Just Moved to London and Have Some Questions

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Just Moved to London and Have Some Questions

Postby citta » Thu Oct 23, 2014 6:59 pm

Hi everybody, thanks for letting me join in! I'm Citta, I'm from Indonesia and I just recently moved to London for my one-year masters studies -- been here for six weeks.

I got diagnosed with fibromyalgia last year (with major complaints of neck and back pain, and burning sensation in legs) and I got my own private neurologist and physiotherapist that I could easily meet each week: I got prescribed with pregabalin, antidepressants and went through physiotherapy (plus using the kinesio tape) and regular trigger point injections (such a relief). I also got prescribed with piroxicam gel, and all these were covered by my health insurance.

So I've registered with the NHS the first time I got here, and the past three weeks my back pain and sleep disturbance and fatigue got so severe that I eventually met my GP yesterday. I have my one-year supply of pregabalin and antidepressants, so I came for my piroxicam gel. I then was asked to do some blood tests (for liver and kidney -- don't know how it's related) and was given some ibuprofen because she says ibuprofen helps a lot for back pain. My concern is that chronic pain is chronic -- I really don't want to depend on painkillers (this is why my neurologist never gave me one).

I asked my GP if there's such things as a referral to a specialist doctor/neurologist that's covered by the NHS, or if it's possible to be referred to get treated using the trigger point injections. She said that it's not possible to do that at a GP's office and that a referral may take up to more than six weeks.

So my questions are:
1) What's the procedure here to get fibromyalgia treatment that's covered by the NHS (as the pain clinic sounds quite expensive);
2) Is there any way to get referral to a neurologist / to meet anyone who's expert in neuromuscular.
3) Any suggestions of what I could do while I'm here (I called my neurologist and physiotherapist yesterday but well, what can they do from 7k miles away lol)
4) Would be happy to join if you have support groups and to meet you all!

Thank you very, very much for your kind help!
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Re: Just Moved to London and Have Some Questions

Postby Gracious » Mon Oct 27, 2014 8:35 pm

Citta, you will find working with the NHS very different from private, regardless of which country. You will also find the NHS systems can be different regionally too. So what is available to some, may not be for others.

Although you have a diagnosed chronic pain condition and you have found medications that have worked for you. You may still find that with new doctors they will look at Fibro based on NHS guidelines and this may be different from how you were treated privately abroad.

In regards to a starting point. You are going to have to give you new GP some time to get to know you. A good thing to do is request a double appointment, as a single appointment is only allocated 11 minutes and as you know fibro patients tend to come with a bit of history, so in making a double appt you will be allowing yourself and the doctor more time to get to know you and the condition and for the doctor more time to tell you what the NHS protocols are.

Since you have a diagnosis of a chronic pain condition, then you can request a referral to an NHS Pain clinic, this is free under the NHS, but it does mean you will be placed within the system on a waiting list. The only way to speed that up is a private referral and that will cost.

Pain clinics are different Regionally too, so how good a clinic, you would have to find out, but your GP can tell you where that clinic is and what it does and you can do some research on it too.

As for being referred to a Neurologist, unless there was a need too then the GP wont refer. So you have to be showing the GP why a referral was necessary. Ive been referred 3 times in 25 years, despite all my pain. So this gives you an indication it can sometimes be difficult to get referred and it tends to happen only when the GP feels they have tried everything at their level, before they will refer you to a specialist.

Here in the UK it tends to be rheumatologists and pain clinics who deal with fibro patients, but it depends on the complexities of your condition. Most GPs will carry out blood tests every 3 months on fibro patients because alot of the drugs we take are severe on the liver and kidneys and fibro patients are also prone to deficiencies, especially vitamin D. So that will be why the blood tests were done. Blood checks are common practice.

My best advise is to present your case again to the GP in a double appointment and establish with your GP what they can and cannot do at this stage. One thing you will realise referrals on the NHS can take some time, and if your not able to go private, then your going to have to manage being patient.....welcome to the UK NHS System.

On average most waiting times are 12 weeks, sometimes longer, so to be told six weeks....thats quick.

Hope this is of some help
With loving kindness
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