Had a SPK transplant and have to pay for prescriptions

leahkian

Well-Known Member
Messages
302
I had a pancreas and kidney transplant in April of 2015, the transplant went well but what the diabetes had damaged in side was then found out. I will not bore you with the details as i could be on for a day or two. When i was ready to leave hospital i had all my tablets and a sheet of when to take them and was told to reorder off my local GP but a year a go the leaders off our country said that only the hospital could give you them. I had a medical excemption card which ran out last year. So i asked when my new one would arrive which i got a reply that i would not get one as anti-rejection were not classed as a life saving drug, so i phoned my transplant nurses to ask her if this was right and she said yes. So i said what if i could not afford to pay for them my transplant would fail and i would have to start dialysis and then go on the transplant list for another transplant, she said i know that but the cons do not.I then got told that people who are on dialysis get free medication, so i looked further into the cost of the tablets i need to stop rejection and the cost of the transplant and if i needed dialysis and another transplant. A transplant like the one i had costs around £2000,000 from starting to leaving the hospital. The tablets would cost around £8k a year, i not a wiz with money but it does seem to me that making sure i get the tablets i need is the cheapest option. The Kidney Foundation are trying to get the law changed but are worried that the tories will cut off the people who need dialysis. To me this is Mr Hunt trying to sell the NHS off and Mrs May is helping him on the way. If i moved to Scotland all medication is free so no problem there but the amount of consultants, doctors and nurses who are trying to get the medication free as one person said you come in and give you new organs but by charging you for your tablets you are paying them back. A fellowship doctor who i got on with really well said i want to give people the chance of a better life and not to say if you cannot afford the medication there is no point having a transplant. That is my rant over
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
If you have had a successful pancreas transplant which is curative then you no longer have a medical condition which would qualify you for a medical exemption certificate.

If you need more than 12 prescribed items a year you can buy a 12 month pass for £104 which would cover all your prescription items for a year and save you money on the prescription charges.

If you think transplant recipient should be a medical condition that qualifies you for medical exemption from prescription charges perhaps raise this with transplant support groups/NHS business services/your MP.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
A chum of mine who has had a pancreas + kidney (then a few years on another kidney, called to see me this afternoon, so I asked her about medical exemptions.

Since she was T1 she has had an exemption certificate, and was shocked when I related your tale, @leahkian . She said it had never been in question.

Where did you have your surgery, leahkian?
 

leahkian

Well-Known Member
Messages
302
I had my transplant at The Freeman hospital in Newcastle and at the current moment my two children live with me full time, so i can get free medication as i get tax credits for the children. I am on ESA but they put me in the wrong group and say that i am fit to work but they will not change it, Even though all the consultants have explained that there is no way i could return to work, I still have to check my BS 2-3 times a week and was told by my consultant that even though i have a new pancreas you can still get low BS which make you feel like having a hypo.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I had my transplant at The Freeman hospital in Newcastle and at the current moment my two children live with me full time, so i can get free medication as i get tax credits for the children. I am on ESA but they put me in the wrong group and say that i am fit to work but they will not change it, Even though all the consultants have explained that there is no way i could return to work, I still have to check my BS 2-3 times a week and was told by my consultant that even though i have a new pancreas you can still get low BS which make you feel like having a hypo.

My chum, had her surgery at Addenbrookes, who still, apparently, categorise here in the diabetes category.

She's doing incredibly well, and have also met a chum of hers who is post-PKR transplant and doing well too. I hope you do too.
 

leahkian

Well-Known Member
Messages
302
Thank you but reading between the lines i think this is as good as its going to get. Please do not get me wrong i was happy to have my transplant as i wanted to see my children grow up, just as the consultant said i have been the unlucky one and yes i have but i am here a single parent trying to do the best i can as i love my children and i would never stop fighting while they need me
 
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zand

Master
Messages
10,784
Type of diabetes
Type 2
Treatment type
Diet only
It's great that you do get free prescriptions at the moment and when you can no longer claim them for free then the charge will be £104 per year. That seems like a good deal for £8000 of drugs? I now get free prescriptions but when I had to pay for my own I was paying the £8 odd charge for drugs which cost the NHS pennies simply because they were prescription drugs. Mine were also necessary after an operation.
 
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Daphne917

Well-Known Member
Messages
3,320
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I have free prescriptions because I’m on Thyroxine but, until last year when he was 60, my husband had to pay for prescriptions for his heart pills and warfarin. He used to buy an annual prescription card for £104.00
 

leahkian

Well-Known Member
Messages
302
Thank you for all the info but i have been to the renal clinic today for a check up and he said not to worry as there is away round it. The good news is that my transplant is working well, so that has been great to here. The bad news which i was expecting was that the damage it has done over the years can not be fixed and this is as good as it gets. I have diabetic problems and mental health problems cause by diabetes. The big problem is that i am 41 and am bringing up my two kids up alone and now after the transplant i can do less that before( due to feeling tired all the time) which means my children miss out on things. They say my temper is worse than it was before the op but it is guilt on my part not my temper. They do not tell me when somrthing is wrong, they tell my dad as they do not want to worry me but my dad tells me anyway. they have had to cope with such a lot at 12 and 14. My problems their mam moving away and leaving them, a couple of weeks ago my daughter broke down in tears at my dads because she wanted a mam not her mam, just someone who like her friends can go shopping with like most mother and daughters do. I even had to have the sex talk and took her to the doctor for birth control even though she is not doing anything. That was one talk i did not want to have as her father but i am getting off track. I have what i have and i take each day as it comes and as the consultant said to look at you people would not believe what your body has gone through, so if any of you has a magic wand can i borrow it please, and you know you are going to hospital too much when most of the staff in the WRVS no you by first name!!!!