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

[itsgettingweird]

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.

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.

I'm so sorry - what you are experiencing is verging on negligent.

Contact your local MP to make them aware of the issue.

We experienced similar issues with our GP surgery and our MP's intervention was really effective.

I have the number for OT at social services. I've already rung them and they said it was the wrong number and needed to see NHS OT but I'll try them again and explain in detail and see where I get.

Thanks for all your advice.

I just wanted/ need someone to direct me to what I could do next and you e all given great advice.

I would agree with @DrFoxtrot that going back to the neurology Secretary is the way forward here. This isn't really anything to do with the GP other than them being your first point of call, as it sounds like your previous consultant thought everything was in hand but it's gone wrong. Hopefully the paeds neurology service can fix it as they know exactly what needs doing and how.

This is completely rubbish for you OP and I really hope you get sorted soon. We do spend a lot of our time sorting out these kind of problems but unfortunately with pressures as they are at the moment these are the patients who aren't getting appointments with GPs - short of cloning ourselves we just don't have the capacity. Our 'on the day urgent' demand has been close to double what we'd expect every day for the last five weeks. We can just about cover that but it means the more routine (not less important) issues just aren't being dealt with. We're broken and I know many of our patients are suffering 😢

This is absolutely terrible, you must be under so much stress. But I agree with pp, isn't this for neuro to sort out? They were the ones who made the original referral, and should be able to sort it out. It doesn't make sense to me to go through the GP.

Everyone else has made good suggestions but my mum was able to finally get a GP appointment by emailing the receptionists at the surgery explaining the situation whilst on hold. They called her back the same day to make an appointment. Might not work in your case but worth giving it a go x

Change practice? I got a same day appt this week, a call back last week and the same for DC, when we were then asked to visit the surgery, based on symptoms discussed, just before Xmas.

I’ve only skim read the thread, but have you got a local Healthwatch? They are v good here and seem to move things forward

Do you have a rehab/crisis/hospital prevention PT/OT service that you can self refer into?
Or a social care number where you can self refer to OT?
Where I am it is possible to self refer but appreciate it may be different where you are.

OMG I went on a hen weekend with Braverman once. Awful person - you really do have my sympathies.

Changing surgery isnt possible but strangely enough ours is the best surgery in the area! The one everyone wants because you can always get an appointment.

Sums up how much the system is broken.

Some excellent advice here and I'm really glad I came to Mn in my hour of need because I have some other avenues to explore now.

It's always a risk because sometimes people here can be arseholes for the sake of it but I really thank you all from the bottom of my heart for recognising this isn't a nhs bashing thread but rather a call for help from a desperate person.

I've found the best option is to call later in the day, lunchtime maybe, the reception team are less stressed and they haven't got 40 people queuing on the phone. I've also found a handwritten letter worked well

So I would definitely suggest emailing your practice manager or the surgery generally and explaining the circumstances and that you need an appointment by X date as you have already been waiting Y weeks and that otherwise you will escalate this to your ICB.

If no success with that then I would talk to Patient Experience at your local commissioning board - contact details here: www.hantsiowhealthandcare.org.uk/contact-us/patient-experience-and-complaints

Additionally, if previously you've contacted Braverman about government policy you can definitely consider trying again - she will have case workers who get assigned to deal with stuff like this whereas government policy/voting stuff may just get ignored. They'll have their own route into the ICB which should force action.

The issue is you don't know the game.
Receptionists don't understand that Ot referral is critical, so they won't give an appointment it will not be on their radar or understanding they will have triage training but it can't cover every nuance and your sons age will not help.
So tell them your son is struggling to move/in agony whatever it takes.
Tell them it is an emergency but not one that requires 999
Make two complaints the first that your son was referred to the wrong service and that the surgery have not rectified this... to be honest i have had this happen twice to me and both time they simply redirected the original referral I have no idea why they would waste an appointment on this as the go has assessed and referred.
Then complain about not being able to get an appointment.
No sure of your sons capacity to take the call but if he is able get him to make the call. I did this recently with my autistic son and I think the reception gave up trying to manage the call and gave him an appointment where I had failed.

As already mentioned Healthwatch if in your area is really good. It differs so much between practices as to what service you get just now. Our surgery offers same day appointments exh's about a mile away doesn't appear to see patients outside of routine appointments now and instead makes appointments with their out of hours service instead which must be a nightmare for people without transport as it's some distance away.

I told them he couldn't walk for 4 hours and couldn't get home and they said it wasn't urgent as he could now walk again!

Thanks for all your help.

I've rung his pead neuros Secretary and left a message so hopefully I'll get a call soon.

I explained I wanted referral to adult neuro put through again as he's got worse so 🤞🤞🤞🤞🤞🤞🤞🤞

My son is also autistic and I'm registered as his carer hence why I'm chasing the calls!

Hi OP, a fellow parent here with neuro dc and an awful MP too. You have my sympathy. I contacted our MP on a different issue and response was beyond useless. Digressing as a non-medical issue, but I am waiting for government change to get back on that case.

Hope u resolved your referral by now but I am shocked that paediatric neurologist hasn't automatically transferred u to adult neurologist - that's how they dealt with us.

Plus yor DS should be on at least annual schedule with them with an option of a ad-hoc contact if needed.

Thanks.

Still had no luck.

The peadiatric neurologist did refer to adult neurology.

The neurologist felt he'd be best served by rehabilitation medication but paeds wanted him seen by both.

It's adult neurology who have decided someone with a neurological condition doesn't need to be seen by them! Paeds have been fantastic.

This is appalling. As a paeds nurse we had it drilled into us that preparing for adulthood should start at 14 and not be a cliff drop at 18. Could you contact council for disabled children for advice or www.ndti.org.uk/resources/preparing-for-adulthood-all-tools-resources may also help