Buprenorphne

[Chittleham]

Hi Joolsg. Just a bit of advice from you, my GP contacted me to say he couldn’t prescribe Buprenorphne unless the consultant would take responsibility. As it was a private visit it could mean a lot of expense for prescriptions. He is now going to contact Dr Fackrell to ask if there is anything else that would be appropriate. I was wondering if there is anything else you think might be suggested.

[Joolsg]

This is a common problem. Most GPs refuse to take responsibility for prescribing Buprenorphine even when a consultant recommends it. Infuriating.So you have 4 possibilities.

1. Change GP surgery & find a GP who WILL prescribe.

2. Ask GP to agree to a 'shared care' arrangement with Dr Fackrell.

gpathand.nhs.uk/ufaq/shared...

3. Ask Dr Fackrell to write your monthly prescription on a green NHS form and either post it to you OR you collect monthly from him.

4. Dr Fackrell writes a private prescription on a pink form & you pay private cost. Buprenorphine is very cheap so shouldn't be too extortionate.

It's so annoying.

Luckily my GP was happy to prescribe monthly on repeat prescription.

Postcode lottery is alive and well in the UK.

[Chittleham in reply to Joolsg]

Thanks Joolsg for the help have an appointment at the beginning of May I think the GP might go for the shared idea fingers crossed…….

[Joolsg in reply to Chittleham]

I know that many GPs refuse shared care agreements when you see the neurologist 'privately' because they think it's unfair on other NHS patients..But for RLS- there are so few neurologists who know about RLS that most people have to go private.

You could see if Dr Fackrell can add you to his NHS list.

Or if you can ask for urgent NHS appointment with a nearby neurologist who would agree to follow Dr Fackrell's recommendations.

This is an increasing scandal as more and more RLS patients experience augmentation and only opioids help.

[Gonzo123 in reply to Chittleham]

I had the same problem so decided to change my GP and they agreed to prescribe Buprenorphine. So if one does why can’t they all.

[Chittleham in reply to Gonzo123]

Thanks again Joolsg for those suggestions, you are spot on about augmentation I experienced it very badly at Christmas which meant another opportunity missed out to spend time with my family I don’t think our quality of life even enters the heads of the medics when you mention RLS. I will do a bit of research on Dr Fackrell to see if I could see him via NHS. Once again Joolsg many thanks it really is so helpful to have your information……/

[Chittleham in reply to Gonzo123]

Couldn’t agree more!!!!

[Mulberry100]

I was interested in your post and reply from Jools as I have been referred to Dr Fackrell by my GP. I was referred to him in 2017 and he recommended Neupro patches, which I was on for some years(we now all know how dangerous that was) but I accept that was first line treatment then. I recently happened to find the letter he sent, at the time, to my GP and noticed that he said he was handing my treatment over but would be happy to see me again. I am going to give it a few weeks to see if I get an appointment as my surgery won’t prescribe Buprenorphine and I wondered if, he was to prescribe, I would have a better chance of me getting it via him, even if I had to collect from the hospital. If there is a massive waiting time I will go privately and see what happens, I suspect may well have to pay for the medication. I feel so angry about the post code lottery regarding the prescribing of Buprenorphine.

Please keep in touch with how you get on. Wishing you the very best of luck.

[Chittleham in reply to Mulberry100]

Hi Mulberry. I share your anger and frustration, I went to see Dr Fackrell privately and found him very supportive of the difficulties we have as RLS sufferers. I will keep you updated and thank you for your good wishes. We are so fortunate on this site that we have people like Jools and Sue Johnston who have been through so much themselves and are so willing to help and support us I wouldn’t know and understand so much were it not for them.

[Mulberry100]

I totally agree with you, I have learnt so much from them, which has enabled me keep some hope alive! As a matter of interest are you in the BA post code, it seems the whole area is listed red when it comes to Buprenorphine.

[Chittleham in reply to Mulberry100]

I am not actually in BA but very close the whole area including mine is listed red for more than just RLS I have thyroid problems and that is another whole different ball game that we will never win………

[SueJohnson in reply to Chittleham]

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods).

[Chittleham in reply to SueJohnson]

Thank you Sue that is definitely a new one on me I take my Levo first thing in the morning but then I have breakfast approx an hour later. I have been doing that for years. Looks as though I need to change my habits and reconsider when I take them more carefully. Thanks again Sue……