Problems with Carers refusing to administer Thyroid Complex and Vitamin K2 despite letter from NHS Endocrinologist to doctor.

[Dramlouie]

My 94 year old hypothyroid Mother visited an NHS Endocrinologist at an NHS hospital and he wrote a letter to her NHS doctor stating.....'She can continue the Natural Thyroid Complex 3 tablets daily and K2 tablets daily which the daughter is buying privately'. The care company which provides carers three times a day is refusing to give Mum these tablets even when put into a dosset box. I live too far away to visit every day. But they give Mum T3 tablets which are not prescribed but the same endocrinologist wrote in the same letter...'I have advised her to continue the same dose of thyroxine and liothyronine'. Firstly they agreed and suddenly they have refused. Is there anything I can do? I seem to be fighting against bureaucratic mumbo jumbo. What am I doing wrong? Another care company had no problems giving Mum supplements out of a timed dosset box previous to this care company. Any ideas would be appreciated. Mum isn't eating much and I was relieved to think that Mum would at least be having the nutrients to support her thyroid and high blood calcium levels due to hyperparathyroid.

[crimple]

Maybe spell out that your Mum's medication is just as important as someone else's insulin. Has the carer company seen a copy of the endo's letter? I really can't understand where the "carers" are coming from when the stuff is already in dosette boxes. So much for "caring". Is it too much of an upheaval for you to find a different carer company?

I can appreciate the situation you are in as my Dad is 93 and we are having issues- different ones though! Good luck

[Dramlouie in reply to crimple]

This is the third lot of carers, one company's carer put Mum to bed then left then the office rang my Mum up and told her to go downstairs and take her medication. My Mum needs the carer to help her, the office worker was foreign and misunderstood the carer when she rang the office to say she had mistakenly given my Mum a double dose of her medication! Mum managed to get downstairs on her own, forgot why she was there so went back up but couldn't make it on her own and went back down the stairs and fell. Another company left her zimmer frame away from her bed and when she got up to go to the toilet she couldn't find it and had another fall. Its always carers, leaving bedroom lights on full all night long. Putting Mum to bed fully clothed, the list goes on. We now have cameras in most rooms. So its difficult to change carers again, these are the best ones but I think they are so strict with everything done to strict guidelines it doesn't give any leeway to an intelligent approach. We have had so many issues but the cameras don't lie, we have them in all the rooms Mum uses, if Mum falls we can go back and find out how long she has been there. I feel a lot better now. The carers know and keep to the care plan. Its well worth the money and they aren't that expensive. Good luck.

[silverfox7]

I feel for you. It can't be easy knowing mistakes are being made. Have they given a reason for stopping giving mum her medication? My first thought was to put in writing why the medication is important and also the things not to do like giving near to food etc and why but if they aren't wanting to give her the meds that needs addressing first. I find what helps me most is a rigid routine and it doesn't sound like she gets this or is ever likely to. Are you able to communicate with the doctor looking after patients there? He at least should know how important this is and should be able to pass this onto the careers and stress the importance.

[Debsoxford]

Lots of good advice especially from espeegee

I am a carer and I know it's very odd but different companies have different practices, I can understand carers not wanting to give from a dossett that you have made up as it could contain something other than what mum is supposed to be having and who is at fault then for administrating it to mum? (We all have to be accountable) and that is another point why aren't t be caters looking at the MARS (Medication Administered Record Sheet) and reading the care plan? I would suggest you ask for an urgent meeting with the care company manager/registered person and ask that such things as the privately purchased meds lights etc be added to the plan also adding that asking your mother to go downstairs on her own is not "a duty of care!" Which they have as care providers, and certainly as you now unfortunately know putting her at risk of falling I would certainly be looking for a better care company and making formal complaints! I wish you luck in a very difficult stressful situations x

[Dramlouie]

I get annoyed as its more time being wasted. The doctors surgery now isn't doing telephone calls so when i speak to a receptionist she says I need to bring Mum into the surgery to talk to a doctor. Mum already had a visit 10 days ago and the doctor didn't know why she was visiting because the receptionist didn't pass on my message that I wanted a prescription for Complan, that's all, what a waste of time it all is, its money being wasted, doctors time being wasted. I shall send a letter to her doctor and also a letter to her endo asking him for a private prescription and then hopefully something will be done. This is the third care company, the other one is having an investigation re Mum's fall. If carers followed the plan Mum would not be having falls, we can see in the cameras they tell Mum to go to the top of the stairs while they are sorting out her commode and then Mum tries to get in the stairlift on her own. Oh my. And.....why doesn't the medical profession know how to work stairlifts? It is unbelievable to see nurses etc try to climb over a stairlift with all their bags etc. It doesn't occur to them that it folds flat to the wall. But then that is another problem that sometimes they leave it flat to the wall so Mum could fall downstairs.......sorry, but watching the carers flags up all the bad training and idiotic things that they do, sitting Mum on the commode with her pad on, give me strength!!

[Angel_of_the_North]

Can you sue them? Or threaten to do so if they don't obey endo/doctor recommendations and your mother takes a turn for the worse? That might make them up their game. Certainly make a written complaint to the company.

[Kathrynbaggott]

I work in care and during medication training I have been told that medication should always be in the original packaging. Some medicines react to sunlight also there is a danger that they could be tampered with so should not be put in dosit box (it could be anything). Hope this helps all the best.

[helvella Administrator Thyroid UK in reply to Kathrynbaggott]

Trouble is so many people get at least some of their medicine in dosettes or other non-original packaging (e.g. from a bulk pack), and have no option.

[Dramlouie in reply to Kathrynbaggott]

I used to put everything in the dosset box but the carers used to give her levothyroxine from the package. Then a different care company said had to give medication from a blister pack so the sennas which were prescribed as required were put in so they were giving Mum two a day whether she needed them or not. As Mum takes 75mcg of levo the tablets are 25mcg and 50mcg but they couldn't fathom out that they were the same and as one was to be given well before food they insisted on giving the other with food. OMG the trouble I have had, as it has to go back through the doctor and they wouldn't believe me. No doctor telephone appointments so I had to keep dragging Mum to the doctor. So this added item is just nutri thyroid complex. I have shown the carer the package and the tablets inside, I opened it in front of her, I showed her the letter from the endocrinologist but she wouldn't give it to Mum, so I had to hand it to Mum then she asked Mum to take it. But I am not there all the time. So I am going to the doctor myself and asking them to put it on an additonal MARS sheet. What is happening, we hear that the elderly need extra nutrients as they don't eat or absorb enough and yet the doctors won't prescribe anything. I asked for vitamin D3 which goes with the vitamin K2 as Mum doesn't get any sun, but as the doctor did a blood test years ago and it was in the normal range they won't do another for Mum, but that was when Mum was fitter and active and going for walks outside everyday. I understand the reasoning that anything could be in the dosset box but I could be giving Mum anything anyway when the carers aren't there. Its just that I can't visit every day now.

[cwill]

I live in a rural area and employ carers. I was a physio and worked as a nurse assistant during my training, with plenty of experience of all care settings. Employing carers for me has been the hardest part of being ill. Some don’t like written instructions for the day, don’t understand that when a list is numbered it means do 1 before 2, fail to do what I need them to do etc. I have given up with agencies and try to employ my own but have been bullied by 2, let down by many and am regularly incandescent. My area means that they are hard to come by.

I understand just how awful the situation is. Please complain, raise the issues and let them know that not giving medication is simply not an option. Re health care professionals not knowing the basics about stair lifts, aids and basic health and safety practices I think it appalling.

[Dramlouie]

I explained the situation to a carer and she said to get a MARS sheet direct from the doctor and send it to the care company. So the doctor has filled one out and the care company has said its not acceptable, the only way anything will be given is if it comes from a pharmacy with a pharmacy label on it or its in a blister pack. They won't even give Mum her T3 anymore, even though the endocrinologist has send a letter to the doctor! I have spoken to the pharmacy and they said that its a legal requirement to have a legal prescription from the doctor. They cannot put a label on anything I have bought or put a label on it. Pharmacy said that have to find similar medication prescribed on the NHS. This is just absolutely ridiculous, I live 28 mile round trip to my Mum and her T3 is given twice a day, she has been taking this for years with me buying it abroad and if she doesn't take it she goes downhill, confusion and lethargy and won't eat. What am I supposed to do, this is just giving me unbearable stress now, what with me in the middle of a horrible divorce, I feel everything is bound by red tape nowadays. At my wits end. Don't know what to do now, everyone is saying can't give T3 or Nutri Thyroid Complex or vitamin K2, so they put the phone down and wait for Mum to get ill............I can't let that happen!

[Dramlouie]

So I am at a dead end. The carer company owner said they cannot and will not give anything out of a dosset box without a prescription. So her Nutri Thyroid Complex cannot be given even though stated on the endocrinologist letter. The T3 as it is not from the UK and undergone the rigorous testing procedures or has a pharmacy label on it they won't give it. So it has to come through the NHS which would cost them.....OMG I cannot believe it £300 for 28 tablets from Concordia. What is happening. The more I try and get this solved the more red tape, regulations and ludicrous price rises I find. I cannot believe it. The endocrinologist Dr Z won't issue an NHS prescription as its not funded by the CCG! So unless Mum pays £450 a month she is bound by regulations to forego her T3. I have tried pharmacies but they all quote the same price. I can give Mum the Abdi Abrahim tiromel myself but I don't live nearby. When I have queried this situation the reply is but we are protecting people who use T3 from bad manufacturing processes which cannot guarantee the quality of the the medication which would make your Mum ill! How about Mum not having any T3 and dying!! But that's okay as it won't be anyone's fault and no-one can be sued! What is happening to the UK, we are being tied up with bureaucratic idiocracy.