To think GP surgery are unfair?

[Mapoftheuniverse]

I’ve name changed for this as my condition is rare and I don’t want to be identified.

I have a neuromuscular disease. It affects all muscles but right now for me; walking, talking, swallowing and breathing are most affected. I’ve been in hospital in intensive care, needing a feeding tube and ventilator. After a second episode, they tentatively diagnosed the condition and asked my GP to review. GP reviewed and agreed with diagnosis and referrred me to neurology but said it’s a long wait. I had a private appointment and got the firm diagnosis. I cannot afford ongoing private. Neurologist prescribed a medication but it’s only helped a bit and GP doesn’t feel confident in adjusting dose without neurological input which I get.

I’m cross with GP surgery because they’ve not sent the referral. Apparently there’s a back log which I understand and I know I’m not the only one but this is pressing as I’m getting worse. Receptionist told me to be patient and suggested I see the GP but seems silly to waste an appointment.

The GP needs to see you to progress this further - s/he won't be able to take your word that it needs to progress - make the appointment and be a squeaky wheel

Make an appointment every day if you need to. The more you nag, the quicker they’ll offload you so to speak.

Good luck

I am sorry to hear this. I would write to the doctor (and get someone to drop letter in) and emphasise that you really need urgent referral as your circumstances are so difficult and you cannot manage without neurological input. I am a medical secretary (freelance) and do a lot of neurology in the private sector. It would be quite usual, in your kind of circumstances, for the NHS GP to contact the private neurologist you saw and enquire about altering the dose of your medication. Alternatively, you could write to the neurology consultant you saw yourself (explaining that you have not yet been able to be seen by NHS neurologist due to delays outside your control).The neurologists I have worked for, in these circumstances, would be happy to drop you or your doctor a line suggesting different dose or different medication if they could. (no fee for that sort of thing, either). If you do have to write to that neurologist as your GP won't, you could ask the neurologist to copy in your GP with their reply. Then, go and see your GP, armed with a copy of the letter so they can't say they didn't see it.

It’s admirable you don’t want to take up an appointment but if you are getting worse (and especially as this sounds like a very serious condition) and you need the referral then I wouldn’t view it as you “wasting an appointment”, I’d see it as an appointment that you need. I don’t know anything about how GP referral systems work but they must have an ability to move urgent referrals to the top of the list. If I were you I’d go and make a bit of a nuisance of myself. Squeaky wheel and all that.

I feel sick with anxiety at the thought of even phoning the GP, let alone going. Not sure why, I mean I do know why. I’m utterly traumatised by the last few months. It sucks. :(

I have emailed the private neurologist to see what she can do. I don’t know if she would prescribe over the phone. I might just pay and make another private appointment. She wants to see me in her NHS clinic. All I need is the referral (!) and as I’m known to her, had all the tests and diagnosed, it should be a quicker process. They just need to send the bloody referral! I’m giving it one more week before I’m politely complaining. I hate complaining. My surgery are very good and I like all the doctors and receptionists. I don’t want to make any enemies but nor do I want to end up in hospital.

How long has it been since you requested the referral?

It’s been a month. :( I’ve been referred to other specialists before and I’d say it’s been 1-2 weeks max.

I’d say that isn’t reasonable - Practice Manager here- ask to speak to your Practice Manager in the first instance and complain if necessary.

It seems crazy that in these days of electronic communication, a referral should take so long.

A referral is sending a letter. A month is a joke. Make that appointment and push for it. Where I work, the people who complain are the ones who get the results. Given the seriousness of your illness, YANBU to push very hard for this referral, they are treating you badly.

A month?! As someone who works at a doctors surgery and who helps out with referrals when needed please listen when I say you have nothing to feel guilty about and to ring and tell them to send it. Assuming they are on the same electronic system as us I think neurology referrals are a more detailed and complex form than other referrals. We have to get them done by the doctor before we can send it which might be where the delay is - but that's not your fault and this needs sorting.

It’s an electronic referral. I think previous referrals have been letters so don’t know if it’s any easier to send a letter.

I left a message for practice manager so fingers crossed!

I just looked at the neurologist’s letter and she called it an eRS referral

That will be the way the referral is sent but most neurology referrals are done via a form which is then sentvia the eRS system. The actual sending of the referral is easy and takes no time, it's the preparing the letters and forms to go with it which slow things down. Hope its been sorted