Advice on appointment delays please?

[Helzipop]

Hi all, hope you're well 😊

I was recently diagnosed with Sjogren's Syndrome in February this year. At this appointment I was put on a 4 month trial of hydroxychloroquine 200mg to help with my fatigue. I was also referred to Dermatology to check rashes and somr other skin/hair involvement, and told I'd have a follow up appointment in 4 months' time to assess the medication.

I've definitely seen some small improvements on the medication which I'm very grateful for, but after speaking with the hospital I've been told that my next Rheumatology appointment won't be for at least another 3 months, which would be 7 months after my initial appointment where I was told they'd review my medication after 4. Now, the medication is definitely working to some degree so I guess I'm not in a massive rush to see them, but it seems a bit weird to just send me off with a leaflet and a load of pills for 7 months before checking in? I understand there's a lot of pressure on the NHS and a massive waiting list for everyone, but how are they supposed to know if anything is working without speaking to me? I also assume I'll be able to get more medication, or will the repeat prescription expire before I get to see them?

The hospital also told me that my Dermatology appointment would be approximately 8 months from when they received the referral, which was in April (despite it coming from the same hospital a month earlier), so I'm looking at December for Dermatology and late September for Rheumatology. I'm concerned though that whatever assessment Dermatology make will probably feed into my diagnosis and subsequent medication, but then will I have to wait another 7 months to see Rheumatology for them to review that information?

I expect these kinds of delays are a normal frustration to you all, and I apologise to anyone waiting on appointments that have more severe symptoms. I'm just really new to this and so confused about the process and I'm not sure what else to do. I've considered paying for a private Dermatologist just to ensure that my Rheumatologist has all the information at our next appointment and speeds things up a bit, but I'm concerned about the cost of any tests they may do and even if the NHS would accept the information if it doesn't come from one of their own?

Does this seem normal to you all? Would you all just accept it and wait? Any advice would be really appreciated.

Thanks, Helzipop

[PMRpro]

Well a private doctor WILL be one of their own, almost all work in the NHS as a day job. But the chances of seeing the same one is very small. And any tests your GP can't request are likely to be expensive.

I'd discuss it with your GP - though I gather getting an appointment with them is a bit hit or miss too!

[Suvi8901]

Face to face appointments with a GP are a huge wait these days BUT a telephone consultation may be less of a wait.(Prepare your script!👆).

However skin issues are always going to be difficult by phone alone. Medication issues only are more suited to phone consultations but perhaps many GP practices are still habituated to video phone consultations as they were the only ones available during covid lockdown?

Regards.

[Chris21]

Hi Helzipop, unfortunately this is becoming the ‘norm’ for nhs appointments, they also get pushed back further after doctor strikes etc.

your GP should be able to continue to prescribe the medication for you until you get to see consultants. GP should also do a routine blood test around 3 months after being on hydroxychloroquine. you might have to ask the question to give them a reminder as they too are overloaded. if your illness gets worse then the GP can write to consultant to extradite your appointment which might bring it forward a few months earlier. I also would phone hospital appointments occasionally to see where i am on the waiting list as you could potentially be pushed months further back if more urgent cases come along.

I dont know if you were told or you are already aware, but do get your eyes checked as sometimes hydroxychloroquine can affect eyes.

you could also keep a diary of any new symptoms that occur while waiting to see consultant as when you finally see them you'll have forgotten it occurred! Hope you manage to stay well. 😊x

[Poshcards]

my last rheumy appt was a telephone emergency one, I was taken off metho because it was making me so ill. I was told it would be followed up in 4 months to see how my RA was, that was last September. I emailed her seretary only to be told it will be at least next January next year to get and appointment. I have been going there for over 31 years too!! x