Whirly Whirly bird.

[HipHop1972]

You’ve heard about the whirly whirly bird that flies in ever decreasing circles until it finally flies up its own orifice. Well if not then you’ve probably heard about me HipHop1972, I am that whirly whirly bird.

With my surgeries inability to treat my severe refractory RLS quite possibly due to the cost of the medication rather than their excuse, that, they don’t prescribe Opiates as they are off license in UK and not approved by the NHS for treatment of RLS I went about trying to locate a GP Surgery who was willing to prescribe Opioids. I know the advice given here was that you can join any surgery within a reasonable distance from where you live, but, I’m afraid it doesn’t work quite like that. I have a surgery in the next village, 2 miles away but they won’t talk to me as I’m outside their zone, said I needed to go on line and look up GP Finder, enter your postcode (area code) and it would list GPs in your location that you could approach, OK, did that and went in to see them. I was asked why I needed to change as I was already registered with a GP. I explained that they were unwilling to treat my condition and generally only wanted to know if they would prescribe Opioids if covered by a diagnosis and letter from a Consultant Physician. They wouldn’t answer but handed me a bundle of forms to fill in with my request to change medical practice. Well I didn’t want to have to be accepted by an alternative practice to then be told that they wouldn’t prescribe Opioids.

Having read on this forum about a Doctor Robin Fracknell ( apologies as can’t remember name of lady who posted recommendation) but he works out of the Sulus and Royal United Hospital in Bath in the county of Somerset a long way from where I live in Cheshire. Anyway I contacted the hospital and was given details of doctor Fracknells secretary. At this stage I was feeling I might be getting somewhere. I telephoned his secretary explaining why I needed a consultation with Doctor Frackbell, and was willing to see him privately if need be and was told I had to have a referral from my GP before I could see him. Perhaps this was rather naive of me not realising I needed to be referred. Anyway I have written to my GPs requesting that they refer me and am awaiting a response. Now if my GPs agree with my request I then get to see Dr Fracknell and if he agrees to prescribe either Methadone or Buprenorphine he presumably can give me an initial prescription on a trial basis but in the end I’ll still need a GP in my home town to continue providing me with that prescription. Now my doctors have refused the request previously made by Doctor Jose Thomas in Cardiff, who is unable to provide me with a prescription direct, being in Wales and NHS works differently there from England and I have to change GPs in order to find out if they will be willing to write prescriptions for Opioids you will understand why I’m so very close to disappearing up my own Orifice and fully understand why RLS has such a high suicide rate.

HipHop1972 😤😡🤬🤯

[SueJohnson]

That is terrible.

[HipHop1972 in reply to SueJohnson]

It is Sue, Doctors running scared of litigation, common sense no longer has any part in medical decision making where the patient now comes second. We live in a risk averse society in this country, heaven protect me from this nanny, mamby pandy state 😡

[Joolsg]

I utterly despair. The treatment of RLS is so appalling.Buprenorphine has been miraculous for me.

I asked King's College why they don't prescribe it to more of their patients and they said the main reason was because it is red listed in so many prescribing areas. Therefore, even if a neurologist recommends it, the GP can refuse.

We need change. And fast.

[HipHop1972 in reply to Joolsg]

I agree Joolsg but am afraid it will take something really tragic and drastic to affect change. I think I may be wasting my money going to see doctor Fracknell in Bath if I get a referral from my GPs. I’m now surviving on Solpadeine but only has a life of 2-3 hours. Spend more time awake at night and sleeping during the day as much as possible.

Anyway of RLS-UK getting on the today programme or one of the morning shows where people are interviewed about current issues. I appreciate that you are pushing at doors and jamming your foot in them to get people to listen to you, it’s greatly appreciated by us all But I think you know that 🤗

Best wishes HipHop1972

[Joolsg in reply to HipHop1972]

Hopefully a film will be ready soon and we can send it around TV companies.

[Elisse3 in reply to HipHop1972]

Hip hop i don’t know if cocodamol is stronger than solpadeine it’s 8mgs codeine and 500 Paracetamol and can be bought otc in England so should in Wales Oh i see solpadeine is same strength as the cocodamol 🙁

[HipHop1972 in reply to Elisse3]

Hi Elesse3. Thanks for your reply, I did try Cocodamol but for some reason it didn’t work like Solpadeine so must be the combination of ingredients

Best wishes HipHop1972 😀

[Claire_1c]

Oh HipHop, you’ve done everything right, and still you’ve come up against a brick wall.

So, I was also asked for a referral before being given an appointment with Dr Fackrell. This my local GP practice was happy to do, although they told me point blank they would not consider prescribing opioids, even if he advised this.

As you know, that’s when I began hunting around for another GP practice. Tbh I fully expected the difficulties you’ve encountered, but for some reason I was lucky, because the ‘out-of-area’ practice I applied to had only one stipulation - that I sign a form acknowledging home visits would not be possible.

I’m so sorry you haven’t found an accommodating practice. Can you keep looking? I know you’ve already been round the houses, but this current situation in the UK leaves us with no choice but to keep fighting when we are at our most low.

Before you book with Dr Fackrell, I’d be really sure he can issue a private prescription that will be accepted by a pharmacy. His secretary told me they had never had a prescription refused, but I didn’t get to test this out, as I knew my new GP would agree to take over.

Don’t give up just yet! And definitely don’t disappear. It’s of little consolation, but you are keeping us brilliantly entertained with your scathing comments.

[HipHop1972 in reply to Claire_1c]

My very Dear Claire_lc. Thank you for replying to my post and I’m pleased I keep you entertained, I’m not being sarcastic, I mean it. My sense of humour and outlook on life is what keeps me going so I’ll endeavour to try and widen circles again as I don’t believe the alternative would be particularly pleasant 🤣

Best wishes HipHop1972 🤗

[Claire_1c in reply to HipHop1972]

😂🤭🤫

[Drls]

hello hiphop1972 - I really hope you get somewhere this time - it really is a living hell that so many of us are left dealing with -

FYI you csn get much stronger co-codomol via your gp - plus have you been on pregabalin at all? ( I’m sorry I might have missed your history and what has already been tried ) plus since Targinact ( oxycodone ) is on license there is no reason for this to be refused.

Please keep smiling and joking - it really is the only way and keep us informed

[Elisse3 in reply to Drls]

Hu Drls actually targinact has been refused to me by my doctors even though i explained it’s licensed for RLS. I have to see a neurologist to get him to allow it first. I tried to argue in a nice way to my doctor saying i don’t understand why you won’t let me just try it. She said about doing a patient no harm. i said what about helping the patient. So it’s been think 3/4 weeks now and expecting many more weeks til i get an appointment through.

[Drls in reply to Elisse3]

Yes Elisse on reflection I had to get a neurologist to ok it before I got Targinact… and then it was not good for me anyway when I did get it! So much waiting around and so much refusal - the whole thing is awful

[Elisse3 in reply to Drls]

I am also not sure targinact will be ok for me either. I am not good at taking meds due to low tolerance. So i also thinking the weeks of waiting the appointment then trying it to find i can’t tolerate when all my doctors had to was let me at least try it grrrr

[Weezie99]

Oh wow. That sounds like a nightmare! I'm so sorry you have to go through all that nonsense. You should be able to choose your doctor!

[HipHop1972 in reply to Weezie99]

Hi Weezie99, thanks for support and yes I should be able to choose but it’s virtually impossible as you appear to be blocked at every turn.

Regards HipHop1972 🤯

[Ced60]

How close are you to Cheadle in Cheshire ? If not too far then go and see Dr Murphy at the Alexandra - he organised an Iron Infusion on the NHS and wrote to my GP to get them to prescribe Buprenorphine

[HipHop1972 in reply to Ced60]

Hello Ced60. Thank you for the info, I’m not to far from the Alex. My Ferritin levels are fine so don’t need supplementing. My current Specialist Doctor Jose Thomas in Cardiff wrote to my GP recommending that they treat me with Opioids as these were a last resort as extreme issues with Pregabalin side effects. Anyway my surgery refuses to treat me with Opioids, absolutely no move on that so someone else writing to them will make little difference. No doubt you have read my other posts about trying to find a surgery in my area who may prescribe Opiods. No go 😡

Regards HipHop1972

[HipHop1972 in reply to Ced60]

Reply to Ced60. Firstly a small apology for my reply this morning, I don’t think I gave you the appreciation your reply deserved, my excuse is that I was a bit grumpy due to sleep deprivation. You are very fortunate to have a GP with the balls to stick his head above the parapet and give you prescriptions for Buprenorphine. A very cheeky question, I’m within striking distance I think of your GP. Do you think they would be willing to take an out of area patient if I sign an agreement not to request home visits by a GO or District Nurses.

I fully understand if this is a step to far but sometimes if you don’t ask, especially when options are virtually zero.

Kind regards HipHop1972

[Ced60]

it’s mad isn’t it - I’m about 5 miles from the Alex and have no issues at all sorry you are getting nowhere

[Jumpey]

I'm so sorry you are suffering. Please don't give up looking for a new gp.