Disappointed with GP - venting.

[Kickabout]

I’ve just come off the phone with my GP who is notorious for sticking to the guidelines. I discussed coming off pramipexole completely. He refused to help with iron infusions or even supplements, I was told to buy my own. He also refused to prescribe me anything to help with coming off them ie opioids. I’m so disappointed but also not surprised. I thought that by being informed and prepared he might listen.

[SueJohnson]

You can buy your own iron supplements but you do need a new doctor. if you tell me what city you live in I may be able to provide you with a name.

You can also get a private iron infusion but it will cost about £800.

Who is your current doctor?

[Kickabout in reply to SueJohnson]

I’m in Consett in the U.K. he isn’t actually my registered GP, it’s just potluck who you get a phone call from.

[SueJohnson in reply to Kickabout]

I don't have any good suggestions for you.

I can tell you two NOT to see. Dr. Kirstie Anderson in Newcastle and Dr. Uma Nath in Sunderland.

Dr Rachel Wilkinson - Railway Medical Centre, Blyth is very helpful and will look into what is best if she does not know however she is a clinical oncologist. She was recommended by Marymill so you could message her to find out more.

You can get an iron infusion at Newcastle Upon Tyne Hospital Trust but don't know if you need a referral from your GP or if you would have to pay for it.

You can also message Jezee who saw Dr Nash and perhaps he found someone new who was better.

Let me know what you find out.

[Joolsg]

Not surprised.I suggest you send him a complaint and cc the RCGPs.

And attach a copy of the NICE cks guidance.

You might want to consider legal action for negligence/breach of duty on a no win/no fee basis. GPs are supposed to refer to NICE cks guidance which confirms iron blood tests and supplements are required.

[Joolsg]

I sent you a private message about legal action.I really think you should consider it.

This man is dangerous and negligent.

As you can see. NICE requires blood tests and treatment if serum ferritin is below 75ųg.

cks.nice.org.uk/topics/rest...

[Kickabout in reply to Joolsg]

Unfortunately it was a phone appointment as was my last one so it’s a lot easier to fob someone off than face to face. I can see that the guidelines say that iron levels should be looked at right at the start, I only have a current record because I originally had a phone appointment to ask about fatigue and pain in my muscles and joints.

[Joolsg in reply to Kickabout]

Definitely write and confirm what he said to you on the phone call and attach NICE guidance link and insist he treat your iron deficiency as set out.And do consider legal action.

Unless we do this- thousands more are condemned to poor treatment.

Dopamine agonists are dangerous.

GPs are happy to get patients hooked on them. And then they disappear when everything goes badly wrong.

It's time they cleaned up the mess they have caused.

[Kickabout in reply to Joolsg]

I’m going to consider all of this. Thank you.

[ChrisColumbus]

I've not checked back to see what your ferritin level is, or on previous advice that you have had here (which it sounds as though you've tried to refer him to), but you'd pointed him to NICE guidance on iron supplementation and on dopamine agonist augmentation?

cks.nice.org.uk/topics/rest...

cks.nice.org.uk/topics/rest...

[Kickabout in reply to ChrisColumbus]

My level 2 months ago was 37.5. He actually mentioned the nice guidelines on treatment. I’m hoping he’s having a good read of it now to see where he’s gone wrong.

[ChrisColumbus in reply to Kickabout]

I'm afraid he sounds like an all- too-typical medical man of a certain type (they're not all like him!): out-of-date, under-read, over-opinionated...

[Gmc54 in reply to ChrisColumbus]

That succinctly sums up 95% of the UK GP's!!

[ChrisColumbus in reply to Gmc54]

While the RCGP and the BNA refuse to add RLS to their curriculum, and NICE fail to update guidelines to represent latest research and practice, GPs and neurologists are at a considerable disadvantage. However, failure to read and follow even the imperfect NICE guidelines is the height of arrogance and stupidity.

[ChrisColumbus]

And the RLS-UK Dopamine Agonist Withdrawal Schedule:

rls-uk.org/_files/ugd/b0a19...

[Madlegs1]

Time to lawyer up!?

No win no fee-- I'm sure there are firms only too pleased to advise!

[Lauranath]

I have printed out the documents on the RLS UK website for DAWS and DA and arranged a face to face appointment. That helped and I am in the progress of coming off DA which is not easy but at least manageable with opioids.

[LondonGir]

Same as above. I am withdrawing slowly from my DA (Ropinirole) and couldn't have come this far without the use of Codeine. Which i take as Solphadine Max once or twice a day as needed. And a cocodemal before bedtime. Gone from 3.5 daily dose down to 1.25. Journey has not been easy, but I view Ropinirol like a poison to me!

[YoghurtLover2]

it is very frustrating Kickabout (your “name” made me smile 😃) I hear you!

We have to take care of our health … GP’s don’t have the time or often not the knowledge to do so.

I’m getting as much info as I can on this wonderful forum and working out my own health schedule.

I’ll buy my own supplements and need GP to prescribe Gabapentin and maybe opioid temp… but if she doesn’t want to with the latter I’ll just have to do without opioids.

I’m presently weaning off Pramipexole.

We can do it! I wish you the best very best for your journey. 🙏💕

[Kickabout in reply to YoghurtLover2]

Thank you. We can do it!

I’ve been smiling at people’s usernames too!