Letters

Letters: Lack of Information Post Brexit is Nightmare for Kidney Transplant Patients

envelopeDear Orkney News,

What Brexit means to a kidney transplant patient in the highlands of Scotland –  is this turning into a nightmare scenario? 

I am concerned that my immunosuppressants may run out as it will become a logistical battle to get our lifesaving medications once the UK leaves the EU.

There must be no missed doses of medication- that is not an option .

If my kidney transplant fails I would need to be kept alive by a dialysis machine.

I lived this nightmare for 8 years before I received a transplant.

I have been given some insight about  what is happening in so much as being more on the emphasis on talk rather than official guidelines.

I don’t feel there is any of sense of urgency and nothing for the wellbeing of patients  – no effort at all being made to keep us informed .

According to a senior pharmacist in Raigmore Hospital   talks are  ongoing. That’s as nice as it goes but in no way is reassuring to those who are relying on lifesaving medication.

When I was on dialysis I just existed living hour by day, week by week, having my own celebrations that I made it through another treatment  – or whether I woke up to a new day.

There needs to be a real plan by the powers that be. Having  no information and not knowing that even I’m able to protect my health is a living nightmare.

We need our MSPs and MPS to  not ignore our real concerns when even the pharmacists don’t know what’s happening.

Incidentally I’m still waiting on the Scottish Parliament to send me an official letter in reply to the concerns I have raised with them.

Yours, Malcolm Morrison, Inverness-shire


 

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11 replies »

  1. I am in the same boat, kidney transplanted Jan2016. Our local pharmacy advises to discuss with renal clinic which I will attend mid August. Can you let me know if you get a reply from ScotParly?

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  2. Malcolm, Joe you and everybody else in the same boat have my sympathy but while it should be raised with the Scottish Government can I suggest that you chase-up the real culprits at Wastemonster as they and their weak leadership, infighting and getting the other 27 Member States backs up and with Corbyn offering no competent opposition just more internal squabbling on ‘Antisemitism’. Add to this no real contingency planning I have a real fear of total collapse come April 2019.

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    • Whilsti do agree in some extent cherry picking who is ultimately responsible is the devolved parliament they had advance warning problems, that, there was the likelyhood logistics and procurement problems that could arise but instead of looking at the priorities they,could face but the devolved Scottish parliament chose to instead of acting on responsibly , neglected the duty of care . to simply brexit was never going to hand a golden chalice to the Scottish parliament incedentally, i givenwas given warnings NOT to be proactive and negate the impact of brexit and responsibly and extra even a a 3 months supply to safe guard at least an msp said i should not to have advance of supply and another senior hospital pharmacy in raigmore advised me NOT to keep some yet despite these high salaried individuals they are prepared to allow ,my transplant will fail whilst only they talking utterly disgusting behaving subhuman well if these people are to prepared i shall expect them in to my dialysis i shall pleased to put their dialysis needles in for then and experience kidney dialysis 4 hrs monday , wed, fri afternoons for eight years afternoons oops sorry you wont get a choice what time why should you get choice i didnt and hope experience what even i still do although im not. Unless the transplant fails due rejection life is their hands .devolved health cannot be cherry pick because opinions may not fit in with political persuasions were talking peoples lives not some playground some game like oh it no she did or he did that end of snp campaigned for devolved health when it dont suit it they just cast it aside . .

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      • Malcolm, we could play the blame game for ever and a day but as no one yet knows what is going to happen it’s very difficult to carry out any sort of planning when those holding the cards are keen not to share info with the devolved Parliaments. I have a question as I’ve never been involved in dialysis, am I correct in believing that a number of your necessary medicines have very short shelf lives and that some need special temperature control, storage etc?

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      • Other than keep in out of direct sunlight dont mix brands and type as some tacrolimus are twice daily and others are once daily none of these are mixed same as the mycphenolate again brands not to be mixed only one thats ok to mix generic is prednisone that is a steroid the tacrolimus and the mycophenolate. Are immunosurpressents no doses not to be missed these are best knkwn commonly as anti rejection pills . so in respect there must be no blame on the Scottish parliament so do youthink there is no accountability. Is it because perhaps because they are majiority of snp msps perhaps was it a pointless excersize for the snp to devolve healthcare thas cherry picking reality bites dont it .as its the sole responsibility to the snp Scottish parliament , seems some like it butter on both sides yes of course this brexit and colatereral damage. Is directly by the tories but the Scottish parliamentare have got the responsability on health at the end of the day bit of shocker eh that devolved powers .and yes they kept quiet about for long enough .dont protect them make them accountable remember this you could just be easily be affected by this brexit fiasco .you dont know whats ahead.

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      • Yes Malcolm health is devolved but don’t blame Scottish Government for early consequences of Brexit as they have very, very openly tried to be brought in to the negotiations loop but have been cold shouldered by Wastemonster and its Tory elite at every turn.

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  3. Im not blaming persay how we all know the tories and their other subsevent parties from westmonster HOWEVER , it is the direct remit of the Scottish goernment to safe the wellbieng of its citizens in ensuring that, emergency contingency solutions are in place talk is cheap life is priceless and trust me i have had to on countless times fought fighting for my life for my existence and if i need dialysis as a result of my transplant failed or worse i will make the Scottish be accountable.think about it before you comment any more and actually grasp the conceot that what devolved power means clearly both. And, Both of your protectorate havent i cant chance to someone saying oh weve been talking like i have said talk is cheap

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  4. I still have my original kidneys but because I have an autoimmune disease, my immune system will attack them if I can’t get tacrolimus. I have used other immunosuppressants in the past but they were all much more rough on my general health (which is fragile) and transitioning to a different one – even if one is available – would be dangerous.

    Tacrolimus has actually been in short supply since last July, due to a production issue, so stockpiling hasn’t been possible in this specific instance.

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    • Hello jenny ,

      All i got from my consultant in raigmore was ” we havent heard anything but, dont worry we will take care of you ” it does not instill confidence that not even drs or consultants are in the dark or at worst may be subject to a gagging order by the powers that be . maree todds office seem to be quite expert on an epic scale in not giving proper and robust plans as they havent given me concise information as of today i still dont know other they are in talks .that has been the case even since before july of last year . my transplant immunosurpressants were changed a while ago to generic tacrolimus ( adoport) however as i took a bad reaction to the mycophenolate generic i had to go back on cellcept most which are procured within the european community . if we dont get a robust plan in place by the Scottish parly there will be grave consequence to us patients please get in touch with your constituency mps and msps the more of us getting in contact may push them wish i could tell you more but the parly seems to be holding back best wishes and good health

      Malcolm
      Ps if you get any info keep us posted

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