Carers giving medication

Living with Parkinson's Carers, friends and family
1

 

Hello everyone

I don't post often but hope you won't mind me asking for advice on an urgent problem. My mum, who has Parkinson's, lives with me, and has carers 4 times a day while I'm at work. It has always been part of the arrangement that carers give her medication, which isn't only for her Parkinson's - at nearly 92, she has an assortment of other essential prescription meds too, but the Parkinson's meds are 5 times a day.

 

Last Thursday lunchtime, I received a call from the care agency manager saying they are no longer willing to do this because of the way the medication is provided (although nothing has changed since they did their assessment back in June, and they were aware of it then). So, without any notice, they withdrew this part of the service and I had to rush home from work to make sure she got her meds that day. Since then I've been doing a combination of employing a carer privately just to give medication, and/or taking unpaid emergency leave to sort it out.

 

As I understand it, there are two issues, one relating to how the meds are presented for carers, and one to do with how they have to be administered. First, the care agency is saying they can only give medication from a pharmacist blister pack. Fair enough, but since the pharmacist (and the gp, plus two other national pharmacies) have so far been unable to source a blister pack with 5 compartments (largest available has 4), some of it comes separately. The pharmacist decided that the safest way to do this was to give us the Sinemet separately, since this only involves me adding in a single tablet to each dose of the others.

 

So I prepare mum's meds for the carers, popping out the tablets straight into a little lidded pots, and add in one tablet of Sinemet to each. The pots are very clearly labelled with the dose times and all the carers know where to find them. Mum knows about this arrangement, and is happy with it. However the agency is concerned about legal and safety issues. We have to comply if mum is to get her meds, but so far no one has come up with a solution and we now have us, the care agency, social workers, mum's gp and the pharmacist, all involved - and all wanting different things!

 

The second problem is to do with how the medication is given to mum, who has left-sided stroke as well as Parkinson's: most days, her co-ordination isn't good enough to manage the tablets herself, so the carer (or me) gives them to her on a teaspoon, which is also no longer OK, even though she is able to give consent to having meds this way.

 

 

Has anyone come across either of these problems, particularly a five-compartment blister pack?  This is a major issue for us at the moment - if we can't get it sorted I'm faced with either leaving work or paying someone else to come in just to give mum her medication.

surprise Carole

 

2

I'm real sorry LAM, but I don't have an answer. It is clearly a crazy situation that's just got locked in. Everyone's following guidelines, the guidelines don't mesh, and no-one can (or is prepared to) step out of line to break the logjam and get the sensible thing done.

I think this needs kicking upstairs, in various places. PUK should get involved - your mum deserves her meds. Someone at the agency must have the power (and hopefully the wisdom) to see the bigger picture and the right course of action. Talk to your MP - it's a point of public poicy to ensure you can don't have to give up work. There must be ombudspersons who can take up a case. Or patient's advocacy groups.

Or you could just bash your head against a brick wall on account of that would be less painful and more productive.

Do let us know how you get on.

Very best

Semele

 

3

Haha ... thanks, Semele smiley

And yes, you're right. For one thing, the social worker is not being terribly helpful and it probably needs someone more senior. I hadn't wanted to rock the boat any more (since this comes on the back of various other issues with this care agency), and I do understand they need to cover themselves, even if the manner of their doing so was, in my opinion, irresponsible. But these aren't "just" Parkinson's meds - although heaven knows if they were that would be bad enough - but various types of heart medications. Surely anyone with half an ounce of common sense would see that at nearly 92, withholding these is likely to be harmful in the SHORT term ... and if mum was living alone she would have been left without any medication since last Thursday.

When I spoke to the PUK helpline, they said they were aware of this being an issue (the lack of a 5-compartment blister pack), but hadn't come across a solution. The pharmacist has tried cutting a 5th strip off anothe blister pack and attaching it (with staples & sellotape) on the end of the main one! This seems barmy to me as it's just as likely to have been interfered with (as if that were at all likely!) as an opened pack, and I think it's less safe for mum as the division between the compartments is less secure.

 

We can't be the only ones having carers giving medications ...

4

Hi LAM, I hope you've managed to get something sorted by now if not then I would suggest keeping the Sinemet in the dose as it seems completely absurd for you to go to the effort of adding a single tablet to every single dose. If your Mum is taking medication 5 times a day then why not have 4 doses in one blister pack and the 5th one in a second, separate one. I'm not sure if you have certain carers coming at certain times or the same one throughout the day but if the pharmacist/you clearly marked the blister packs with the times and made the carers and their managers aware of this and have the care plan amended in the house (our carers have a file which has what they need to do in it) then I really can't see this being the big problem they're making it out to be.

5
Hi there, Just a thought but can't the sinemet be placed in the pharmacy blister packs for the 4 dosage times and then ask for an extra bottle for the late night dose and then you'd only have to have someone visit her late night for the final dose, (if you aren't home some nights, as happens to me sometimes). I was drawn to your post because I shall be reverting back to having meds assistance from carers (from my mum) . And I am concerned about the actual feeding aspect too. Apparently the carers can only assist but cannot feed the tablets, I.E they can only make sure they take them. However I do have a couple of regular carers who are OK with pl a cing tablets in mums hand which would be the same as the spoon situation. My mother is also blind hence she may need this help. Its worth trying to get the carers personally maybe book a a day off and talk to them directly and they may help at their discretion. It is very silly that community carers are not trained in this fully as they seem to be fine in comunual living homes. Wish you luck, defo start with serving the extra sinemet dose only out of the bottle, I know this works well.
6

Same situation when I asked at our local pharmacy abut meds in case of an emergency. Meds HAVE to be in blister packs which would mean two packs for meds. X6 /day.

However, the pharmacist then mentioned, a,"Medication Administration Form" and printed one off for me. It seems that although this is available, and can be used in lieu of blister packs, many care companies are reluctant to do so or to use one.

Maybe PUK can address this matter? That ALL care agencies use this method even if it means a little extra training for the carers.

My worry is that if I was ill or hospitalised then this MAS form would be the quickest and simplest way of my OH receiving their medication immediately, using   the tablets that were in the home, with no delay in waiting for the chemist to assemble a blister pack!! However, one medication that he  has could only be administered by a district nurse!! I can give it but not another carer. What a ludicrous situation, and one that worries me a great deal.

PUK, canvas for this change please, for a more sensible approach to meds administration by outside carers.

It's a huge worry for us 24/7 carers.

When we did have careers in for 6 weeks a while back, the times of their visits were so erratic that they could not possibly have given my OH their medication every two and a half hours. Thankfully I was here but.......what if I wasn't???

 

Instead of odd PAW  strategies such as, 'up your ......... (so memorable I have forgooten the third w word!), consider the nitty gritty of what IS needed for PWP and their carers

 

7

Thanks All - and sorry for the delay, i don't get here as often as I should, the advice and support is invaluable.  Although I did manage to track down a 6-compartment "blister" pack (Nomad from Surgichem have one with extra compartments, and the company were so very helpful and sympathetic I would recommend them to anyone), the situation we've ended up with leaves me to compile the last dose of the day, with agency carers doing the rest. Fine - unless, god forbid, mum (or I) were to be taken into hospital unexpectedly ... in which case, whoever was around would probably assume that the meds in the blister pack were everything. Given that she's just had the meds upped to include an extra evening dose, that wouldn't be great.

Yes, I agree benji - I've had to fight for regular timed care visits, and each time a new carer is rota'd on, she will (through no fault of her own) arrive with no knowledge of mum's conditions, or what she needs. More awareness of the implications of Parkinson's among care agency managers would go a long way to ensuring the safety of clients with Parkinson's.