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Original poster

Now in week 6 of trying to get a GP appointment.

44 replies

itsgettingweird · 10/01/2023 21:10

I'll keep this brief.

Ds has a degenerative neurological condition.

Neurology referred him to OT and adult neurology in May as he turned 18 in the summer.

Heard nothing. Deforesting and asked GP via e consult for OH referral and got a message to say it had gone through and they'd chase it up.

Finally get a call from OT (paeds service) to say they can't take due to age (obviously!) and GP needs to refer to adult services and adult neuro rejected referral as seeing therapy.

Only the neurologist can deal with his medication he takes.

So now he's getting worse and twice now had had 3-4 hours where he can't walk (this isn't new but happened twice a year) and now happening every 1-2 weeks).

Part of OT referral was to look at mobility aids as he can no liver use his crutches.

We live on the first floor which means he then cannot get into the flat during theses times and HA will accept OT letter to assess if they can put a stair lift in.

Except we CANNOT get a GP appointment even a telephone appointment. Every day I spend an hour on hold until I have to hang up to teach the class and every time I ring later in day there's no appointments and I'm told it's not urgent because he can walk again by that point.

I've now ordered a wheelchair but that only solves part of the issue.

This is our NHS. Sad

When I asked what I can do the receptionist said call 111 at the time - he'd likely be able to walk again by the time I get a call back or complain to practice manager.

How have we got to the point that it's not considered an urgent when someone with a motor neurone disorder is deteriorating and the services he needs can't be accessed - and he can't access his home - and the answer is to take time off work to be able to stay on hold everyday until they can provide a telephone consult.

3 of the weeks I've been unable to get an appointment is because they told me it's urgent only and this isn't.

Watching my teenager going through this and being unable to help is breaking my heart.

I know no one can help but I just needed to rant somewhere so I can hide how worried I am from ds.

OP posts:
Original poster
itsgettingweird · 10/01/2023 21:10

Sorry- that wasn't very brief Blush

OP posts:
Sapphire387 · 10/01/2023 21:13

I am so sorry to hear this. Would it be possible to change GP practice? I say this because we usually get same-day telephone appointments with ours, and then face-to-face if appropriate.

parietal · 10/01/2023 21:13

when you do get through, tell the receptionist that he cannot walk right now. even if that isn't 100% true.

Interested in this thread?

Then you might like threads about this subject:

Dementia & alzheimer's
catsonahottinroof · 10/01/2023 21:15

YANBU at all, but be prepared to be told you are 'NHS bashing', 'doctors are the new teachers' and 'my GP is great, I can always get an appointment straight away'.
In your position, could you go to Pushdoctor or similar? There are some where they are NHS affiliated, and can do referrals.

Theredjellybean · 10/01/2023 21:15

Just say it's urgent for that day.

Original poster
itsgettingweird · 10/01/2023 21:33

I've said it's urgent.

They say it's not.

Because then they ask what it's for and I have to explain to get the GP to make the referrals.

I've been told to ring 111 when he can't walk but they cannot make the referrals just medically assess.

And tell me what? He has a rare genetic disorder? Which they couldn't tell me anyway because I'd have to tell them!

And I really hope no one thinks I'm dr bashing. I know they are busy and working in education I see the effect daily on cuts.

This is the realism of the current situation of the nhs.

If you don't have something acute and it's a long term health issue they don't have time or appointments to help Sad

OP posts:
stbrandonsboat · 10/01/2023 21:43

Could you write a letter to the GP and deliver it yourself to the surgery?

underneaththeash · 10/01/2023 21:45

You need to speak to the practice manager. I would just go into the surgery and wait.

roarfeckingroarr · 10/01/2023 21:47

This is nuts. It's such a postcode lottery - you can get an appointment on the day here (SW London). I don't buy into the worship of "our NHS" 🤮 but clearly the system is not fit for purpose anymore.

ProfessionalTeaDrinker · 10/01/2023 21:55

Can you ask to speak to the secretary at the surgery? They may be able to redirect the OT referral for you and speak to the GP for advice about the neurology referral.

Alternatively, call your paediatric secretary back if they made the referral in the first place and tell them what's happened, they may be able to redirect it for you?

Otherwise, I'd email or write to the surgery explaining to them what has happened, what you need and that you seem to be stuck in cycle which isn't resolving your son's issues and he's deteriorating.

ExpulsoCorona · 10/01/2023 22:16

Have you tried via the council? www.nhs.uk/conditions/occupational-therapy/

In our borough an adult can self-refer to OT

JennyForeigner · 10/01/2023 22:19

That's awful - I'm so sorry.

If you have a decent MP this is the kind of unlocking of the system that their caseworkers specialise in. It would be worth trying your constituency office.

JenniferBooth · 10/01/2023 22:39

The housing association need to buck their ideas up too

AnxietyGirl8 · 10/01/2023 22:43

You said you did an econsult before - can you do that now? Are the surgery accepting them? I only ask because I had a non urgent issue recently which receptionist wouldn't give me an appointment for because not urgent, but I did an econsult and the doctor called me back within 3 hours...

2FelisCatus · 10/01/2023 22:44

Pay for a private GP to write the referral. You can get an online appointment the same day.

TooHotToRamble · 10/01/2023 23:03

You don't need an NHS OT for your HA. Call Social Services and request an OT assessment.

Email or write to the practice manager requesting an urgent appointment and detailing what you have outlined here.

You could also try going in to the practice (it's harder to ignore someone standing in front of you) and insisting that it is now urgent as you've not been able to get an appointment for three weeks and your son does not have essential medication for his degenerative condition, don't mention referrals. The key urgent issue is the lack of medication. GPs can prescribe consultant only medication in some cases by contacting the consultants and requesting "advice" while you are on a wait list. I would ask the GP if they can do this when you see them given the issues you've had and his degenerating condition.

I would also contact PALS at the hospital regarding neurology's rejection of the referral if it's needed and was rejected for spurious reasons and he needs essential medication. Don't just get the GP to refer again. Neurology wait lists are notoriously long. I would also complain that your referral wasn't simply moved to the adult list when your son became too old for paeds (I assume he reached 18 while on the wait list) - I know that this doesn't tend to happen but it's utterly ridiculous that someone should have to be re referred or wait again because of age).

DrFoxtrot · 10/01/2023 23:38

It might be worth contacting the secretary of his original neurology consultant to see if they can sort out the referrals, considering that it was neurology and not the GP that did them in the first place. They may also be able to assist with the medication issue and you can explain that the referral mess has ended up with him having no monitoring.

We spend a considerable amount of time in primary care trying to sort out referrals and chasing things up in secondary care, which then takes away from our own work. I don't know what the answer is as in the middle is a patient needing help.

josephjohnson · 11/01/2023 00:09

E-Consult - stop calling and do your communication online, to request the referrals are redone.

Contact adult social services and self refer for a social services OT assessment. That's where there referral for a possible stairlift would need to go anyway unless the neuro OT team are integrated.

PALS re the rejected neuro referral, as they can advocate for you.

Re: stairlift - if the stairs are outside of your flat then a stair lift is unlikely to be an option so rehousing would likely be the best solution.

Good luck.

Ariela · 11/01/2023 00:25

Write a letter to your surgery . Completely throws them but they then have to action it.

Jessie878 · 11/01/2023 00:32

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

kathleen567 · 11/01/2023 00:41

Im so sorry. The NHS is crumbling sadly thanks to our government. It’s broken and corrupted. Instead of trying to recruit more Dr’s they want to start sacking Drs who take strike action in a service with 130,000+ vacancies. The reality is chronic care is only going to get worse

Original poster
itsgettingweird · 11/01/2023 07:12

JennyForeigner · 10/01/2023 22:19

That's awful - I'm so sorry.

If you have a decent MP this is the kind of unlocking of the system that their caseworkers specialise in. It would be worth trying your constituency office.

My MP is Braverman. She's never replied to any email I've sent her.

But that's a good idea otherwise.

OP posts:
Original poster
itsgettingweird · 11/01/2023 07:13

Alternatively, call your paediatric secretary back if they made the referral in the first place and tell them what's happened, they may be able to redirect it for you?

That's a brilliant idea thanks.

I'll try that today.

OP posts:
Original poster
itsgettingweird · 11/01/2023 07:14

AnxietyGirl8 · 10/01/2023 22:43

You said you did an econsult before - can you do that now? Are the surgery accepting them? I only ask because I had a non urgent issue recently which receptionist wouldn't give me an appointment for because not urgent, but I did an econsult and the doctor called me back within 3 hours...

I did an e consult back in October about the referral and GP expedited it and it went back to paeds. That's why I need to speak to them direct - it was the surgery themselves who said I need a telephone consult now.

OP posts:
Original poster
itsgettingweird · 11/01/2023 07:15

I have his medication.

What the issue is that is the drug isn't the only one he can take and he may need an alternative now that he's getting worse and it's no longer preventing the spasms of his legs to 90°. Only a neurologist can assess this and prescribe an alternative.

OP posts: