eescv let us know how you get on

Melbourne Girl 🍀🍀🍀🍀

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Hi eescvc,

Sorry you’re not feeling so good. It is an already anxious time being newly diagnosed & I remember anxiously awaiting every appointment in the first year to hear news of investigations & treatment. The NHS is so overstretched it sadly is very common for substantial delays in reviews. My last eight week appointment took nine months to come around!! Our hospital is understaffed and currently facilitating evening clinics to try to reduce waiting times.

If I am unwell or have concerns between appointments I have a Rheumatology nurse helpline to contact. I leave a message & they try to get back within 2 or 3 days. Also they discuss symptoms with my Consultant. If you don’t have access to this service definitely contact the Rheumatologist Consultant secretary directly to describe ongoing symptoms & concerns.

In the early days every piece of information & advice is crucial to self manage between appointments. I used Lupus UK website a lot educating myself about symptom management with pain & fatigue. Also how to prepare for your next appointment. You will also get great support on HealthUnlocked with first hand advice.

If you are still unhappy contact PALS to raise a concern re waiting times.

One skill I have had to master is patience which I’m still not good at. I remember waiting for news at each next appointment only to be disappointed that very little changed & I wish I had taken control personally sooner. Response to treatment takes time & I was very impatient.

I hope this helps. Let us know how you get on

Take care

Kerrclan x

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Hi

Phone appointments, if they can't fit you in quickly ask to speak to the Consultant's Secretary. Explain what you had been told by the Consultant and that hour not feeling too well and that your very unsure of various symptoms.

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I was diagnosed last year and was all a bit new to me too, but take the advice already given

I call the rhemy’s secretary there number should be on any letters you have or definitely speak to the rhemy nurse

Never hurts to call up I used to feel I was being a right pain but sometimes it’s the only way especially at this early stage when they are trying to get you on an even keel

Good luck 👍🏼

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