MP has acted on my email and replied SAME DAY - Thyroid UK

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MP has acted on my email and replied SAME DAY

nobodysdriving profile image
17 Replies

Following yesterday's blog.

My local MP has ALREADY acted and replied, I received the letter this morning :)

MP wrote:

Dear MS ----------

Thank you for your email of today's date, regarding your medication.

I am very sorry to hear of the difficulties which you describe regarding future supplies of the medicine which you need to maintain your hypothyroid condition and I can appreciate how dreadfully worrying this situation must be to you.

I am writing to let you know that I have written to the Chief Officer of the NHS Clinical Commissioning Group to raise your concerns and I will keep you informed of the response.

I very much hope that this will be helpful to you.

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nobodysdriving profile image
nobodysdriving
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17 Replies
Clarebear profile image
Clarebear

Wow - good service - let's hope that this gets things moving :) xx

nobodysdriving profile image
nobodysdriving in reply to Clarebear

I must admit, very good first impression, let's hope he does a good job :)

Kezzerb profile image
Kezzerb

Well done nobody's driving quick, brief and to the point response and good it was not a standard letter from MP. Hopefully all other sufferers will write to MP's. My letter is on it's way.

Hugs Kerry xxx

nobodysdriving profile image
nobodysdriving in reply to Kezzerb

thanks Kerry, hugs back to you :)

Hiphypo profile image
Hiphypo

Amazing - I shall write to mine today. You have inspired me !

nobodysdriving profile image
nobodysdriving

LOOOOOOOL

Clarebear profile image
Clarebear

£60k PLUS expenses...

But seems like this one might actually be some good :)

;) xx

joprince profile image
joprince

Wrote to my MP today too, I am waiting to see if he replies but not expecting anything before Tuesday as bank hols. Will let you know.

nobodysdriving profile image
nobodysdriving in reply to joprince

yes please keep us posted :)

Kezzerb profile image
Kezzerb in reply to nobodysdriving

Just to keep you informed I wrote to my MP in hereford this is what I wrote and his response.

Subject: Hypothyroid medication liothyronine.

Dear Mr Wiggin.

I am writing to you as a resident in Hereford and a patient in need.

My name is Kerry Bird.

I am a 53 year old wife and mother and have hypothyroidism illness which is

a life threatening illness if it is not treated with thyroid medication.

Due to the illness being life threatening all sufferers are medically exempt

from NHS charges.

Recently it has became apparent that I could not tolerate levothyroxine T4

and must avoid it and that I needed 'T3' (liothyronine) only treatment to

get well.

I am getting well on Liothyronine.

The medication I am on is unique in many ways, but also is 'quick acting'

(it enters and leaves the body fairly quickly: ie couple of days).

Also for some complicated reason, there is ONLY ONE provider for this

medication to the NHS, this is Mercury Pharma.

There is ONLY ONE type of liothyronine licensed in the UK by the MHRA. this

is 'Liothyronine 20mcg' by Mercury Pharma.

If I run out of this medication I will deteriorate EXTREMELY quickly and

within 3 days I may require hospital admission as on the second day of no

medication I already cannot get out of bed as I am in severe pain all over

my body.

When I went to get my repeat prescription from the pharmacy 2 weeks ago it

transpired that Mercury Pharma has a 'production problem' and liothyronine

will be totally out of stock for a minimum of 2 months but Mercury Pharma

predicts this will be a LONG TERM problem.

My pharmacist was unable to source any liothyronine.

I quickly alerted my GP and my endocrinologist at Warwick hospital.

Between them I sourced enough Liothyronine to last me for the next four

weeks.

But now there is NO MORE to be found.

I have contacted the MHRA and they told me the pharmacist has to work in

conjunction with the GP and between them two they MUST source something for

me.

The pharmacist has found an alternative which can be imported but it is ten

times more expensive than the one I am currently on, and other sources are

unlicensed (they are perfectly safe medications, used extensively in the USA

but just not licensed over here).

My endocrinologist already told me that the only liothyronine he will be

able to prescribe is the one which is licensed (ie the Mercury Pharma one),

however if none can be found then what do we do?

I am SURE my local PCT and GP have a duty of care and surely they cannot

decline to prescribe the more expensive version that the pharmacist can

source for me. After all this is only needed during this time of need then

eventually I will go back onto the 'cheaper version'.

Also unlicensed medication CAN be prescribed in the UK, the doctor

prescribing has to take responsability for its prescribig of course, but of

course with no medication I am SERIOUSLY worse off than with it so surely

the GP in this case can prescribe? after all it is the SAME medication/same

ingredients.

After all with no medication I will get too ill to look after myself.

I am acting now, 4 weeks before I run out as I do not want to find I get

admitted into hospital 4 weeks from now. My husband works in Libya and is an ex hereford forces man when I become very ill because of having no medication my husband would have to return home this would cause loss of our income.

The unlicensed liothyronine the pharmacist can source takes time to import,

so action is NEEDED NOW or I will not get it in time for when I run out.

Mercury Pharma has already told me there will be NONE until the very least

end of June and most certainly later.

PLEASE I BEG YOU/URGE you to contact my PCT and my GP and tell them they

have to act now.

I am spending every minute of the day worrying about this, please help me.

My GP is Dr. Watts Sarum House Hereford.

Many thanks

Kerry Bird.

This was MP's response:

On 7 May 2013, at 10:34, Office of Bill Wiggin MP wrote:

Dear Mrs Bird

Thank you for taking the time to get in touch. I am very sorry to hear about the problems you are experiencing obtaining your prescription of Liothyronine and fully appreciate how worrying this must be for you and all your family. I will of course do my best to help.

In the first instance I will write to Derek Smith, the Chief Executive of Wye Valley NHS Trust, asking him to look into the matter.

Yours sincerely

Bill Wiggin MP

Jacksatlast profile image
Jacksatlast

Great stuff, maybe we should blanket cover all our own MP's

bellk profile image
bellk

I have emailed the MHRA and asked if any will be available in June. But perhaps this clinical commissioning group is the one to push. Local pharmacy has managed to get me a month's worth, so I have a bit of breathing space.

Stourie profile image
Stourie

I went into my chemists yesterday and now have 3 weeks worth of t3. He was telling me that since mercury pharma had taken over from goldshield there had also been problems with eltroxin but don't know how bad it has been or if it is still ongoing. It's a disgrace that they just aren't coping with the takeover.

Jo xx

helvella profile image
helvellaAdministratorThyroid UK in reply to Stourie

Mercury Pharma didn't "takeover" from Goldshield - the company renamed itself.

It has recently merged to form yet another company:

Amdipharm Mercury (AMCo)

I do not believe that the company renaming, nor the merger, was in any way responsible for the supply issues. Supply problems are a regular feature of the pharmaceutical industry and, given the complexity of some manufacturing processes and tight specifications often needed, that is only to be expected. And there are other reasons as well.

Last year's Eltroxin issue occurred before the change of name and appeared to be technical. This year's issue occurred before the merger.

It most certainly becomes a problem when there is only one manufacturer of a product. But we actually see many supply issues come and go without issue because there are many companies offering effectively identical products so there is little to no impact on patients.

Rod

alangardner profile image
alangardner

as my own mp --ms Margaret hodge [ barking ] has a number of serious concerns with the nhs system ----she is also the chair of the public accounts committee----it may be useful to copy her office in with ALL of these concerns---- as she is a senior mp [labour ].....she may well carry a bit more weight to resolve the problem....just a thought.....

alangardner profile image
alangardner

forgot .....just send to her office at the house of commons

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