Mental Health Week: why are the NHS denying me the treatment that saved my life?!
Updated: Jan 29
I am going to continue today with part five of the story of how I reached remission from resistant and severe type 1 bipolar disorder.
So far this week I have documented:
My story - outlining the progression of the illness
Importance of a thorough diagnosis
Description of treatment with a combination of high-dose levothyroxine and rTMS
The importance of educating the psychiatric profession about this approach
Today I am going to discuss a recent response I’ve had from my NHS Trust who are now refusing to even issue my repeat prescriptions.
I hate complaining about the NHS because we are so incredibly lucky to have it and it saved my life when I had a double pneumothorax (I punctured both lungs) when a horse double-barrelled me in the sternum. For physical health they’ve been incredible, and I would never fault the system in any way, however, for mental health it hasn’t been quite the same story!
I was convinced that the NHS would be able to help me with my mental illness, that’s why I persisted with all the different medications, treatments and hospitals for so many years. It wasn’t until I’d exhausted all avenues and nearly been killed by the disastrous ketamine infusions fiasco that I finally decided enough was enough!
The amazing news is that after going privately over two years ago, my new psychiatrist has got me into remission from this hideous disorder and (along with a big effort at regaining my confidence) I have finally reclaimed my life.
The not so good news is that this private treatment cost a small fortune, and now I want the NHS to either help me with the cost (still waiting for a response from funding application) or at least issue my repeat prescriptions. Unfortunately, they are refusing to help me!
Three months ago, I rang my GP's surgery to arrange an appointment to see an NHS psychiatrist again in the hope that I could cut the cost of repeat £350 private consultations.
I had to go through the whole rigmarole of being assigned to a new psychiatrist and wait for over a month, even though I’ve been an NHS psychiatric patient for twenty years. Anyway, I waited patiently and eventually saw a locum psychiatrist who I wouldn’t be seeing long term. I explained my predicament and she told me it wouldn’t be a problem, was thrilled to hear I was in remission and wished me well.
I was then issued a prescription of levothyroxine high dose for six weeks which I then assumed (naively) that I would be able to get on repeat.
Unfortunately, the psychiatrist who issued the prescription has now changed his mind and I am being denied this drug. It’s hard to understand all of this so to add some clarity, here is the letter that I received from them this week:
Dear Mr Robinson,
I am writing to you, and writing to your GP, to let you know my view regarding your treatment with high dose levothyroxine, after advice received at my request from an expert committee of the Trust.
In brief their advice is that continued treatment with high dose levothyroxine constitutes an experimental treatment and therefore is unlicenced and not supported by an adequate evidence base and therefore should not be prescribed by doctors in Oxford Health NHS Foundation Trust. The committee also advises that any patient receiving this treatment should be reviewed by both an endocrinologist and a cardiologist.
They advise that if you wish to continue this treatment it would need to be prescribed by Dr Zamar and recommend he arrange the additional reviews by endocrinology and cardiology if this is ongoing.
They recognise that this is not the outcome you hoped for and do therefore offer that I could refer you to the specialist clinic for treatment resistant depression, which would seem relevant to you.
I am sorry that this is not the outcome that you were seeking.
This letter infuriates me for several reasons which I will now discuss:
Cardiology and endocrinology
Dr Zamar has written countless letters back to my GP and former psychiatrist explaining that I have had a multitude of ECG’s and seen a top cardiologist. My heart rate was 67bpm when I had my most recent ECG just two weeks ago, which is well within the normal range and I have no significant arrhythmias or ectopics on an echocardiogram. This has all been thoroughly checked by world class doctors in Harley Street, and everything has remained stable for two years while on high dose levothyroxine. I have also been seen by a top Harley Street endocrinologist. The NHS psychiatrists would know all of this if they had read the letters.
Exhaustion of current NHS treatments
I have EXHAUSTED all avenues on the NHS mental health system, and I am in remission from bipolar disorder thanks to the amazing Dr Zamar, I will NOT therefore be taking up this offer of ‘specialist’’ treatment because I know that I’ve already tried everything they have to offer me and only ever had my condition worsened on the NHS (antidepressants and the bodged ketamine infusions fiasco).
I am also going to reply to this letter and inform this psychiatrist that when I had ketamine treatment on the NHS, I didn’t even have so much as my pulse taken! There was no aftercare at all, and I couldn’t get hold of anyone when I was experiencing insomnia and terrified about mania. The result was a full-blown manic episode, a traumatic three-month hospitalisation, and a subsequent 'mixed state'. How I am alive after that is anyone's guess!
This treatment is already in the medical guidelines
I would also like these psychiatrists to know that this treatment is in the Maudsley Prescribing Guidelines and that several other patients have already been treated successfully and safely with high dose levothyroxine.
The following two medical papers discuss the use of this treatment:
The frustration in all this is palpable! How is it ok to expect patients to have to put up with all of this agro and confusion?!
It’s not ok to treat people like this and I’m not just fighting to be heard and understood for my own benefit either – I’m doing it for other people.
In ten years (it probably will take that long) people will be getting this treatment for free and on the NHS with no questions asked and guess what? They won’t have to challenge the system or fight to get heard and they won’t have any side effects either, they’ll just be in full remission from their illness and able to get on with their lives!
I will continue in my mission to educate people about the importance of this treatment and then I will be fundraising to buy an rTMS machine for my local psychiatric hospital! – I’m not going to be accused of just moaning and complaining, I’m going to be doing something proactive and constructive too!
Tomorrow, I will be discussing some of the other success stories with this combined treatment.
Thank you for the continued support and please keep the suggestions for future posts coming!
Thanks for reading,
Speak to you soon,