Over Medicating special needs adults

Lux23

My 27 year old brother is autistic and he is on a number of medications. These include epilum and frizum for his epilepsy and Olanzapine for concentration and I suppose to make him sleep. We know as a family that he is over medicated, he can sleep 12/15 hours a day (or not sleep at all) and he has big boils on his face that just won't go away.

He has a book and his carers must write down when he is given extra medication and some weeks they can be giving him valium every nigh. He is a fully grown man and if wants to stay up later, I don't understand why he can't, he doesn't need to be in bed by 9pm every night. I really believe they are using medications rather than having someone who can keep an eye on him while he walks around the house at night.

I am not looking for medical advice, but rather, would like to hear people's view on how best to deal with his doctors/nurses. We have brought it up with his house leader, but she got really aggressive and basically dismissed our concerns.

Surely my mother as his guardian has a say in how he is medicated?

Oink

I'm not a doctor but in my opinion giving someone medication because they are inconvenient to deal with is immoral, and certainly has to be against some deontological code.

As a house leader it seems to me that dealing with valid concerns in a reassuring and professional manner is a must. From what you say I think she did not deal with the situation appropriately.

EDIT: If you are right in everything you say (I don't know), then I think his dignity as a person is also not respected.

lilydonoghue

As a mother of a boy with the same type of autism your brother seems to have (severe, Tanner type), I think you need to start to email whoever those people are answerable to and if they aren't then write to HIQA and to the HSE. you may have a long fight ahead but wouldn't it be so worth it. it sounds like to me they are making their job easier. I took my son out of a service that were using valium to keep him calm but that was not fair on any of us and luckily they asked for him to be brought back. I said on condition that I speak to the psychiatrist and he explains all reasons for all meds. in the end my son's difficult behaviour was from pressure and from too many residents in his house. once these were addressed by a really good psychologist, he is fine, I hope you get this sorted. its very upsetting to hear this

FluffyAngel

This is Abuse ..plain and simple

http://www.irishtimes.com/news/social-affairs/disability-centres-challenged-over-use-of-antipsychotic-drugs-1.2233923#.VW1iFvUy1-0.twitter

As i dont know the details other than what you wrote,i cant comment futher

but i would be looking for deep answers to serious questioons
is there any advocate group you can contact?

lilydonoghue

Please let us know how this goes. I'm thinking of your brother and family a lot since I read this post. Its very upsetting as it could easily have been my son.

neemish

Since he is being prescribed these meds by a doctor, could you ask to have a meeting with the doctor to discuss your concerns?
Also, he should have a key worker you can sit down with and go through his daily routine. You could also request that your brother see a psychologist to see if there are any other options for managing his behaviour other than meds.

I think how you approach this with staff will be important. For example, are there waking or sleeping staff in his house at night? If someone is on a sleepover and working again the next day this could explain the night time meds. I'm not excusing it, but it could be an explanation. Has your brother's behaviour deteriorated over the last while? Maybe staff haven't been able to get support with this and are using meds instead. Again, I'm not excusing it.

Perhaps a soft approach of "i;ve noticed that John's medication use has gone up over the past while and I'm wondering is there something going on that I should know about" would be a good place to start. If you haven't gotten anywhere with the house leader, try his key worker. And definitely make an appointment with his doctor. If your mother is his guardian, she has a right to know what meds he is on and why he is taking them.

I hope that you get this sorted, it's very distressing to hear that staff still use medication to control people's behaviour rather than try to address the underlying cause.

Lux23

Thanks for your advice. Something else happened and I am just going to be factual about it and would like your opinion.

My mother advised my brother's house leader last week that she was going to bring him to the doctor and ask about his medication. She also said that he is been given PRN too much. (I think this means extra valium or olanzapine etc) Anyway yesterday, she received a call from the house saying "we have changed the doctors appointment and we will bring V ourselves as we know it is hard for you to bring him on your own". They changed the appointment to a day that my mother works so she wouldn't be available to attend herself. My Mum said no, I am bringing him myself on a day that I am available. Yesterday, a letter arrives in from the doctor with the rescheduled appointment for the day my Mum couldn't go. Luckily the secretary was on the ball and had no problem moving the appointment back to when my Mum could attend. She rang his house and told them straight 'I am bringing V to the doctor on x date, you're welcome to attend but I have many questions for the doctor'.

What would you make of this?

MrWalsh

Honestly I would advise your mum to speak to a solicitor and begin documentating everything that you have already noted in this thread.

Also start putting communications with the staff in writing and request responses in writing also.

Flippyfloppy

Definitely get everything in writing, and get onto a family law solicitor.

Lux23

What would a family law solicitor do though? Also, the place where my brother is, its just like a normal residential home - they don't have offices and they do everything over the phone so not sure we could ask them to do that when they have several other men in their care.

lilydonoghue

Write to HIQUA about this please.

Lux23

I just wanted to update the kind people on the thread. My mother had another run in with with house manager and we discovered that his social worker has quit working with the house. We sent an email to the House Manager's boss last night and will wait to see what she says. We also got an emergency appointment with a consultant neurologist and he is going to look into his medication. So hopefully it will be resolved without going with the nuclear options of a solicitor.

mg1982

Sometimes with these houses they are not staffed properly and they dont have the manpower to deal with adults with behavioral issues so medication is the first port of call. As someone whos worked in these homes it can be a very stressful enviornment for staff and patients.

Lux23

The thing is though, he hasn't got behavioural issues, he just wants to stay up and sit on the couch or roam around downstairs. He does it home quite a bit and we all sleep through it.

I also have another update, it seems the house is having a HIQA inspection this month and my mother was sent a form to fill out. Complete coincidence, so good timing there.