PSP Association
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Absolutely exasperated!!!😡

Hi all, some of you responded to a recent post of mine looking for advice on medication to help with mum's anxiety/howling/screaming. Thank you for all your advice. Dad took mum to the GP today to talk about the current problems with mum and requested some help ( by way of medication which some of you suggested) the response from the GP was No!!!!!!! He would not prescribe anything as he said it was a deprevation of mum's liberty...!!! To say I am stunned by this response is an understatement. The doctor would rather my mum be in a constant state of distress, unable to stay still and risk falling which she has done at least 5 times in the last 3 days, then prescribe some medication to help calm her!!!! WHAT DO WE DO NOW my dad asked. The response " put her in s nursing home if you can't cope" I am utterly flabbergasted and quite honestly furious. I will be calling her neurologist for an emergency appointment. Sorry for the rant everyone 😢😢

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Careenh sounds like a right b******! I have never heard of anything like this happening? Anyone else?

Marie x

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What the fudge???.. Seriously? Has this GP been odd before? ...and the response "Put her in a nursing home if you can't handle it"?? How is THAT not a "deprivation of liberty" (COMPARED to an extra drug at home? No offence to anyone who has had to go that route, folks: you know what I mean..)

Here's a suggestion: Make a recording of your mom in screaming mode and go back to the GP and sit in his office and play it...LOUD >:-)

Here's hoping your Neurologist is more sensible! Keep us posted.

XXX

Anne G.

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I would sit in emergency at hospital until someone listen.

Sorry you are going through this.

Breathe

Dee

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Wow there are no words.

Really hope you get a quick appointment with the neurologist to get some qualified advice on what might help alleviate this phase of distress.

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Sorry to hear this! Change doctors! I’m sure you can find someone to help your Mum.

Prayers for you & your Mum

Kathy

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I would also suggest changing doctors and if possible going to urgent care is he your dads doctor too if so he should be concerned about his health too,our doctor always comes to the house even though mick is still physically able to go to the surgery, it is because he gets severe anxiety. So there are some decent doctors out there ,I hope you get your mum sorted soon .xx

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Careenh I fortunately never had this problem with the GP in relation to medication. However one Christmas Eve when my husband had fallen and I had to call an Ambulance to get him up again the Paramedics were furious that I had nobody to help me.

They rang the GP surgery and asked him to visit. He came but was not happy and my husband was told he would have to go into a Nursing Home if I couldn't manage him. What a nice Christmas present? He didn't go anywhere then but he did a few months later. I suppose doctors are hardened by so many people needing care?

I still can't understand why he won't give you the tablets though. Do as others say and change doctors. Some don't deserve the name!

Marie x

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Hi Careenh,

Please.

I would like to know what the neurologist thinks. The family doctor seems a bit (or a lot) confused.

Hugs.

Luis

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Hi Careenh

Blimey - That seems a slightly unreasonable response.

I can imagine if you were asking for very strong sedation it would be a deprivation of liberty. However the very words deprivation of liberty come from the care act because it is recognised that at some times some liberties need to be deprived!

And seeking something to make her less distressed seems very reasonable.

Seeing the neurologist is definitely the way to go.

It is no good your Mum having her liberty if the care breaks down!

I take it she is unable to agree or disagree to the decision herself?

I'm not surprised you are cross!

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Call your neurologist and have them write the prescription. They would have a better idea as to what to give her.

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Yes contact the neurologist ASAP and if you have the energy, write to the medical council about this GP's behavior. Appalling. I feel so much for you and your family. Sending virtual hugs and good wishes xxx

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He's obviously in the wrong job, what a callous response and so cold hearted to not suggest help for you all rather than have her go into a home if you want to care for her in her own home. Some of the professionals flabbergast you don't they. Meanwhile your poor mum has to suffer, bet they would get medication supplied in a home!

An irate Kate

Sending you a big hug. Xxxxx

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WOW! As many others suggest, get another doctor or see the neurologist for the prescription or treatment. Is there anything over the counter that might help in the meantime? Just a thought.

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I guess your GP has no experience of dealing with PSP which is often the case. Neurologists can be difficult to get quick appointments with (unless you go private). In the first instance I would try to talk to them on the phone. Explain your Mum's symptoms and be prepared to play a recording.You may find they are prepared to write to your GP advising/telling them to prescribe the appropriate medication.

Another route is to contact your local hospice. Ours had access to an excellent palliative consultant (she was the head palliative consultant for the County) that you could see. She was of course an expert in the sort of medication that can be used in these sort of illnesses that GP's might be a little shy of but in palliative situations they make sense.

For example I learnt from this site that atropine eye drops under the tongue help to dry up the saliva that PSP sufferers cannot clear themselves leading to aspiration and ultimately pneumonia .My GP who is excellent looked it up and agreed that it was a good idea but as in the uk they are only licensed for external use and are explicitly not to be taken orally he said he needed someone to tell him to prescribe them.I rang the palliative consultant who not only wrote to the GP advising him to prescribe the drops but wrote me a hospital prescription for me to collect that day as the drops were needed urgently.

A further idea is next time you make an appointment at your surgery ask the receptionist if you can see the GP who has the most experience with PSP. You will probably find it is none of them but it might mean that whoever you see might have looked it up and have the right mindset.

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I would change doctors. That is terrible. Doesn't even make sense.

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Time to help familiarize your GP with PSP. Some antianxiety meds are prescribed for this behavior. Or time to get a new GP....

I'm sorry

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