NHS have referral but have no appointments

[Hadituptoere]

I have 3 outstanding referrals (maxo facial, rheumatology and audiology) so all very different issues and all been outstanding for a good while (audiology wait has been since 2021!).

Im being told by the booking team that they have my referrals, all accepted but just awaiting for the backlog to be cleared and for me to be seen but cannot tell me when this will be; could be months/years.

What am I meant to do? GP is at a loss, has no clue how to help or move forward, I’m in agony with suspected lupus, hearing loss is worse (I’m profoundly deaf and specsavers/boots etc won’t see me due to me needing specialist audiology, I can’t afford to go private and even if I did I wouldn’t be covered as it’s pre-existing conditions now.

I have no idea what to do or where to turn anymore. I have 3 young DC who I’m
plodding on for daily but it’s getting harder and harder - I’m under east lacs nhs trust.

That's appalling.
I don't know if this is possible but could you look at other hospital trusts? Some may not have such long waits? I know rheumatology is bad at my local trust becasue there is a shortage of rheumatologists but certainly the audiology is not so bad. I was seen very quickly at audiology last year.

The other option is to go private for the initial consult if you can afford it, so not as expensive as long term private. They may be able to recommend interim treatment to your GP until you get seen on NHS?

Thank you for replying.

I have looked into private treatment for maxo facial and it’s £350 every 3 months so definitely not something I can afford, audiology has to be long term and nothing that can be sorted through an assessment (deaf since birth and moved into a new area and been waiting ever since), rheumatology again long term health concern so would need a long term plan unfortunately.

I have asked about being referred to a different trust but told it’s just as bad at neighbouring trusts and out of the GP’s remit to do referral to them.

Im basically stuck with no care and no plan on when to start or get better, I just have to wait I’m being told but not told when the wait will end, it’s so frustrating.

I have the same problems and also relocated early last year which stopped everything as my records and Consultants' urgent' appt. letter got lost......

Managed to finally receive a date and it's just been cancelled again due to 'unforseen circumstances' . I can't afford private care and I think I am being discriminated against as I will now be one of the ones who have been waiting so long we don't matter.

It is dreadful at the moment and will not get better until the whole referral , 2nd triage , 1st appointment to read the notes etc - then the procedure appt system is radically overhauled . There are just too many barriers in the way of proper care that I have already paid for through my life long taxes.

It's a sad state of affairs. My hospital (very large teaching hospital) has stopped accepting rheumatology referrals as they simply can't manage any more patients. As an existing patient - the standard of care has dropped noticeably since 2019.

I know of people who have moved house just to get treatment. But there are no guarantees and very different when you own property and have children.

I just don't know how the NHS can recover tbh , it seems so far down the road of failing I don't know what can turn things around .

I do think it's becoming a two tier system , if you can pay for private treatment all good and everyone who can't will have to take their chances .
I really hope you get some help OP it's dire to be left in pain with no hope on the horizon

I have this. Broken back referral chased, they have it, it's marked as urgent, no appointments available.

Physio, referred by GP, agreed by discharging consultant, referral received, no appointment.