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My Draft Response to MP's Disrespectful reply

I can’t remember when the news was announced that the first ever drug for PPMS & SPMS has been licenced via Europe around January. The problem for us in the UK is that NICE are holding back Ocrelizumbab from being available to us via prescription or whatever other means to help us.

I’m not exactly au fait with NICE or procedures to receive the drug that has been proved to slow down the constant deterioration for PPMS and SPMS. Other than NICE are not considering the proven good effects, & seem to prefer even more testing!

I followed the MS Society request to notify my local MP (who will receive yet another rise in salary next month to over £76k pa. Fair enough £30k of that will be 40% high rate tax, but then she’ll no doubt claim for every expense. My letter was sent via the Society.

Today, I received a reply from the Rt.Hon m.p. and I was horrified she didn’t even mention my comments! Nor the drug I’d requested her to look into, or the difficulties and pain we all endure daily. I expressed Ocrelizumbab could help us to actually live our life, if NICE agree to release it to the relatively low percentage of SPMS & PPMS. Instead, she wrote (or copy & paste) solely on Cannabis - which I hadn’t even mentioned in my letter to her!

Thankfully, RRMS patients have access to DMDs, infusions, meds et al but this Ocrelizumbab is the FIRST drug proved to slow down the constant damage being caused to our shrinking brains.

I’m angry at the MP’s blatant swerve from my topic to a generalised explanation of the danger of cannabis and clearly stressed Cannabis use is unlawful!! Considering, I never even queried cannabis, but solely Ocrelizumbab, I am quite disgusted with the inefficiency of the St Hon MP and her team of staff not digesting the specific contents of my letter. Rant over!

Chrissie x

hi chrissie

you should write to her again stating how disappointed you are with her response.

what planet is she on!

typical tory [removed by moderator]

[removed by moderator]!

carole x

Hi Chrissie. Definitely worth writing again and adding your concerns on her lack of care when responding. Unfortunately, if no one makes any comment we all get ignored. Well done for taking the time to write to her in the first place.

She the mp is passing on the feelings off her goverment that is to where possible ignore the fact that disabled people exist

But then occasionally there are points to be earned by patting a poor unfortunate person on the head she will be there for that…

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Hi Chrissie,

I share your frustrations. It seems to me NICE are just looking to delay and restrict as much as possible the availability of this treatment. I doubt they appreciate the concept of unmet need that applies to Progressive MS and will just approve it for RRMS as usual. It doesn’t help when the MS Society helps to perpetuate the myth that everybody with MS is coping. They constantly downplay the high probability that pwMS will end up in wheelchairs and eventually bed bound. Also those who are in wheelchairs feel like they are written-off, whereas the truth is they need to keep their arms and hands working to have any quality of life, so rather than be written-off wheelchair users should be first in the queue!

Am I right, or am I right?

Thanks for listening,

Dave.

This is the Bart’s Blog view. “If you have PPMS and live in England you have to wait for NICE to determine whether or not ocrelizumab is a cost-effective treatment to slow down your disease progression. To help manage expectations I anticipate NICE saying no for the PPMS indication. Ocrelizumab will be priced for the RRMS indication and not PPMS. The impact of ocrelizumab on disease progression is less in PPMS compared to RRMS and because it will be compared to ‘best supportive care’ for PPMS it is unlikely to be deemed cost-effective. One solution to this impasse is for differential pricing, i.e. for Roche to charge the NHS much less for PPMS compared to RRMS. Is Roche and the NHS ready for differential pricing? I am not sure. However, the NHS accounting mechanisms are in place to do this. It will be interesting to see how the NICE negotiations play out.” Multiple Sclerosis Research: Newsflash: the wait is over ocrelizumab finally gets its EU marketing authorisation

Dear All, As well as letters from my local MPs, I have just received a letter from the Health secretary which agrees with my point that it is ‘unfortunate that there are no neurology services in my county’. Sadly the letter does not describe what the government might do to rectify the situation!

It is also worth noting that a high percentage of our MPs have private shares in pharmaceutical companies.

Wow, we need a revolution!?*!

Many Tory MP’s (and Lords) have shares in private medical companies and yet they are allowed to vote on NHS issues. How is that not a conflict of interest?

It plainly is, but most people just don’t care. The level of apathy is quite unbelievable at times. It’s hardly a surprise that politicians think they can get away with anything - most of the time they can and do.

I hope but very much doubt that Ocrevus will be differentially priced for PPMS, and I’m really not holding my breath for NICE approval - I would post my views on NICE, but I suspect they would be removed by the moderators. Put it like this, NICE aren’t very NICE. But I very cynical these days.

Jo x

So the “Fantastic Medical Breakthrough” to offer relief to the relatively low percentage of the population suffering PPMS is all hype?

For goodness sake we have enough to deal with, never know what the next few hours will bring, never mind what tomorrow will bring.

Why are we accepting these empty promises? I understood Ocrelizumbab is showing terrific signs of success to slow down progression, in some cases it stops further progression and, even better, could reverse some of the damage this cruel disease has caused!

Am I right to think Europe is prescribing this treatment, whilst England or UK is forced to wait until the self contradictory title of NICE are ready to decide yay or nay? Which, with luck, could be by the end of 2018.

I’m horrified at this process. Surely costs will be saved by treating PPMS to slow down or stop it Than to pay the long term costs of our use of the NHS.

This is the very FIRST potentially highly successful treatment of PPMS. Obvious I’m delighted the RRMS patients have several DMD options but it’s certainly it the right time for PPMS patients to have a fighting chance.

Why have the avenues of Media been allowed to announce this long awaited treatment if it is not actually available?

Chrissie,

Clearly , in order to “earn” £76k your MP has yet to learn how to read or comprehend the contents of the mail that you sent.

I only got a grade C at O level English but Comprehension was part of the syllabus so we know how to look for nuance and hidden meanings (between the lines) so you must have written your letter in such a convoluted way that the poor struggling politician and her staff could not work out what you meant. It must be someone else’s fault. You might try writing again near the time of the next election.

Disgusted…

Mick

Hey Mick, you may well have a point, I hadn’t even considered simplifying my correspondence to The Rt Hon M.P. How could I make such an oversight? D’you think the following is simple enough or should I enclose a dictionary with the letter?

To Rt Hon Mrs xxxxxx MP

May I point out my letter, to which you refer, had a specific subject, with no reference whatsoever to Cannabis. I am aware Cannabis is an illegal substance. I would never consider partaking of anything illegal, be it the use of illegal drugs or fabricating expense claims for monetary gain.

Had you read my letter in its entirety, you would surely have noticed the subject heading related solely to the Medical Breakthrough, namely the discovery of Ocrelizumbab. This new treatment has been proved as a treatment for Primary Progressive Multiple Sclerosis. Known as PPMS, it is a cruel disease affecting a relatively small percentage of our Country’s total population.

The marvellous, long awaited breakthrough was announced via all media forms, thus giving PPMS sufferers much needed hope.

Your reply is clearly a cut and paste response, using general information available to anyone using the internet. Unfortunately, you have referred to a totally incorrect subject!

I would have much preferred a personalised reply. Especially due to my efforts of typing and posting a letter to you, notwithstanding my time and effort to actually vote for you.

PPMS is a particularly aggressive form of generating ad hoc damage to our Central Nervous System (our spinal cord and our brain).

I recently discovered this Wonderful Breakthrough Treatment has been tested and authorised in Europe, excluding England because NICE is taking its time to decide if such treatment should become available via our N.H.S. I understand NICE will take at least until the end of the year before the group of fit and healthy personnel, working within NICE, can actually think about the breakthrough and make a real decision towards helping the PPMS Patients, whom thus far, have not had any treatment available. (surely a significant element of their job description, is indeed to make decisions.

I beg you, my Rt.Hon MP to investigate why the media have been allowed to shout from the rooftops of a marvellous medical breakthrough, when NICE will take so long to make a simple decision. NICE have created such unnecessary delays in treatment.

Trusting (albeit with care), you have the authority and ability to respond to this notification. I await your findings of reasons for such untenable delays.

I reiterate, the subject is NHS Availability of Ocrelizumbab to patients of PPMS. It has NO bearing on Cannabis or any other illegal activity.

--------------------------±----------------

Does anyone think this a good idea of too antagonistic? Please feel free to add/remove from this draft your own suggestions.

Chrissie x

Chrissie,

Not too antagonistic, sometimes plain speaking is needed. You have been neither rude nor blunt.

I stopped writing to my MP because the replies were just cut and paste from party HQ, neither listening to or addressing my concerns.

I hope there are some brilliant MPs who serve their constituents best interests, but most of those I have had experience with (directly & indirectly) seem to be self serving and only worried about the short term and being re-elected. Why they can not work together for the good of the people or country rather than the party or post parliamentary career prep is a big question for me.

Not sure they deserve my vote.

M

Chrissie, if you are able you could get an appointment at the MP’s ‘surgery’, the MP’s secretary will need to know the subject to be discussed (take a copy of your letter with you). A face to face response would be very interesting.

Many, many years ago I had a meeting with my MP about an issue that I felt very strongly about and even though the subject had been getting a lot of media attention it didn’t take long for me to realize that my MP was completely ignorant about the issue. Our meeting finished with him giving full support. Result!

Tippy x

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Some years back, I got a response from my (then) MP to a bit of support given to a campaign run by the 38Degrees pressure group.
Shortly after I was in communication with another forum member (many miles away) about a letter she had received from her MP that she could not read (but I had the appropriate software to).
Surprise, surprise, the two letters were word for word identical.

Obviously a Tory Central Office “suggested” response (just a bigger cut-and-paste).

Geoff

As Grandma says in post #15, copy the letter to any body who could be (should be) interested, with a list of the cc names at the bottom of your reply (love it, by the way) to your MP.

I think that the cover letter (to the editor of your local paper (as one example), or the Chairman of your local CCG, should have attention drawn to the last line of your draft - it starts to diminish her credibility, which she really does deserve.

See my post #14, and think about starting a petition within 38Degrees - its free to join and to start something

Geoff

Wow! Thanks for all advice and support. I feel ready to fight and the printer is so much mightier than the sword. I’ll write to my remiss M.P again, using c.c. names of influential politicians & NICE. Hopefully, my M.P may realise her actions, or lack of, could create a huge embarrassment to her party and personal position.

I feel hope within me, any obstacles in my way, will be used as stepping stones to my goal. There is purpose in my stride and determination to succeed. No room for complacency within this fight, as it is surely the enemy of success.

The worst that could happen is another cut & paste, which will add to my ammunition. I will post my second letter after Easter Monday, worth a try eh?

Chrissie x