NHS problems...

[marie66]

Hi guys, I need your advice.
We've been hanging about since August waiting on a prescription for Vimpat (E drug).
Things have now gone horribly wrong.
To recap - Our GP refused to prescribe the drug as his regional adviser told him it needed to be closely monitored in the first 3 months and the neuro should be responsible and they've been to-ing and fro-ing for nearly 4 months.

We got a letter today from the neuro saying as our GP would not prescribe the drug he advised, he has no other treatment suggestions and has discharged him from his clinic.

Can he do this?
OH is very far from stable.
He still has between 10 - 15 seizures every night and during sleep periods in the daytime.

He's still getting bloods done every 2 weeks and adjusting Phentoin doses accordingly as he's either too low or toxic - it's only weeks ago the out of hours NHS phone us to say he was at toxic levels and needed to reduce the dose immediately.

I feel this is wrong and he's been caught in the middle of an NHS power struggle where neither the neuro or GP want to back down.

I do not want to be left in the position we found ourselves 3 years ago where he was not under any neuro's care, hit a major crisis point with 30 seizures a day and took 5 months of hell to get back in the system and access a neuro appointment!
We won't forget that trauma in a hurry and neither will the people here who supported us throughout!

I phoned the neuro secretary and raised my concerns, I said, I felt to discharge him from the clinic while he still has such major seizure activity is in my opinion not adequate care and stressed I did not want to be left in the position I was 3 years ago when we were both left unsupported by NHS during a prolonged crisis period.

I'm not sure the call will do any good though.

We thought he was a good neuro and have not had to complain regarding NHS before!

Has anyone any suggestions on what to do next, any way forward?
Thanks,
(a somewhat stressed)
Marie x

[Sassy]

Hi Marie,

I can understand you not wanting to go through the hell that you had to endure before.

If your GP is refusing the drug your oh needs, always remember that you are ENTITLED to a second opinion and don't let the opinion of that one doctor put you off going for it. For now, that is all I can suggest that you try but if that fails, it might be worth trying your local CAB since they'll be far more "clued up" on how to progress than I am

[myra]

Hi Marie,
sorry to hear about your problems.
have you any way of getting to ninewells hospital in dundee.
my Garry was under the nuro there for 5 years and we were travelling from livingston 2/3 times a year to see him, he is deeply involved in the research of causes and is a world leader in epilepsy.
he is MR Robert Roberts,he is very good we loved being under him as he is down to earth.
We were referred to him by our local epilepsy doctor.


myra

[rosemary]

Marie, do you have the PALS service in Scotland , they might be able to help. If necessary take you concerns to the Head of the hospital. You do not need this added stress.

[Scally]

{{{HUGS}}} - I hope you get this fixed, dont let them off the hook.

[marie66]

Thanks guys!
There's no PALS here!
The situation is very complex from what I can gather our GP may not be totally at fault!
The regional adviser has said it needs close monitoring during the first 3 months and he should not take this responsibilty, it should be a neuro who monitors.

Judging from the scottish medicines consortium (SMC) I think he's just concerned and it could be rightly so...

•SMC accepted lacosamide for restricted use within NHSScotland. It should be restricted to use as an adjunctive therapy in patients with resistant, difficult to treat epilepsy and initiated only by physicians who have appropriate experience in the treatment of epilepsy.

I got the info here...

Even with this added info, it doesn't help the situation though if the GP seems to have reason not to prescribe (he's not an E expert) and the neuro won't monitor the inital phase!

marie x

[rosemary]

it doesn't help the situation though if the GP seems to have reason not to prescribe (he's not an E expert) and the neuro won't monitor the inital phase!

marie x

Between them they should know someone who can, another neuro perhaps??
How about you contact the drug company who manufacture the meds asking them for advice too.

[Myrtle]

Oh Marie
You don't need this and I do hope you get it all sorted.
((((((((((((((((((((HUG))))))))))))))))))))

[marie66]

Hi I tried to speak to the practice manager today and she declined!
The doctor will phone tomorrow - we will see what's said!

Very stressed but still hopeful one or the other will back down and try and help!
Hope so anyway as it'll save an ugly and prolonged struggle with NHS.
(((hugs)))
marie x

[Lil r]

Can you get your GP to write your OH a letter to say he is happy to prescribe the drug if OH is monitored by a neurologist for the first 3 months as per the guidelines? This takes the pressure off the doctor and back where it belongs - with a neurologist. Surely with this letter they cannot refuse? I'd be interested to hear on what other grounds they could refuse. This could be used as evidence if the neurologist refuse - and you should let them know. Could be counted as negligence if you can prove you OH will deteriorate if he does not receive the treatment.