How to navigate the NHS referral process?

[IcedBananas]

Is there anyone who understands the NHS referral process who can help me understand what I should do? My GP referred me to a specialist. The letter states that if I receive my appointment info by 11th Dec I should call them. I called the number and there's a recorded message saying they will only discuss amendments to appointments and if you're waiting for an appointment you will hear 'in due course'.

1. Does anyone know how this normally works? Is the referral letter right or the recorded message?

2. I have private health care through work who would cover me until diagnosis (done via a blood test usually) but they wouldn't cover treatment for it as its a chronic conditon. Is this worth pursuing or will this just delay things further with the NHS when I get referred back again and have to start right back at the back of the waiting list? NHS waittimes in my area are 3 months based on an website I just checked.

TIA for your help!

Firstly, waiting lists for appointments are huge at the moment so it's likely you will just need to sit in the waiting list.

Secondly, you can go private and wait on the NHS list. Also when you get a private diagnosis that can be taken with you to an NHS appointment for treatment.

Thank you @TheSparkling that sounds like a good option then if I just do the private option in parallel to speed up diagnosis. It's affecting my ability to work. A diagnosis would protect me at work as it's classed as a disability so I could ask for adjustments in the meantime

I shouldn't need to phone should I? Will an appointment just come through in the post over the next week or 2 ? Or do they send them out nearer the time so I shouldn't expect it got 2-3months? Thanks for your help. Not understanding the process is making me needlessly worry.

I'm trying to work out what letter it is you mention in your opening post, and also is there a typo if I receive my appointment info by 11th Dec I should call them

1. Is the letter you have a copy of the referral letter your GP sent to the specialist? Or a print out from the electronic referral service or similar?
2. Does it say if you don't receive your appointment info by 11th December you should call?

Normally I think you could expect to receive the appointment letter around 6-8 weeks before the appointment is due to take place. Prior to that you are on a waiting list. As you are no doubt not the only person confused by the different advice (phone if no letter / don't phone if no letter) and the lack of relevant info (you will hear from us about 8 weeks before your appointment) so that you can plan your life rather than simply wait on the NHS' convenience, I would get in touch with PALS at the hospital and explain the situation. They should be able to clarify how long before the appointment you should hear from the hospital and hopefully also talk to the communications team about improving the clarity (and consistency) of the information given to patients.

This stuff drives me bonkers - they may not be able to speed up wait times but they can surely communicate more clearly.

It really depends on the department and how they organise things there. I’ve had both happen.

I had one of those letters. I rang the number on the date specified and the person almost laughed at my naivety in thinking might get an appointment so quickly. I suspect they are out dated letters.
Either way they won't strike you off the list if you don't ring. Plus at least by ringing you can be sure they've got the referral and they may give you a clue how long the wait is.
Even when you get to see someone there may be tests, so more waiting.

Having said all this I have had several urgent referrals for suspected cancer symptoms and they have all be dealt with swiftly.

This is not a PALS issue imo. I understand the information op has written so it seems clear to me. The nhs offers appointments when it can, based on clinical needs and availability, of course it can’t be run based on convenience to patients!

Do you have the NHS app? I found referrals and appointment letters there before I received anything in the post. Having just navigated this I found this helpful. Hope you here soon.

I've just had an nhs referral. Appointment in June!
In the meantime I went private. The consultants are usually in the nhs too and can usually help/advise you with that referral once you explain the situation. Will get told not the way to treat the NHS but do what you can!

Thanks everyone I'm working through the replies

@tribpot it's an NHS letter title 'you have been referred to a clinic'. I can see it on Patchs which is a GP patient communication website that my practice uses. It says 'if the clinic does not contact you by this date you can phone them using the number below...' There's a reference number and an access code to quote. There's a message from the doctor also saying to call after 11th Dec if I have not received my appointment.

This is what may happen if I stay on the line despite the recorded message but its what I've been told to do. I'm baffled! I also have brain fog as one of my symptoms which isn't helping me navigate this kind of thing.

@Allthecatseverywhereallatonce great tip thanks I've downloaded and set up notifications for new messages

Update: I can see the referral on the NHS app it says 'Review by clinic overdue' and tells me to contact the clinic too

This has happened to me twice.

The first time I rang and was almost laughed at ad the waiting list was 18 months.

The second time I didn't ring until a few weeks after the date when it transpired there had been a mistake and I should have have an appointment weeks earlier - they fitted me in the next day!

I saw my 'urgent' referral on the NHS app - it said I should phone the appt centre if I hadn't heard past a certain date. I tried phoning but was a call queue of 20 waiting apparently - I did find an email address though and got a pretty prompt reply telling me the wait was 12-14 months "but we hope it might be quicker as you've been triaged as urgent" It's been 5 months and still waiting 🤷‍♀️

Given the upcoming doctors' strikes the existing appointments are probably being rescheduled first. Unfortunately. you may just have to wait. Is there an excess on your insurance? You could call but may need a gp letter to get a referral to right consultant. Dh has swapped from private to nhs with same one, but had to wait the nhs time for an appointment.

Disability protections are based on the impact and duration of your impairment not your diagnosis.

Have you asked work for an occupational health referral to get support in place?

My advice is to call them and confirm they have the referral.

Multiple times recently I've been told I've been referred and not been. Even had letters saying I will get an appointment and to call on x date if not had an appointment. When I phone on x date I'm told they looked at the referral decided I don't need this department and referral went to another department. When I phone the other department they don't have a referral. This has happened multiple times. All this time I'm deteriorating and haven't seen a ducking dr because they keep saying not their department. I now shit myself, fall over, drop things, numbness tingling, pain pain PAIN. Over 2 years and still not been referred to the 'correct' department still being passed around.

Phone every two weeks to check you are still on the waiting list. Honestly I wish I'd done that instead of repeatedly waste weeks/months thinking I'm on a list I'm not on. And in the meantime go with the private diagnosis. Once you have the diagnosis they can't mess about pushing you onto other departments can they

I called and stayed on the line despite the recorded message. I got a really nice lady who confirmed that they have the referral and it's all following the right process. Wait time is 2-3 months so I'll speak to the private insurance to see if we can get the diagnosis that way and take that to the NHS appointment as per PP suggestion.

@PurpleBugz that's so awful! I hope you've put in a formal complaint. Really hope they get you to the right person ASAP!

Thanks for the advice about diagnosis. I hope I can get that far with the private health care.

Honestly I don't know what to ask them to do for me and I'm worried I'll ask for support and then it'll turn out its not this condition and they'll be rolling their eyes. I have brain fog fairly frequently, sporadic things like fatigue digestive problems and dizziness and heart palpitations. I'd like them to let me work from home more but other than that I'm not sure what else they could do. I'm also in the process of (hopefully) an internal job move which complicates things further.

Acas explains well what disability means in this context. If those symptoms meet the threshold, then it's a disability regardless of diagnosis.

https://www.acas.org.uk/what-disability-means-by-law

The reason I suggested occupational health is because they should have a far greater knowledge of what kinds of adjustments could be made and would be suitable.

They also usually offer a view on whether someone meets the legal definition of disability.

None of which requires an overarching diagnosis.

@user628468523532453 that's really useful thanks!