Panorama. Monday 8.30 BBC

daughter

Registered User
Mar 16, 2005
824
What can I say? I wish I could be more objective about the programme, but at the moment all I want to say is "I'm so sorry Dad, I wish I'd had more courage and challenged the decision to give you those terrible drugs".
 

OxonCarer

Registered User
Dec 3, 2007
1
I too saw the Panorama prog tonight and felt that the daughters feelings and experiences with her father mirrored many of my own. I found some of the footage really difficult to watch.

However, we were lucky as we had some wonderful support along the way from the Alzheimer's Society and also a charity called SPECAL who work from Burford on Oxon/Glos border. The latter's training seems similar that of the care home mentioned near the end of the programme (Spring Bank?) but the training is for families as well as professionals. They helped us hugely and I would recommend them to others in the area.
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
Oh Boy - yet another huge worry for me. Is he on the 'wrong' drugs on top of being in a locked pyschiatric ward? Is he on the locked pyschiatric ward because he has been on some of these drugs for nearly 2 years? So many problems - sometimes I am just overwhelmed. We do need programmes such as this but it has left me with yet another queasy feeling and panic attack. I feel like I am in a nightmare and just cannot wake up. XX TinaT
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,347
Kent
I watched a programme showing someone`s father and saw my mother.
At that time, I was so ignorant about dementia, I thought that`s what happened to everyone. It probably was.
 

j.j

Registered User
Jan 8, 2007
91
yes tina that is what it is a nightmare! my mam is on five of the drugs on panarama tonight, what to do, what to say, we will ring consultant tomorrow but probably made to feel we are over reacting to a t.v show. it was very very distressing to watch.
 

janjan

Registered User
Jan 27, 2006
229
59
Birmingham
After dad's new consultant revised his drugs earlier in the year ,dad was taken off a drug that he wasn't supposed to have been put on. He has L.b.D and slight Parkinson's. I never did find out who really put him on it in the first place. It took 3 months for him to be weaned off it. Thing's was covered up,i caused a fuss, but what about people with no voice, no family to do this for them. I wasn't liked for it. I totaly agree there isn't enough trained staff in dementia homes, and money should be spent for this from the onset.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Much to my surprise, I was able to watch the programme vis the website (the BBC normally blocks overseas ISPs) Now all I have to do is process the information.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
We have created a page on the website with information from the Society for those who have viewed the documentary.
What an excellent factsheet, said, very comprehensive. Congratulations to all concerned. I intend to print it off and take a copy to John's home.

I must say, after the programme, my respect for the team caring for John has grown even greater.

John was put on quetiapine when admitted to hospital, because of the aggression caused bu his infection. As soon as he was transferred to his EMI home, the charge nurse said that he would like to take John off it as soon as possible, as it was not their policy to use these drugs. John's now off it.

However, I also have to say that there is no real improvement (so far) in his condition, so I reluctantly have to conclude that his lethargy is caused by the progression of his illness, rather than purely the effect of the drugs.

Those of you feeling guilty, please don't. Dementia does that to people, and there's really no way of knowing how much is down to the drugs, and how much is natural progression.
 

cynron

Registered User
Sep 26, 2005
429
east sussex
I have visited the site and left my story telling how my husband was put on Quetiapine because SW at the day centre considered him to have become aggressive. Later when he was in hospital i asked for him to be taken off but was told it was ok for him, although to read the label and considering his other health problems it was definitely not ok. he passed away within the year with pneumonia aged 75.

Cynthia
 

CraigC

Registered User
Mar 21, 2003
6,630
London
I found the documentary incredibly painful to watch.
Confused as to what is causing so many of dads problems now and even more confused as to how to resolve this nightmare. He is on a low does of quetipine. The solutions are not suitable for most of us and all we can do is our best. Trouble with caring is you rarely feel your best is good enough.

Just feel it is a no win situation and an incredible flood of guilt to be honest :(
 
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germain

Registered User
Jul 7, 2007
342
Hello all,

Well ! I'll start off by apologising if I upset anyone - but- I found the documentary very very superficial. Although it attempted to raise serious isues it was such a poorly made programme that I don't really think it will have done the cause a lot of good. I was irritated that it seemed to be aimed at the section of the population who can't concentrate on anything for more than a few seconds - showing my age here - with the constant shots of nicely coloured pill bottles etc breaking up the segments ! -(or it could be that the Malcolm Poynton documentry was so good that anything else pales by comparison)

OK - it raised a few questions but I was left with many more

why did they need to secret film ? - the normal videos taken were OK
why did they think the symptoms were all down to anti-pyschotics ? - our Mum is like this without any of these drugs
why was the poor man in hospital for 2 years and then moved to a NH without telling family - was there something else going on here?

I thought Clive Ballard was impressive but would have liked to see the whole prog about the research done.

Again apologies for any upset but I think that "strangers" watching could have been left with the impression that its only the drugs that leave people like this and downgrade the effects of AZ or other dementias !

Serious issues but very inadequate programme making !
Regards
Germain
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Well, I watched the programme and it was certainly very moving.

The programme itself has certainly not clarified anything for me - I am now left totally confused about what are the effects of dementia, and what are the effects of these medications.

This is where the Alzheimer's Society should be best positioned to clarify things, and I have quite a few questions looping in my mind at present.

  • for a patient with Alzheimer's who has had none of these medications, what are the behavioural characteristics that might be shown?
  • are any of the side effects of these medications similar to the effects of the dementia itself? eg aggression, constant movement and doing things, loss of speech and other faculties
  • for something like sundowning, what is the alternative to the medication?
  • these medications have been prescribed initially by NHS assessment centres - are they still doing so?
I would have felt happier had the programme presented a balanced picture; it was a bit too tabloid in its presentation and I never quite believe anything I see in a tabloid.

I appreciate that it might prove a wake-up call. I just hope someone turns the lights on sometime. :confused:

It scared the pants off me though and I think it needs a follow-up that looks at the topic in more depth and with broader canvassing of medical experts.

[edited to add: only just saw Germain's post before this, which is on a similar theme]
 
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Trilobyte

Registered User
Dec 4, 2007
8
Hello all,


OK - it raised a few questions but I was left with many more

why did they need to secret film ? - the normal videos taken were OK
why did they think the symptoms were all down to anti-pyschotics ? - our Mum is like this without any of these drugs
why was the poor man in hospital for 2 years and then moved to a NH without telling family - was there something else going on here?

Germain
I will answer your questions:
We filmed undercover because nobody was listening to what we observed about Eric's behaviour and even worse the medical notes and records were were not reflecting his true state.
The symptoms were directly attributable to the drugs because his condition deteriorated rapidly after the drugs were prescribed, There was a real marked loss of cognition.
He was 2 yrs in hospital because there was no home for him, and yes you are right there was other things going on with the PCT.

This was a painful process for my sister and I and if the film helps raise people's awareness and gives strength for others to the misuse of anti-psychotic drugs to treat dementia patients then it was worth doing.
Nigel
 

germain

Registered User
Jul 7, 2007
342
Hello Nigel,

Thank you for your direct response.

Yes, I agree the film did raise the issues BUT and sorry here that you went thro' so much pain in making etc - I think the film makers didn't do you justice.

Condolences on the recent loss of your father.

Germain
 

fearful fiona

Registered User
Apr 19, 2007
723
72
London
I saw the programme and have taken some time to comment because I didn't agree with some of it and didn't want to upset anyone, but having seen Brucie and Germain's comments I have to agree with them. Nigel I think it was very brave of you to do what you did - my feelings go out to you and I think the programme makers could have done a better job for you. Although I suppose it is difficult to fit in such an important issue into a mere half hour.

There were a lot of unanswered questions, the one that particularly got me wondering was about there being no records of next of kin and the move to a NH being made without telling next of kin. How is it that there were no records of next of kin? Perhaps I have been lucky with my Mum and Dad, but my details as next of kin are recorded just about everywhere and I have always been informed of what is going on.

Having said that I am grateful that the programme raised this issue. My Mum is on two of the drugs they mentioned, it is early days and they prescribed them because she was so violent and uncontrollable. At the moment she is calm and confused, but definitely not zombie like, although thanks to the programme I shall monitor things very closely indeed.

Hope my post does not offend.
 

Trilobyte

Registered User
Dec 4, 2007
8
Hello Nigel,

Thank you for your direct response.

Yes, I agree the film did raise the issues BUT and sorry here that you went thro' so much pain in making etc - I think the film makers didn't do you justice.

Condolences on the recent loss of your father.

Germain
Thanks Germain
I agree with you. And our hope is that perhaps it may lead to something that could have more depth and balance, but there was only 26 mins for this film.
There was another issue that has not yet been addressed and that is the way we, as relatives suffered from challenging the system on his care. This was the driver for what we did and to record with accuracy to substantiate our point of view and to give my dad a voice which he did not have.
I am glad now that his suffering is over, the quality of his last years were not what they would have been if he had not been given the inappropriate cosh of drugs to manage his behavior. The film showed there is an alternative, but it needs resources and a change of perception on how to manage vulnerable dementia patients.
Nigel